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Channel: Elizabeth Glaser Pediatric AIDS Foundation Blog

Testing in a Manyatta

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It’s 107 degrees Fahrenheit at midday in a village outside of Lodwar, Kenya. Goats and children dash across the sand, while most adults have retreated to the sensible shade of their manyattas, traditional family homes built of sticks, thatch, and mud.

Two women in long white coats, Esther Kapoko and Anna Akeru, stride through the village. Following a map drawn for them three days earlier, Esther and Anna stop at the manyatta of Joyce Ewoton, who greets them at the entrance along with three of her children, Evaline, 16; Bartholomew, 8; and Benjamin, 5.

Esther is an HIV testing counselor and Anna is a linkage officer, colleagues at the Lodwar County Referral Hospital, where Joyce receives HIV care and treatment. A widow living with HIV, Joyce is an “index client,” meaning that her household has been targeted for testing and counseling to ensure that any other family member living with HIV is identified and linked to treatment. 

Joyce learned her own HIV-positive status two years ago when her husband died of an AIDS-related illness.

During Joyce’s recent visit to the hospital to pick up her antiretroviral medicine, Esther and Anna made an appointment to come test the children. Joyce immediately agreed to the visit. The hospital is 10 kilometers away and the family doesn’t own a vehicle or donkey.

Communities in Turkana, this arid northern county, face many public health challenges as a result of food scarcity, distance from health facilities, and the nomadic culture. Through the Pamoja (which means “together” in Swahili) project, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) has focused on overcoming these challenges by adding HIV services to local health centers, training peer counselors within communities, and initiating community-based testing and counseling by health workers like Esther and Anna.

With Bartholomew and Benjamin looking on eagerly, Esther and Anna enter the manyatta. Esther retrieves a square of black plastic from her kit and spreads it on the tamped sand floor. She then places her rapid testing apparatus on the plastic along with a spiral pictograph book that explains the process, step-by-step. In the Turkana language, Esther explains that she will be pricking the finger of each child to take a blood sample. Then she will apply the blood to a tester. If the tester shows two lines, it will indicate that the child is positive for HIV and Anna will then link the child to the hospital for a confirmation test and likely treatment.

One by one, the children come forward and face the sharp prick. Benjamin’s eyes well with tears in surprise, but his older brother and sister put on tough faces.

While they wait for the tests, Esther gives a short HIV lesson, explaining how it can be transmitted as well as the effectiveness of sustained treatment.

Within the Turkana context, children run an additional risk of infection as they are growing up because it is traditional to shave their heads with a straight razor blade, usually using the same blade for many people. Esther cautions against this practice. Privately, she talks to Evaline about the importance of abstinence or using condoms now that she is reaching the age of sexual maturity.

With ten minutes passed, Esther reviews the test results with Joyce and her children. Joyce gives a relieved laugh when she sees that all of the children are HIV-free.

“I was not worried,” Joyce says, “but I am happy to see the results. I feel good.”

Esther and Anna pack up their kit, chatting with Joyce and her children about their general well-being. With some final hugs, the two health workers bid farewell. Outside the village, they hope to find a motorbike taxi to transport them back to the hospital.

“Joyce is an exemplary client,” says Esther. “When we came here, we asked her if she worried about stigma of living with HIV. She told us that she accepts her status. She wants other people to learn the way she is behaving, so she doesn’t mind neighbors seeing that the children are getting tested at home.”

This mission is personal for Esther. Her sister and brother-in-law died from AIDS-related illness several years ago and she is now raising their three children along with three of her own. Her sister’s youngest daughter is living with HIV, and Esther is the one who tested her and linked her to HIV care and treatment.

Working with their colleagues at the hospital, with technical assistance from EGPAF, Esther and Anna regularly participate in data reviews to track their progress in reaching family members affected by HIV to make sure that they are tested for HIV and are linked to treatment. They say that they are on track to surpass their goal of testing 90 percent of the family members of their index clients this year.

The Value of Testing Early

Testing all children affected by HIV is the first step in ending AIDS in children. At EGPAF-supported sites, pregnant women are routinely tested for HIV so that they can be enrolled in prevention of mother-to-child transmission (PMTCT) of HIV. Their infants are tested for HIV throughout the postnatal and breastfeeding periods to ensure that they are HIV-free. If a mother with children tests positive for HIV, her children are identified for testing so that they can be put on treatment if they are HIV-positive.

The average age of treatment initiation for children living with HIV is 4-and-a-half. Yet we know that without treatment most HIV-infected children will die before the age of 5. This means that many undiagnosed children are dying.  Changing this requires an approach that is both urgent and pragmatic. Traditional health sites and clinics are not reaching enough children, so EGPAF is working to reach them where they live, learn, and play.


Life Stories: “My Life Changed With the Prick of a Needle”

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I am a 32-year-old nurse, and the mother of four children. I am currently working for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) as a field supervisor in Kinshasa, Democratic Republic of the Congo (DRC). I provide technical support to health care providers within the facilities supported by EGPAF to improve the quality of services and data on HIV care and treatment, particularly regarding prevention of mother-to-child transmission of HIV (PMTCT).

I contracted HIV in 2007 at Kinshasa’s General Provincial Referral Hospital when I was working as intern after completing my studies in nursing. I inadvertently pricked myself on a needle I had used to inject an HIV-positive patient—though I was unaware of her status at that time. I reported the needle prick to the chief nursing officer, who suddenly became quiet and shook his head.

This attitude made me worry that something bad had happened. My worry was confirmed two weeks later when he suggested that I get a blood test. I was relieved when the test result was negative for HIV. Three months later, my internship ended and I quickly forgot about the incident.

The following year, when I became pregnant, I sought antenatal care at Saint Joseph Hospital. There, I attended a PMTCT education session and was tested for HIV. The test result was positive, which shocked and depressed me. Back home, I shared my HIV-positive status with husband. He wondered about the origin of my infection since we had both been tested before getting married, and our results had been negative.

I realized that I must have contracted the virus on the day I was pricked by a used needle, so I shared my HIV-positive status with the chief nursing officer who had supervised me during my internship. He confirmed me that the needle with which I had been pricked with was from an HIV-positive patient. Fortunately, my PMTCT counselors gave me hope. They told me what I could do to prevent my baby from contracting HIV. I adhered to my antiretroviral treatment  during my pregnancy to mitigate the risk of transmitting HIV to my baby.

Unfortunately, I was abandoned by healthcare providers during labor and delivery because of my HIV-positive status. They refused to touch me. I vainly begged them to save the life of my baby.
“Please help me,” I cried, “I am a nurse like you. I need your solidarity!”

But they would not touch me because of my HIV-positive status. On my own, I strongly pushed the baby and delivered a daughter, tearing my perineum, which caused severe post-partum hemorrhaging.

After delivery, Saint Joseph Hospital referred me to the Bomoi Health Center for HIV care and treatment support. Six weeks after her birth, my daughter, Dorine, developed ganglionic tuberculosis. She received treatment, but her health continued to worsen. As she was an HIV-exposed infant, health care providers initiated early infant diagnosis (EID). She tested positive for HIV and was started on HIV and tuberculosis co-infection treatment. I was depressed, but my husband empowered me with words of hope.

In 2011, I became pregnant again and delivered an HIV-free daughter, whom I named Segolene. Her HIV-negative status helped me recover the joy I lost when Dorine was born with HIV. As nurse, I started to provide psychological support to other HIV-positive women, encouraging them to adhere to HIV care and treatment services. I started telling my own story to empower them. Based on my commitment and my will to empower and encourage other HIV patients, EGPAF’s field supervisors appointed me a mentor mother and a support group leader.

In 2014, I delivered HIV-free twins, Karl and Brunela. I am living in a discordant family: my eldest daughter and I are living with HIV, while my husband and three other children are HIV negative. My husband is very supportive. He encourages us to stay on treatment. I feel that male attitudes are a strong factor in HIV adherence.

Based on my nursing degree and my commitment in empowering other people living with HIV, EGPAF’s field officers encouraged to apply for an internship as a field supervisor, and I was hired. As a field supervisor, EGPAF has given the opportunity to practice what I have learned. I tell health workers that they must take precaution when handling sharp objects, but that they do not need to be afraid of becoming infected with HIV as long as they follow procedures. If I had been better instructed, I would have avoided that needle prick.

I encourage all pregnant women to get tested for HIV. If their testing results are positive, health care providers will show them how to live a normal, healthy life with HIV and how to protect their unborn children from contracting HIV. I also encourage EGPAF to keep supporting families that need help to save their lives.

Thank you, EGPAF. Thanks to your psychological and technical support, I am healthy, have three HIV-free children, and have prevented my husband from contracting HIV.

 

EGPAF LAUNCHES EXPRESS HEALTH SERVICES FOR ADOLESCENTS IN KENYA

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The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), with funding from ViiV Healthcare, launched a new program on June 28, 2016. A one-year, renewable award from ViiV Healthcare’s Positive Action for Adolescents Fund, will allow EGPAF-Kenya to implement the program in 50 sites in Kenya’s Homa Bay County.

The Red Carpet program, targets adolescents with HIV to help curb rising infections and AIDS-related deaths among the group; it is geared towards improving access and uptake of HIV testing and counseling, as well as retention to care and treatment.

Homa Bay has the highest HIV prevalence rate in the country. In Kenya, 30% of all new HIV infections occur among youths, aged 15-24 years – and 1 in 5 adolescents in Homa Bay is HIV-positive. Poor linkage to and retention in HIV care, high loss to follow-up between testing and initiation of antiretroviral treatment (ART), and poor treatment adherence are contributing factors to AIDS now being the leading cause of death and morbidity among Kenyan adolescents and young adults. (Kenya National AIDS Control Council. Kenya’s Fast-track Plan to End HIV and AIDS Among Adolescents and Young People. September 2015. Accessed on June 15th, 2016.)

Adolescents are the future of this country. We must walk with them, encourage them and keep [an open dialogue] with them, to ensure they remain healthy even if infected with HIV.

Cyprian Awiti, Homa Bay County Governor

EGPAF has found that adolescents are particularly affected by the disease due to common challenges with treatment -- contributed in part by poor parental and social support, stigma and fear associated with being HIV-positive, and especially, lack of access to youth-friendly services.

The new adolescents-focused express services program will aim to curb HIV infections among the group. Through the program, adolescents who have been newly identified as HIV-positive will be given priority when they attend clinics, and will not have to wait in long lines with other patients.

The ViiV Red Carpet program will also support adolescents to be enrolled into psychosocial support groups, train peer educators, and offer disclosure, adherence and nutrition counseling.

The program will join forces with health clinics and community health advocates in Homa Bay to strengthen meaningful involvement of adolescents and young adults in their own HIV prevention, care and treatment programs. Empowering youth to care for themselves will increase the capacity of health workers in provision of adolescent and youth-friendly HIV services.

“The program has assisted us [in realizing] that [in order] to make our services convenient and accessible to adolescents, we need to move the clinic days to the weekend,” said Carolyne Adongo, Nursing Officer at Rangwe Sub County Hospital.

Other guests also praised the new initiative and its benefits to the county.

The County Executive Committee member for Health, Dr. Lawrence Oteng’, applauded the program, noting that timely access to sexual and reproductive health services will likely reduce new infections among adolescents, and particularly young women.

The County Executive Member for Education, Dr. Naftalli Mata, spoke of the growing number of school-going adolescents who are living with HIV and called for expansion of adolescent friendly services in schools

Dr. Eliud Mwangi, Country Director for EGPAF-Kenya, reiterated the importance of prioritizing adolescent health in the county and gave assurance of EGPAF’s support.

“EGPAF focuses on ensuring that every child and adolescent is not only protected from HIV, but also promptly diagnosed and initiated on lifelong treatment when infected. We envision a future free of HIV/AIDS for our children and families,” said Dr. Mwangi.

ICYMI: Watch our Three Videos from #AIDS2016

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It's been a little more than a week and a half since #AIDS2016 wrapped up in Durban, but we're still buzzing with excitement. The 21st International AIDS Conference (AIDS 2016) was held from July 18 through 22, in Durban, South Africa.  It was a chance to assess where we are, evaluate recent scientific developments, lessons learned, and collectively chart a course forward. AIDS 2016 convened tens of thousands of delegates from around the world. This year’s conference was particularly momentous; because it is the first International AIDS Society Conference held in Africa since 2000, and because of the recent launch of the World Health Organization (WHO) guidelines recommending Treatment for All infected with HIV.

The conference underscored the tremendous progress that has been made, but that there are still considerable obstacles to ending AIDS for good. EGPAF was awarded the honor of three oral abstract-driven presentations and 17 posters. We also hosted four satellite sessions at AIDS 2016, all of which focused on closing in on virtual elimination of HIV: from tackling the disease in adolescents to realizing full-scale implementation of the 2016 World Health Organization treatment guidelines. 

To follow all of our updates from #AIDS2016, check out our Storify

 

During #AIDS2016, EGPAF also took the opportunity to launch three new videos. 

“Growing Up With HIV” – a film highlighting the unique medical, psychological and social challenges HIV-positive young people face every day. The video was premiered at the EGPAF hosted session, ‘Reaching the Sky - Supporting Adolescents with HIV in Living Health and Striving.'

Additionally, we launched another video during our session with UNAIDS, PEPFAR and Johnson & Johnson called: "Start Free, Stay Free, AIDS Free: Finishing the Job of the Global Plan." The session highlighted country-specific progress made under the Global Plan, as well as areas for increased focus to achieve an AIDS-free future for children, adolescents, young women and mothers by 2020. The program will move from discussion around the Global Plan, the Start Free, Stay Free, AIDS Free campaign, field examples of forward movement and a personal story of HIV program success. Led by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), Start Free, Stay Free, AIDS Free brings together a coalition of partners to build on the tremendous progress achieved under the Global Plan towards the Elimination of New HIV Infections among Children by 2015 and Keeping their Mothers Alive (Global Plan). Start Free, Stay Free, AIDS Free provides a roadmap for the urgent work ahead, elevating and amplifying key initiatives that are already accelerating progress for children, adolescents and young women. Visit www.http://free.unaids.org/ to learn more. 

Lastly, we worked closely  with award winning filmmaker Mike Kepka and launched a short film called "Anna's Story," spotlighting the daily struggles that adolescents face when coming to grips with their HIV diagnosis.  Young people growing up with HIV have unique medical, psychological and social challenges they must face every day. It’s important that they are equipped with knowledge and empowered with support to help them lead their lives to their greatest potential. Many people don’t know that while AIDS-related deaths worldwide are decreasing for adults, they are INCREASING for adolescents. AIDS has become the leading cause of death among adolescents in Africa, and the second leading cause globally. Many young people aren’t aware of their status, or they are afraid to voice their questions or frustrations to their families, caregivers, and communities for fear of stigma. Our film focuses on Anna, whose bravery and courage inspires us, and underscores the need to continue the work to #EndAIDS for good.

While the conference may be over, (watch this great recap event hosted by CSIS), our work is far from complete. You can continue to follow our updates here, on Twitter, Facebook, Instagram ,Youtube, and LinkedIn.  

Reflections on #AIDS2016: We’ve come a long way, but our work is not done

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On Sunday July 17, 2016, my girlfriend Kerry and I touched down in Durban, South Africa. We were greeted with smiles, an amazingly vibrant community, and the familiar sound of waves crashing on the shoreline. A good night’s sleep was immensely needed by both of us as the next morning kicked off the 2016 International AIDS Conference (#AIDS2016), and the week ahead promised to be full of activity!

As the sun rose on the eastern coast of South Africa on Monday morning, it was time to hit the ground running. While tens of thousands converged at the Inkosi Albert Luthuli International Convention Centre (Durban ICC), familiar faces started to pop up. Partners of the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), as well as many HIV/AIDS-focused organizations from around the world were present to discuss the future, and the collective hope and determination that it will be a future that is free of HIV. The goal is to eliminate this disease by the year 2030 and this week was dedicated to addressing the long list of challenges that we face, and must overcome in order to accomplish this feat.

As a 31-year-old man, living with HIV, for me, the focus is all on the next generation. While statistics and research into new antiretroviral medications (ARVs) are essential, it is education and awareness that will end this epidemic and that starts focusing on young people.

One thing is for sure, every new generation that grows up is farther and farther away from the stigma that captured and deeply affected the virus’ earliest victims. I was inspired by many young people I met with at #AIDS2016 who dedicate their time to championing and speaking out about the unique issues they face in their communities with HIV/AIDS. It was clear to me that in order to effectively fight against HIV, we must listen to youth, and empower them to raise their voices.

We know the science and we know the statistics -- that young people today are the hardest hit by HIV. It is the leading cause of death amongst adolescents in Africa, and the second leading cause of death among adolescents worldwide.

As human beings, we see the behavior of those that are older than us and we adopt certain beliefs and views in life. The unfortunate part about HIV is that the views and beliefs of the older generations around HIV are those of death and stigma. The truth today is that anyone who is HIV positive, knows their status, and receives treatment can live a healthy, fulfilling life. They can even have their own healthy families, and raise children who are HIV-negative.

This year’s International AIDS Conference focused on the next generation and it was a privilege to stand beside other influential peers of mine from Kweku Mandela, Elizabeth Taylor’s grand children and Prince Harry—all who have been using their platforms to help fight stigma around AIDS.

The most touching part, for me, is the lineage and connection that I have to all of these amazing people. Our parents all knew each other and paved the way in this fight to end AIDS throughout the 80s and 90s.Today, it is in our hands to finish the job.

After seeing, hearing and feeling the energy and action of this year’s conference, I am more motivated than ever to continue the fight.  I am confident that this is not only a dream of an AIDS-free future, but a reality. AIDS-free future, will only happen if we work together in one effort to end this epidemic once and for all.

Reflections on #AIDS2016: Momentum must continue, the effort must double

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As the 2016 International AIDS Conference wrapped up, a renewed energy was surging through the community of Durban. I was impressed that despite a busy whirlwind week, there seemed to be a harmonious synergy of ideas and collaboration on how we can end AIDS. Youth voices and participation are what we need to get us there. On the last day of the conference, as I strolled through the Global Village, passing performer after youth group after radio show after local artisans, a warming feeling filled my heart. It was one of unity and empowerment. Young, HIV-positive adults, ages 16-23 radiated hope and showed the needed momentum to end this epidemic by 2030.

Out of all of the amazing people I had the privilege of meeting, one person in particular stood out. His name is Samuel Maneela from Lesotho. Only 21 years old and quite the powerhouse.  We met when we both participated in a panel hosted by EGPAF to discuss the importance of testing, adherence to treatment and disclosure of status among young people within communities. Samuel spoke eloquently and rose awareness of the main issues and barriers he and others face within his community. What stood out to me was that these issues are no different than those we face here in the US. HIV is still portrayed so negatively around the world, and as a death sentence. We get labeled as having made bad choices in life, despite the fact that most people don’t know our complex and unique stories. As we closed the session and started talking, Samuel and I started throwing around ideas. At the end of the day, we both agreed on something powerful- across the world most people are medicated for something. What makes their pill any different than ours? Absolutely nothing.

It is obvious that stigma, that word that we use so often still lingers around the world when addressing HIV/AIDS. In my opinion, the truth is that stigma exists because of the rhetoric of previous generations and how media has highlighted this issue. Today however, we have the power to change the dialogue and help people understand that people who are HIV-positive, can, in fact, lead healthy, productive lives. Samuel along with so many other amazing peer counselors not only understood this perspective but embody it in the most amazing way. They grew from being shy to being charismatic, from being slightly scared to being highly energized about this idea that we don’t have to hold onto antiquated ideas about stigma – we can choose to let it go and move on to an amazing future that we shape where there are no boarders and no boundaries.

As we reflect on the ideas that were shared, at the statistics provided and the relationships built during the conference, we all have to remember that the follow up is most necessary. The momentum must continue, the effort must double, and those that have the power to develop and implement must do so. It is now time for community and industry to grow stronger together. The media must step up and play a role in how we broadcast information and awareness around issues like HIV and others.

The momentum must continue, the effort must double, and those that have the power to develop and implement must do so. Jake Glaser

Most of all, we need to harness the power of influencers - the actors, athletes, musicians, artists and community leaders - they have an amazing opportunity directly in front of them. They can help change the world- literally.

We need action. Thank you to Samuel and so many others alongside EGPAF, actively working to see the change we need. It is a new age and a new day, a day that is the beginning of the end of AIDS.

UP 4 THE FIGHT Top Fundraiser Reflects on Trip to Zimbabwe

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Hi, it’s Kat again, the 2016 UP 4 THE FIGHT Top Fundraiser. I can’t believe it has been over a month since my trip to Harare, Zimbabwe with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF)! Before I left, I was unsure of what to expect. I had no idea what the people, the clinics, the country would be like. When I arrived, I quickly realized that it would be a life-changing experience.

Being a part of the Pediatric AIDS Coalition (PAC) at UCLA, I knew statistics. I knew the number of HIV-positive babies born each day, I knew that sub-Saharan Africa has the highest HIV rates in the world, I knew the majority of the funds raised from Dance Marathon support EGPAF, but it wasn’t until this adventure to Zimbabwe that I really understood what it all meant.

After sitting on various airplanes for as long as I danced in UCLA’s Pauley Pavilion last May, finally stepping off the last plane into the night air of Harare felt like both a sigh of relief and a jolt of excitement.

My first morning at the EGPAF-Zimbabwe country office was incredible. I had the opportunity to sit in on a meeting with the Zimbabwe team and hear about current work they are doing and the progress being made. In return, I described what Dance Marathon is and how it supports the work being done by EGPAF. Understandably, “I danced for 26 hours,” was met with some skeptical looks.

What I was blown away by was that Zimbabwe’s mother-to-child transmission rate has been reduced to 6.7%. That is absolutely amazing! While at the office, I also had the opportunity to be interviewed by a local reporter and a fast-talking radio host. When speaking with the radio host, I became increasingly aware of how often I was saying the word “education.”

Many of the host’s questions were related to how stigma can be reduced in Zimbabwe and our conversation kept returning to education. I kept stressing the importance of teaching the various communities about HIV/AIDS and how that will improve the quality of life for those living with HIV/AIDS.

After the office meeting, we traveled to the Makumbe Mission Hospital. This hospital only has three doctors and 44 nurses, and yet they manage to take care of 13,000 patients. EGPAF helps to provide the funds and technical support so that these doctors and nurses are equipped with the tools that they need to properly provide care in facilities that are constantly improving.

I observed how the hospital was striving to meet higher quality improvement standards, whether that be through more thorough ways of reaching patients in the community about missed appointments or improving their patient records.

During my week in Zimbabwe, I saw Victoria Falls, I saw elephants, lions, even rhinos. However, the most rare, profound, and beautiful thing that I had the privilege of witnessing occurred after visiting the Makumbe District Hospital.

I had the opportunity to visit the home of an HIV-positive mother who was breastfeeding her HIV-negative baby as we visited with her.

I remember when I was raising funds and dancing last May, there were moments during those 26 hours when my feet hurt, when I wanted to give up, when I wondered how I, as an individual, was really making a difference in this fight. But seeing this mother and knowing that she will get to watch her child grow up, that she will not have to lose him to the same fight that she has been battling, that she can even breastfeed him and not worry about transmitting the disease, that is when it all clicked for me.

This is the moment I wish I could share with everyone not only in PAC or at UCLA, but with everyone who dances and raises funds to reach an AIDS-free generation. 

...seeing this mother and knowing that she will get to watch her child grow up, that she will not have to lose him to the same fight that she has been battling ... This is the moment I wish I could share with everyone who dances and raises funds to reach an AIDS-free generation. Kat Calvert, UP 4 THE FIGHT Top Fundraiser

This trip with EGPAF truly was the opportunity of a lifetime. I returned to the United States with more knowledge, more insight, and more passion about the work being done and how I can support it. I’m proud of the progress being made and I’m proud to be a part of this fight to end AIDS. I can’t wait for Dance Marathon 2017 and for the next Top Fundraiser to share in this incredible, once in a lifetime experience.

For more information about the UP 4 THE FIGHT program and how you can be even more involved, please email up4thefight@pedaids.org and check out www.up4thefight.org.

Teens Taking Care of Teens

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While the global mortality rate of HIV has declined over the past 15 years—due to more cost-effective and increasingly accessible antiretroviral medication (ART)—young people ages 15–24, account for 35 percent of new HIV infections. AIDS remains the leading cause of death of adolescents in sub-Saharan Africa. Today, on International Youth Day, we introduce a young woman from Zambia who is making a difference while living with HIV—as a counselor in the Tisamala Teens program.

Our Lady’s Hospice is a neat cluster of brick buildings on the outskirts of Kalingalinga Compound, a densely populated, low-income area in Lusaka, Zambia. Although the name suggests otherwise, Our Lady’s Hospice, has little to do with death and dying. This health facility is bursting with life.

In 2012, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) came to Our Lady’s Hospice and created the Teens Club, a support group for adolescents living with HIV. Later that year EGPAF introduced the Tisamala Teens mentor program, offering psychosocial support and life skills development to adolescents.

Tisamala, which means, “we care,” offers 13 interactive sessions. Topics include managing feelings, finding support, maintaining health in sexual relationships, making difficult decisions, and thinking about the future. Adolescents actively learn through participatory problem solving, which encourages peers to share their thoughts, beliefs, and experiences.

Jennifer Mwansa, 17, now a Tisamala counselor, was diagnosed with HIV when she was 8 years old, but was not made aware of her status until a couple of years later.

“It really felt bad,” says Jennifer. “You start thinking, ‘Why me?’ Some of my siblings are not HIV-positive, and I am one of them who is positive. How did that happen? So many questions. But I didn’t want to disturb myself, so I tried to be cool and first learn the truth about it.”

Today, after several years of counseling and peer support, Jennifer has come to not only accept her status, but to embrace it.

Even though I’m HIV-positive, I shouldn’t think as if it’s the end of the world. Jennifer

“Since I know my status, I know what to do with my life. I know what I shouldn’t do and what I should do. I know what to eat and what I shouldn’t eat. I have that knowledge on how to keep myself positive. Even though I’m HIV-positive, I shouldn’t think as if it’s the end of the world.”

“Most of my [peers, also living with HIV are] not the way I am. I’ve accepted the fact that I’m HIV-positive. But some of them are dying. Some of them are being discriminated against. Some of them are being stigmatized. So if I know that I can render help, I have to go in. I don’t only counsel young ones, I also counsel parents.”

Jennifer plans to attend university and attain a law degree.

Her advice for other children and adolescents who have recently learned their HIV status is:

“To accept: That’s the key to everything,” Jennifer says. “If you won’t accept the fact that you’re HIV-positive, you’ll be disturbed mentally. Even though you’ll be taking the medicine, they won’t be working because your mind is busy troubling you…. We just have to accept it first, and then live on.”

 


The Human Right to HIV Services

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Right now, more than 100 million people around the world, are in need of humanitarian assistance—whether because of natural disaster, civil war, gender-based violence, or some other crisis. World Humanitarian Day, August 19, is an occasion to focus on people in need and the relief workers who are meeting their needs. One issue that is sometimes overlooked in discussions about refugee populations is the challenge of linking displaced people to lifesaving HIV services.

One issue that is sometimes overlooked in discussions about refugee populations is the challenge of linking displaced people to lifesaving HIV services.

As the global leader in ending AIDS in children, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) is working to ensure that all families have access to HIV testing, treatment, and prevention services—no matter where they happen to be located. In 2014, EGPAF, began supporting HIV programs at the International Refugee Committee (IRC) camp in Kakuma, Kenya.

Nearly 200,000 individuals live in this community in Kenya’s arid Turkana County. Most residents are refugees from the civil war in South Sudan, 130 kilometers to the north. Others have fled violence in Ethiopia, Somalia, Uganda, and the Democratic Republic of the Congo.

“We appreciate [EGPAF’s] efforts. Without it we would not be able to serve our refugees,” says Agnes Karubu, the nurse-in-charge of the antenatal unit at Kakuma Mission Hospital. She remarks that EGPAF has transformed the care and treatment landscape at Kakuma by providing the technical assistance and staff needed to integrate HIV testing and treatment throughout the health care system. EGPAF has also been instrumental in expanding HIV services beyond the hospital to each of the six smaller clinics located throughout the camp.

The value of this comprehensive approach is illustrated by the experience of a Congolese family who arrived at the camp eight months ago.

Back in the Democratic Republic of the Congo (DRC), Clement was a mechanic and driver. His wife, Fabiolla, was a clothing vendor. Both parents and their son, Wilson, now 13, were diagnosed with HIV in 2010 and were adhering to treatment. Two older siblings are HIV-free. Despite the ongoing political violence in DRC, the family lived well. They owned livestock, goats and cows, and maintained a small farm.

Then Clement’s father died, and his younger brother vowed to kill Clement and his family in order to take possession of the family property. Fearing for the lives of his loved ones, Clement gathered all of his money and fled to Burundi with his family.

Unable to return home and unable to make a life in Burundi without legal papers, the family set their sights on the IRC camp in Kenya. Bribing a truck driver with their last remaining money, about $500, the family allowed themselves to be locked into the back of the trailer and crossed the border into Kenya.

Despite the peril of their journey, Clement and Fabiolla were joyous to arrive at the camp—alive and together. And they were relieved to find access to HIV care and treatment. During their travels, they had almost exhausted their supply of antiretroviral (ARV) tablets. During the family’s intake session, Clement showed a counselor their prescription pill containers, and they were quickly linked to treatment.

Now the family walks the dirt roads to the closest clinic once a month, where they have their blood drawn to test their viral loads, and they receive ARV refills. In addition, Fabiolla has joined a psychosocial support group that meets once a month in their sector of the camp. During the meetings, an EGPAF-trained clinician further educates the HIV-positive women about the virus, and the women turn to each other for support, creating community in this makeshift city.

Clement and Fabiolla haven’t yet figured out their next move. They fear that they will be killed if they return to DRC, but they don’t want this life in limbo to become their family’s new normal. Still, at the moment their children are safe from violence; they are enrolled in school; and the family has access to HIV care.

“My children mean everything to me,” Clement says. Then he smiles and pulls Fabiola in tight—“and my wife, too.”

 

 

UP 4 THE FIGHT College Fundraisers Prepare for Another Successful Year

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Earlier this month, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) hosted eight students from four universities, to share information about the foundation and to prepare for a successful season of dance marathons. Although the school year is still weeks away, the dedicated college students in charge of the UP 4 THE FIGHT Dance Marathons are already planning their events and fundraising campaigns.

Four of EGPAF’s four dance marathon partners sent two student representatives to our DC office to learn about fundraising strategies and to share best practices with each other. With representation from across the country (Los Angeles to Boston), the students welcomed the opportunity to hear from others at different universities working towards the same goals: to raise funds for EGPAF and to spread awareness of pediatric AIDS on their campuses and in their communities.

At these events, which are held throughout the academic year, dancers are required to stay standing for 12–26 hours. Entertainment, food, activities, and a whole lot of fun keep students on their feet.

With events this size, extensive planning by the students is required. At this year’s Dance Marathon Retreat, the students discussed the challenges and successes they have experienced in preparing and executing a successful event. The students discussed different fundraising opportunities, various ways to increase engagement and participation, and tackling event management issues.

The students also had the opportunity to learn about EGPAF. The retreat participants were excited to become more familiar with EGPAF’s work and look forward to sharing information with their event participants.

EGPAF’s CEO and President, Chip Lyons, kicked off this year’s retreat with an introduction to the organization and its important role in ending pediatric AIDS. EGPAF staff members involved in Public Policy & Advocacy, External Affairs, country project management, and more, provided insight into the daily work and successes of the foundation. 


 

The students also learned about specific research projects funded by the UP 4 THE FIGHT program from Vice President of Research, Dr. Laura Guay, and Director of Global Implementation and Research, Godfrey Woelk.

To show appreciation for all of the hard work they have put into the UP 4 THE FIGHT program, EGPAF organized a tour of the National Mall and a quick visit (and photo-op) in front of the White House.

We can’t wait to see what these students accomplish with their fundraising campaigns this year.

If you would like to learn more about how to get involved with UP 4 THE FIGHT Dance Marathons at UCLA, UC-Berkeley, College of the Holy Cross or Baldwin Wallace University, please visit up4thefight.org or contact us at up4thefight@pedaids.org.

Listening to Deaf People

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David Ogoro stands at the head of an improvised classroom at the Kendu Bay Sub-district Hospital, energetically leading a discussion about barriers to HIV adherence. His pupils are keenly engaged and participate freely, but the only sound is that of hands brushing together to form words. This is a psychosocial support group for deaf people living with HIV in Kendu Bay, Kenya, a town on the shore of Lake Victoria in Homa Bay County.

This region of Kenya has the highest prevalence of HIV in the country, with one in four people infected with the virus. Through the Pamoja Project, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) has been working over the past five years to improve access to HIV testing, treatment, and psychosocial support, for all people in Homa Bay

Unlike other support groups, which are usually formed among peers of similar ages, this group includes young children, adolescents, adults, and mature adults. They are connected by the challenges they face as deaf people—as well as the support that they can uniquely provide for each other.

“Many NGOs [nongovernmental organizations] are not focusing on the deaf community, says David, 36, in an interview after the meeting. “So when [that organization] has information about HIV and AIDS, there is a barrier for deaf people.”

David lost his hearing when he was 8 years old as a result of polio. Because of his early childhood with hearing, he was able to learn to lip read more easily than his peers who were born deaf. He is also able to speak, which makes him an important link to the hearing world.

Unlike the other members of the support group, David is not living with HIV. But he feels passionate about HIV education, having lost his older sister and his father to AIDS-related illnesses. His sister died in 2002, when David was 22 years old.

“At that time we had very little information about HIV and AIDS,” he says.” He went to visit her at the hospital and was shocked at her wasted condition. One month later, she was dead.

“That’s what motivated me to help other people learn about HIV,” says David. “HIV education to the deaf community is very important. If normal hearing people get HIV material, and the deaf are left out, the deaf will suffer.”

David emphasizes that outreach to deaf people in this region must focus on sign language and pictures. He notes that much of the information about HIV is transmitted over television, which deaf people, obviously, cannot hear. And even when it is printed in newspapers, deaf people are still more likely to miss it because the formal education rate is lower among deaf people in this region, and many cannot read English.

“The challenge comes in when you meet a deaf person who cannot read or write, “ agrees Faith Oriwo, EGPAF’s prevention officer for Homa Bay. Faith is not deaf, but she communicates well with David and is becoming ever more fluent in sign language.

“When the Elizabeth Glaser Pediatric AIDS Foundation came to Homa Bay, and I came to the district hospital, I realized that I had 15 deaf clients,” continues Faith “I saw that there was a problem with communication, and I found David.”

At that time, David was running a community-based organization that focused on testing deaf people for HIV, and he had a diploma in HIV/AIDS Control Management and Social Work. David volunteered to help facilitate deaf support groups in the area.

Irene Ikinyi, 29, is a member of the Kendu Bay deaf support group. She lives with her grandmother and her 3-year-old daughter, Florence. Since it is hard for deaf people to find work, she helps her grandmother around the house in exchange for food and clothing. Her brother, who is also deaf, watches the livestock.

Irene had tested positive for HIV in 2010, but did not adhere to her antiretroviral treatment or return to the health center for check-ups. When Irene became pregnant in 2012, her grandmother brought her to the health center for prenatal care, and Irene was enrolled in prevention of mother-to-child transmission of HIV (PMTCT). At that time, she was also linked to Faith and to the deaf support group. Since that time, she has been adherent to treatment and a reliable member of the support group, especially nurturing the children who may feel isolated in their homes because of their deafness.

“I learned that an HIV-positive mother can give birth to an HIV-free baby if she follows the drugs and visits [the health center] early for care and treatment,” says Irene, signing to David. “After the baby tested negative for HIV [at 18 months]. I felt good. I feel relieved, happy.” Irene says that she hopes that her daughter, who is hearing, will grow up to be a nurse or a doctor.

Irene says that the stigma of being deaf is greater for her than the stigma of living with HIV. She explains that it kept her from seeking treatment when she was sick because she felt that she could not communicate to the health workers. Through the efforts of Faith, David, and the staff at the hospital, she now feels welcome.

“We have two kinds of stigma [as deaf people], self-stigma and community stigma,” says David. If I don’t want to go try to get information from people who are hearing, that is self-stigma. I think: ‘I am deaf … how will I communicate? Who will help me communicate? I don’t want to go there.’ Especially if you lack English skills.”

“And if hearing people ignore me, that is community stigma. Health workers may not be sensitive to deaf people. They've identified that you are deaf, and instead of helping you they refer you other people. You are not really seen as part of the community.”

“But if deaf people know that the center is friendly to them, they go,” he says.

TREATMENT FOR ALL IN KENYA

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Walking along the corridors of Ndhiwa Sub County Hospital in Homa Bay, Kenya, Julius Omuga greets patients with hearty handshakes; his presence creating an air of familiarity and warmness.

Julius is a HIV testing counsellor whose job entails linking people who test positive for HIV, to treatment. Through counselling, he helps patients who suffer from shock and denial after learning their HIV status to better understand the benefits of treatment and starting anti-retroviral therapy (ART).

Omuga also provides counselling after testing on adherence, disclosure and living well with HIV. He follows up with clients who defer starting treatment through phone calls and home visits, and links them to their facility of choice.

According to Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) Technical Advisor for adolescents, Job Akuno, some people who test positive for HIV may not want to start treatment immediately because they have not fully accepted their status; they may have fears about the side effects of treatment.

“It may also be that they may not have felt sick and see no urgency for starting ARVs,” said Job Akuno.

The death of his wife from AIDS-related complications, he revealed, motivated him to help people who are living with HIV, to get on treatment.

“[When] my wife died in 2003, she had not accepted her HIV status and was not on [antiretroviral medications] (ARVs),” says Omuga.

Research has shown that starting ART early has many benefits for HIV-positive individuals, such as: prolonging life, overall improved health long term, and ART can help those who are HIV-positive to reduce the risk of transmitting the virus to others.

Challenges Linking Children and Adolescents to Treatment

“Stigma and discrimination are contributing factors to low uptake of HIV testing and counselling services, as well as poor enrollment into treatment, especially among the youth,” says EGPAF Technical Advisor for Prevention, Polycarp Musee.

“Some parents feel that ARVs may be too strong for their child so they put off starting their children on treatment until they are very sick,” he said.

EGPAF endeavors to promote access to HIV treatment and ending AIDS in children. The Kenya AIDS Indicator Survey 2012 showed that 16 percent of people living with HIV and in need of ARV treatment in Kenya, are adolescents and youth.

Following the launch of the new treatment guidelines in July by the National AIDS Control Council, anyone who tests positive for HIV will be put on treatment immediately; meaning many more Kenyans will now qualify to start ART.

“Around 84,000 clients including 5,491 children currently in care, are now eligible for ART initiation according to the Kenya Health Information System June 2016,” said Michael Waweru, EGPAF Director of Strategic Information and Evaluation.

EGPAF, through the county government supports 188 HIV testing counsellors in Homa Bay and Turkana. EGPAF has helped the clinics to build their capacity by hosting trainings, providing them with monthly stipends and calling cards.

Expanding access to treatment for all infected with HIV is at the heart of UNAIDS targets for 2020. These targets consist of getting:

  • 90% of people living with HIV being aware of their HIV infection,
  • 90% of those receiving antiretroviral treatment, and
  • 90% of people on ART having no detectable virus in their blood.

“According to UNAIDS estimates, expanding ART to all people living with HIV and expanding prevention choices can help avert 21 million AIDS-related deaths and 28 million new infections by 2030.” (WHO, 2015)

Q & A with First Lady of Ghana and OAFLA President, H.E. Dr. Nana Lordina Dramani Mahama

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The Organization of African First Ladies (OAFLA) was founded by 37 African First Ladies in 2002 as a collective voice for Africa’s most vulnerable people: women and children infected and affected by HIV and AIDS. OAFLA works to enable African First Ladies to advocate for effective policies and strategies toward ending the AIDS epidemic as a public health threat, reducing maternal and child mortality, and empowering women and children through strategic partnerships in the spirit of solidarity.

EGPAF got an opportunity to talk with the First Lady of Ghana and OAFLA President Lordina Dramani Mahama about her experiences with OAFLA, and the progress being made to end AIDS in Ghana and across Africa.

Q: What achievements are you most proud of contributing to as First Lady?

A: I have worked to bring a range of health services to the doorsteps of communities across my country that previously lacked access and resources. We’ve seen tremendous success by using an integrated health approach and reaching populations at the events, festivals, and public spaces where they assemble. There they can access many different services for free including: HIV Testing Services, Syphilis Testing, Breast and Cervical Cancer Screening and Family Planning Services. The services provide more than just health screenings because they are coupled with advocacy, awareness raising and in depth education on HIV prevention and the prevention of mother to child transmission of HIV in particular. These services seek to benefit populations holistically, and long-term.

Q: In your position, what notable progress have you seen in the effort to end paediatric HIV and in the epidemic at large over recent years?

A: Since 2011, global leaders made a historic commitment before the world to end HIV infections among children. My husband was among these leaders as the then Vice President of Ghana. Through this commitment, there were conscious efforts by countries to prioritize the elimination of mother-to-child transmission of HIV through increased allocation of funding and scaling up services to ensure universal access.

Progress has been made, with a couple of countries achieving elimination. Unfortunately West and Central Africa still lag behind, but with continued and accelerated efforts this can change. We must persist in our efforts.

Q: What is the most urgent thing that needs to be done in the next several years in order to continue progress towards ending AIDS in children?

A: To end AIDS in children means we need to stop new infections in children; no child should be born HIV-positive, no child should die as a result of AIDS or related illness.

Countries need to align their national treatment guidelines with the World Health Organization’s (WHO) recommendation for immediate treatment, regardless of viral load, CD4 count, or clinical stage, for HIV-positive children younger than age five.

Q: What actions will you take to make sure these goals are met?

A: As OAFLA President, my colleagues and I, as First Ladies, have been organising side meetings during high-level programs such as UNGA and ICASA to facilitate important partnerships for Maternal, Neonatal and Child Health; and to advocate for early infant diagnoses and availability of medication.

I continue to spearhead the need to empower women and girls to prevent HIV and gender-based violence.

The first ladies and I will continue to embark on high level advocacy with national and community leaders to support elimination of mother-to-child transmission (eMTCT) and other interventions and also challenge stigma by engaging celebrities and people living with HIV as ambassadors.

However, we cannot achieve this without government commitment. There must be country owned efforts to eliminate HIV in women and children. Strong leadership, joint accountability and ownership is critical.

Q: As President of OAFLA, what challenges have you seen when it comes to efforts to address the elimination of mother-to-child transmission of HIV and what are you and other first ladies doing to address them?

A: What we’ve discovered is that lack of information or knowledge about HIV still persists in communities despite efforts being made to educate populations on both prevention and treatment.

Ignorance and Illiteracy

Through my campaigns, I realized that even though PMTCT services were available in the communities, people were not aware of the services. In some cases, many people were unaware that it was possible for an HIV positive pregnant woman to give birth to an HIV negative baby.

As a result, the campaign sought to educate the communities about PMTCT services and we saw an increase in uptake of services after each campaign.

Knowledge of HIV Status

Knowledge of HIV status is important for pregnant women and their partners to access the appropriate treatment and care for themselves and their unborn infants. Not knowing one's HIV status acts as a barrier to PMTCT services. My community-level advocacy and awareness raising is always coupled with opportunities for HIV testing for families.

HIV-related Stigma and Discrimination

HIV-related stigma and discrimination affect a pregnant woman's decision to access services and interrupt adherence to treatment and retention in care.

To combat this, I involve persons living with HIV, “Heart to Heart Ambassadors”, who have publicly made their status known to educate communities about the need to access services, using their life stories as examples.

Q: Why is the elimination of new HIV infections in children a priority for OAFLA?

A: Up to 90% of all infants and children with HIV are infected by their HIV positive mothers. In the absence of any interventions, more than half will die before their second birthday.

The provision of a comprehensive eMTCT services is so important. Unfortunately, many people do not have information about available HIV services and accessibility is a challenge in many parts of Africa. 

OAFLA firmly believes in scaling up effective elimination of mother-to-child transmission of HIV services globally to reduce rates of transmission to less than 5% annually, while at the same time improving overall maternal and family health. 

Eliminating mother-to-child transmission is the surest way to attain a generation free of HIV.

On the Road to an AIDS-Free Generation, WhatsApp Shortens the Distance

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Turkana, Kenya’s largest county, juts out of Kenya’s barren northwest into Uganda, South Sudan, and Ethiopia. Swaths of the county are regularly beset by drought, flash floods, and bandits. The infrastructure is poor, with the cratered tarmac on some roads dating back 50 years, making travel between settlements long and perilous. The Internet is nearly a myth out here: email messages stall out; phone calls fail to connect.

This environment is challenging for public health partners working to end HIV and AIDS. In the past, HIV test kits and antiretroviral medication frequently ran low at far-flung locations. Patient data painstakingly entered into paper ledgers were rarely, if ever, analyzed to identify service gaps and strategize improvements. Resupplying facilities and addressing clinical issues happened only after significant delays.

In response to this reality, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) recently turned to social media to strengthen Turkana’s health network. Teams throughout the county now share data and ideas through WhatsApp, a free mobile messaging app.

WhatsApp’s popularity has skyrocketed in recent years, particularly after its acquisition by social media giant Facebook. In February 2016, there were 1 billion reported active WhatsApp users globally. The platform supports 53 languages with 1.6 billion images and 250 million videos shared through it each day.  While most people use WhatsApp to keep in touch with family and friends, EGPAF and Kenya’s Ministry of Health are using it to keep medical and monitoring records in Turkana up to date.

“It was a strategy that was devised by the EGPAF office,” says Joseph Ekeno, the HIV testing services (HTS) supervisor at the Lodwar County Referral Hospital. “You never have a problem with the cellular network using WhatsApp. Even when the network is slow, you can use WhatsApp.”

WhatsApp bridges the information gap, connecting field officers to headquarters and transmitting reports to the Ministry of Health. This has reduced the reporting cycle from one month to one day, allowing program managers to more effectively address data or health service delivery issues.

“Basically we have various groups, even technical working groups set up on WhatsApp,” says Ekeno  “It is purely for work. Whenever there is information that I need to pass to [HTS counselors], I can do it through WhatsApp, quickly. We are also able to efficiently relay CME [continual medical information] to health workers so that they can constantly improve.”

“Because of distance, we don’t meet in person regularly,” says Ekeno of his team. “Maybe we meet once in a month … but before the month elapses, we need certain types of information from those people. In that case, there is a template that [team members] fill with data. Someone takes a photo of the report and sends to us through What’s App. Then we print it out, we key it into our database, and I send the information to the M&E (monitoring and evaluation) officers at the EGPAF office.”

“As an HTS provider, you are actually able to report the number of patients you test in a day, and it becomes a way to monitor the program” and make corrections and improvements, says Ekeno.

“The reports are very important in terms of the decision making,” agrees Jonathan Longi’ti, EGPAF’s service delivery officer based in Lodwar. “You cannot make decision without reports, and if you wait to make decisions until the month’s end you may miss opportunities. For us to improve the program, we have to know the data. Are we doing well in terms of testing everyone? Are there issues in terms of staff or workload?"

“With the information sent through WhatsApp, the office can easily identify a gap and make sure that the gap has been rectified—for example deploying another person to a facility or making sure that an HTS counselor has all of the supplies that are required.”

In a region where travel by foot or by camel is common, social media is shortening the kilometers and ensuring that every member of every family has the opportunity to be tested for HIV and be linked to care, if needed.

Improvements in mobile platforms and other technology-based health solutions are increasing and sustaining the momentum to finally end AIDS.

EGPAF works in Turkana County, Kenya, under the Pamoja Project, which is funded by the U.S. Centers for Disease Control and Prevention (CDC) through the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). The Pamoja Project seeks to strengthen management, oversight, and implementation of high-quality, comprehensive, and sustainable HIV services in Kenya. The project focuses particularly on regions where HIV prevalence is high or where populations are underserved by health services.

Social Protection for Children Must Benefit Children

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On August 25 - 26, 2016, Nairobi, Kenya hosted the second East African Community (EAC) Child Rights conference organized to launch the EAC Child Policy (adopted in March 2016) and to access progress towards realization of Child Rights in East Africa.

The conference’s theme, ‘Coordinated and Sustained Investments on Children’, featured child sensitive and HIV-inclusive social protection (policies and programs designed to reduce poverty and vulnerability by promoting efficient labor markets, diminishing people's exposure to risks, and enhancing their capacity to manage economic and social risks, such as unemployment, exclusion, sickness, disability and old age), thanks to the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), Africa Platform for Social Protection and Regional Inter Agency Task Team on Children and AIDS in Eastern and Southern Africa (RIATT - ESA), all of whom are part of the Inter Agency Working Group on Children’s Issues in the EAC.

Study findings presented by RIATT - ESA show that sustainable age-specific social protection can enhance adherence to HIV treatment and improve health outcomes for children and adolescents.

“While social protection promotes access to health for children, only one third of children in the world have access to social protection,” Dr. Tavengwa Nhongo, Director for Africa Platform for Social Protection, said.

EGPAF supported three young people from the foundation’s Kenya program to share their experiences of being diagnosed and growing up with HIV – to show how, despite their HIV status, social protection has enabled them to thrive.

One adolescent who was infected with HIV through mother-to-child transmission, narrated how psychosocial support groups – which are part of social protection measures - helped her deal with stigma and gave her courage to live her life.

“The most painful is being stigmatized by family,” Barbra Too, a partially orphaned, HIV-positive young girl said.

“When my family learned I had HIV, I was given my own plate, cup and my own place to sit,” Barbra told the conference delegates.

“Since I have known and accepted myself, our parents and government should accept us. Having HIV is not the end of life.”

At the conference it was emphasized that social protection for children must be beneficial to children and their caregivers, and discussions were held on the package of services for vulnerable children and youth in East Africa that is being developed.

A delegate highlighted the fact that Kenya is working on a new law on social protection to replace the existing Social Assistance Act that is not broad enough to include child-sensitive social protection issues raised at the conference.

Children speakers from South Sudan made passionate appeals for rights of children fleeing from conflict situations to be guaranteed in every EAC member state.

Coming nearly four years since first Child Rights Conference, held in September 2012, the conference was attended by delegates from Kenya, Uganda, Burundi, Tanzania and South Sudan.

Among the recommendations of the conference were:

  • Development of an EAC plan of action to guide the implementation of the EAC Child Policy at national level
  • Enactment of a regional Child Rights Law by the East Africa Legislative Assembly (EALA) to Ensure equal treatment for all children in the region and ensure social protection interventions
  • Policies and programs in all partner states are HIV-inclusive
  • Social protection services must be flexible, age appropriate and context specific

The East African Community is a regional intergovernmental organization of six partner states: Burundi, Kenya, Rwanda, South Sudan, Tanzania and Uganda, that aims to deepen and widen co-operation among partner states in various spheres for their mutual benefit including political, economic and social.

“It is gratifying to note that EAC has prioritized the promotion and protection of the rights of the child, " said Rhoda Igweta, Associate Director for Policy in Africa for EGPAF.

EGPAF, with programs in four of the partner states, has been working with the EAC through the Inter Agency Working Group on Children’s Issues to ensure that the EAC has in place the policy frameworks to facilitate the implementation of child rights in the region.


Senior US Officials, Members of Congress & Partners Recommit to Ending AIDS Among Children

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UNAIDS and the Elizabeth Glaser Pediatric AIDS Foundation hosted a high-level Congressional briefing in the United States Senate to increase momentum around an ambitious Super-Fast-Track framework—Start Free, Stay Free, AIDS Free. The initiative, which was launched by UNAIDS, the United States President’s Emergency Plan for AIDS Relief (PEPFAR) and partners in June 2016, outlines a set of time-bound targets to reach in order to stop new HIV infections among children, prevent new HIV infections among adolescents and young women and ensure access to antiretroviral treatment.

The Start Free, Stay Free, AIDS Free initiative builds on the progress made under the Global Plan towards the elimination of new HIV infections among children by 2015 and keeping their mothers alive (Global Plan). The Global Plan made a major contribution to a 60% reduction in new HIV infections among children since 2009 in the 21 countries in sub-Saharan Africa most affected by the epidemic. Speakers highlighted the need to keep up the momentum, warning that complacency could reverse the important gains that have been made.

Michel Sidibé, Executive Director of UNAIDS, brought attention to the need to increase access to treatment for children. He said that despite the treatment scale-up for children, which has grown twofold in the past five years and resulted in a 44% reduction in AIDS-related deaths among children, one in two children living with HIV still does not have access. Without immediate access to treatment, about 50% of children infected at birth will die by age 2.

Senators Edward Markey and Benjamin Cardin, honorary co-hosts of the briefing, and Congressman James Himes referred to the commitment of the American people through PEPFAR, and the important results that have been achieved through the strong partnerships with the countries most affected by the epidemic. Monica Geingos, First Lady of Namibia, expressed appreciation for the support of PEPFAR and UNAIDS in Namibia, and emphasized the need for continued engagement to address challenges related to HIV prevention, inequality and harmful gender norms. Namibia is a leader in the response to HIV and one of six countries—together with Botswana, Mozambique, South Africa, Swaziland and Uganda—that have reached 90% or more of pregnant women living with HIV with life-saving antiretroviral medicines.

Deborah Birx, United States Global AIDS Coordinator and Special Representative for Global Health Diplomacy, presented data illustrating dramatic recent achievements in stopping new HIV infections among children, and described evolving epidemic dynamics that demand new approaches so that the next phase of the response is successful in addressing the needs of the largest generation of young people the world has ever seen.

Director of the National Institute of Allergy and Infectious Diseases, Anthony Fauci, shared an overview of the science behind each pillar of Start Free, Stay Free, AIDS Free, showing that the world has the tools required to achieve the targets. Further innovations in treatment and prevention science hold the promise of accelerating the response by making commodities and services easier to access and use, and overall more effective.

Speaking in his capacity as a board member of the Elizabeth Glaser Pediatric AIDS Foundation, former Senator Christopher Dodd reflected on the bipartisan political commitment behind PEPFAR and the courage demonstrated by a number of elected officials at a time when AIDS was considered to be a difficult and controversial issue. He emphasized that this commitment must be constantly reinforced until the vision of an AIDS-free generation is achieved.

QUOTES

“WITH START FREE, STAY FREE, AIDS FREE, WE HAVE THE POWER TO ENSURE IN THE FUTURE THAT NO ONE IS BORN WITH THIS DISEASE. A FUTURE WHERE THOSE WHO ARE HIV-POSITIVE REACH VIRAL SUPPRESSION. A FUTURE WHERE NO ONE DIES OF AN AIDS-RELATED ILLNESS. A FUTURE WHERE THERE IS NO DISCRIMINATION AGAINST THOSE WITH THE DISEASE. A FUTURE WHERE CHILDREN WILL HAVE TO LOOK TO THE HISTORY BOOKS TO FIND THAT THERE EVER WAS SUCH A DISEASE CALLED AIDS.”

EDWARD J. MARKEY UNITED STATES SENATOR

“AIDS WAS A DEATH SENTENCE NOT TOO LONG AGO, BUT WE HAVE CHANGED THE LANDSCAPE. WE DID THAT WITH THE COMMITMENT OF CONGRESS IN A BIPARTISAN WAY THROUGH THE UNITED STATES PRESIDENT’S EMERGENCY PLAN FOR AIDS RELIEF, COMMITTING CONSEQUENTIAL RESOURCES TARGETED TO THE COUNTRIES THAT WOULD MAKE A DIFFERENCE FOR THE EPIDEMIC. WE CAN TAKE A MOMENT TO CELEBRATE THIS MORNING, BUT BY THIS AFTERNOON IT IS BACK TO WORK BECAUSE WE ARE NOT FINISHED YET. TOO MANY PEOPLE ARE STILL SUFFERING TODAY. WE WANT CHILDREN TO STAY AIDS-FREE, AND WE KNOW HOW TO GET THAT DONE.”

BENJAMIN L. CARDIN UNITED STATES SENATOR

“WE MUST MAKE SURE THAT WE DO NOT BECOME THE VICTIMS OF OUR OWN SUCCESS, BECAUSE IT IS ONLY PARTIAL SUCCESS. THE ONLY THING THAT CAN STOP US FROM OUR GOAL IS COMPLACENCY AND DISTRACTION. START FREE, STAY FREE, AIDS FREE IS ONE OF THOSE THINGS THAT IS GOING TO ALLOW US TO FINALLY PUT THIS DISEASE IN OUR REAR-VIEW MIRROR AND IN HISTORY WHERE IT BELONGS.”

JAMES HIMES UNITED STATES CONGRESSMAN

“PROGRESS IS FRAGILE AND THE WORST CONSPIRACY WE HAVE TODAY IS COMPLACENCY. WE HAVE TO REACH THE MOST MARGINALIZED WITH HIV SERVICES AND CHANGE THE SOCIAL NORMS TO BREAK THE CYCLE OF VIOLENCE AND ABUSE THAT ARE MAKING WOMEN AND ADOLESCENT GIRLS MORE VULNERABLE TO HIV.”

MICHEL SIDIBÉ UNAIDS EXECUTIVE DIRECTOR

“POVERTY AND INEQUALITY CONSTITUTE A RECOGNIZED CAUSE AND CONSEQUENCE OF HIV. THIS CORRELATION MEANS THAT AN HIV-FREE GENERATION FOR US MUST BE A GENERATION THAT IS FREE FROM POVERTY. IT’S A GENERATION THAT MUST BE FREE FROM GENDER INEQUALITY. IT’S A GENERATION IN WHICH GIRLS MUST HAVE EQUAL ACCESS TO EDUCATION. AN HIV-FREE GENERATION TOMORROW REQUIRES OUR COLLECTIVE LEADERSHIP TODAY.”

MONICA GEINGOS FIRST LADY OF NAMIBIA

“THE CHALLENGE IN MANY COUNTRIES IS HOW TO BUILD HEALTH CARE AROUND WELLNESS, THE POTENTIAL OF PRIMARY CARE FOR EVERYONE. MANY YOUNG MEN AND YOUNG WOMEN UNDER 30 DON’T KNOW THEIR HIV STATUS. THE LOWEST HIV TESTING RATE IS AMONG MEN BETWEEN THE AGES OF 24 AND 35. THESE ARE GROUPS THAT WE NEED TO FIGURE OUT HOW TO REACH—THE 15- TO 24-YEAR-OLD ADOLESCENT GIRLS AND YOUNG WOMEN, THOSE 24- TO 35-YEAR-OLD MEN WHO FEEL HEALTHY AND DON’T BELIEVE THEY ARE SICK. FIND OUT HOW TO CONNECT THEM TO TESTING FOR HIV WHEN THAT IS OFTEN THE LAST THING THEY WANT TO HEAR ABOUT. THAT IS A TASK THAT WE ALL HAVE TO ACHIEVE TOGETHER.”

DEBORAH BIRX UNITED STATES GLOBAL AIDS COORDINATOR AND SPECIAL REPRESENTATIVE FOR GLOBAL HEALTH DIPLOMACY

“IF YOU FOLLOW THE SCIENCE, WE WILL BE ABLE TO CHANGE THE EPIDEMIC AS WE KNOW IT NOW WITH AN EXTRAORDINARY DECREASE IN THE PROJECTIONS. AND IF WE DO THAT, WE WILL BE ABLE TO REALIZE THE GOALS OF START FREE, STAY FREE, AIDS FREE.”

ANTHONY FAUCI DIRECTOR, NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES

“WE HAVE MADE POSSIBLE WHAT WAS PREVIOUSLY THOUGHT TO BE IMPOSSIBLE—AND TODAY WE CELEBRATE THAT GREAT SUCCESS. BUT OUR WORK IS NOT OVER. WE MUST CONTINUE TO WORK HARDER, AND SMARTER, TO GET TO WHAT WE KNOW IS ACHIEVABLE. AND THAT IS A WORLD WHERE NO CHILD HAS AIDS.”

CHRISTOPHER DODD FORMER UNITED STATES SENATOR, BOARD MEMBER, ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

Originally posted by UNAIDS: http://www.unaids.org/en/resources/presscentre/featurestories/2016/september/20160916_startfree

Five Ways Health Care Workers are Improving HIV Services for their Community in Malawi

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Despite Malawi’s success in expanding HIV prevention, care, and treatment services, the proportion of people living with HIV who know their HIV status is only 53%; well below the 90% target set in the country’s Strategic Plan for HIV and AIDS. Malawi aims to meet the ambitious 90-90-90 targets released by UNAIDS in 2014.

To reach the target of diagnosing all (or at least 90% of) people living with HIV, Malawi is scaling up provider-initiated testing and counseling (PITC).

In order to meet facilities’ needs for more staff dedicated to HIV testing and treatment services, Malawi organized a small group of lay citizens to be trained as HIV diagnostic assistants (HDAs) to focus on PITC, identification of people living with HIV, and linkages to care and treatment.

With funding from the President’s Emergency Plan for AIDS Relief (PEPFAR) through the United States Centers for Disease Control and Prevention (CDC), EGPAF-Malawi engaged two local organizations, Lighthouse, and the Malawi AIDS Counseling and Resource Organization (MACRO), to recruit, train, and deploy 164 HDAs to 63 priority health facilities in seven districts.

HDAs provide HIV testing and counseling at health facilities, but at Ekwendeni Community Hospital, HDAs are exceeding their duties to enhance HIV services for their clients. Here are five ways that HIV diagnostic assistants at Ekwendeni Community Hospital are helping to end AIDS:

1. Diagnosing Mothers

With the help of HDAs, Ekwendeni Community Hospital increased HIV testing services at the antenatal care (ANC) clinic for pregnant mothers by 184%.  Ekwendeni tested 1,841 women at ANC from January to June 2016, almost twice as many as were tested during that same time period in 2015. Olipher Nkhata, a then mother of two, was pregnant with twins when she was offered an HIV test at her antenatal appointment. She tested positive, and was started on antiretroviral therapy (ART) that same day.  

2. Ensuring Supplies are Always Available

Stock-outs, or times when HIV testing supplies run out at a facility, can be a common occurrence.  Through the use of a daily activity register, HDAs track supplies used each day, keeping facility drug store in-charge informed of when supplies are running low and reorder from drug store. 

3. Reaching More Clients with HIV Testing and Counseling Services

After the introduction of HDAs at Ekwendeni Community Hospital, 230% more clients received services from January to June 2016 compared to the same time last year. The availability of HIV testing in multiple wards means sick patients do not have to go far to receive services, like Agness Moyo who was tested for HIV by HDA, Joshua Ngulube, when she was admitted into the female ward for feeling ill. Her mother died from AIDS-related illnesses and her father had been on ART, but at 20 years old, Agness had never been tested for HIV. Joshua tested Agness, and learned that she, like her father, was living with HIV. With emotional support and encouragement from Joshua and her aunt, Agness started ART and is now beginning to accept her status.

4. Linking Youth to Services

Ekwendeni Community Hospital has two active youth clubs, both clubs meet once a month and have about 50 members each.  Topics discussed amongst youth each month include: psychosocial support techniques, goal setting, nutrition, drug adherence, and reproductive health. In addition to offering testing services at the hospital, HDA Joshua Ngulube also coordinates both clubs.  He advocates for his clients, like Agness, to participate in the clubs as a way to gain knowledge and acceptance of their status amongst peers.

5. Providing Peer Support for Community Members

HIV positive clients often admit to HDAs that health facilities can be intimidating due to stigma against people who are sick. HDAs are normally from the communities in which they work, and their familiarity with clients makes them more approachable. HDA Victor Kaluwa explains that through his work at the health facility he communicates to peers that spending time with a person who is HIV-positive “doesn’t mean you’re exposed.” Victor makes a point of visiting and sharing meals with his clients. His congenial attitude in and out of the hospital makes him accessible to his clients, opening the facility doors to those otherwise fearful of pursuing HIV testing and counseling services.

 

Robert Mogha, Health Management Information Systems Officer at EGPAF-Malawi, works to monitor the success of the HDA program.  He says, “Since introducing HDAs to EGPAF facilities, we have seen a significant increase of the number of mothers attending the clinics and those identified as HIV-positive. HDAs have become a crucial facet to helping Malawi reach our first 90 target, and we couldn’t achieve it without them.”

Counselor on a Motorbike

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Alice Tinga welcomes us into her tiny earthen home on the outskirts of a Maasai village near Aitong in Narok County, Kenya. Alice, 37, is one of the founding members of a peer support group for villagers living with HIV. We are soon joined by Stephen Koitumet, the HIV community facilitator who works with the local health center, who has arrived by motorbike.

Seated on molded plastic chairs inside the home are Mary Kijolo, 45, and a teenage mother breastfeeding her newborn. We enter and curious children take turns sidling by the entrance to peer at us and giggle.

We explain to the women that we have come to learn about their experiences living with HIV. The young mother excuses herself and hurries off. Later, Koitumet tells us that she has not yet disclosed her HIV status to her husband and is struggling with self-stigma.

Misinformation and stigma have been deadly concerns among the Maasai—especially when compounded by the custom of wife-sharing and the semi-nomadic lives of the herdsmen. HIV statistics have been understandably difficult to gather from this population, but in 2008 Kenya’s National AIDS Control Council estimated that 30 percent of Maasai were HIV-positive.

“It has really killed a lot of people, especially age 40 and above,” says Koitumet, who is, himself, Maasai.

“That is why you see the bomas (homesteads) empty—because the owners of the bomas are gone. They didn’t believe that HIV was there so they collected ‘medicine’ from the bush instead of seeking treatment at the health center. They believed that if someone is HIV-positive, the person must be cursed.”

Koitumet was assigned to the Aitong Health Center two years ago through the PAMOJA Project. He is a lifeline to the villages surrounding the Aitong Health Center, about 9,200 people.

“My work is to make sure that people come to me when they test positive [for HIV],” says Koitumet. “I open a file for them [and] I start to follow them. I make sure that they are getting drugs.” He says that if one of his clients fails to show up on schedule, after two days he will drive out on his motorbike to find them and deliver their drugs. Some clients live as far as 50 kilometers away.

“Sometimes we hold a meeting or we go to the barasa (community meeting called by the chief) and we tell [the villagers] about HIV. We tell them about the way you are supposed to live. We also go to the family members [of people living with HIV] and counsel them. We tell them about the advantages of taking drugs and using family planning.”

Alice is grateful for his support: “Before, I could only get HIV information and services at the health center. But they didn’t have much time for me.”

“When the community facilitators came down to the village, my life changed. Before, I was very poor in adherence. I could not keep appointments. I am doing fine now. I have more knowledge.”

Once a month, Alice and Mary join five other HIV-positive women under a tree for a peer support group, facilitated by Koitumet.

“When you go to the support group, you receive those teachings that really help you to adhere to drugs,” says Alice. “When I first went to the support group, I saw people who were not adhering; they looked sickly, and I pitied them … I felt bad for them.”

“But if you adhere to treatment you feel comfortable and you look healthy, and you continue doing your own things.”

“Now we see a change compared to six or seven years ago,” says Koitumet. “We are counseling families—creating awareness of HIV and the importance of taking antiretroviral drugs."

 

EGPAF Ambassador Josephine Nabukenya Visits Capitol Hill

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Last week during her whirlwind visit to the United States, EGPAF Ambassador, Josephine Nabukenya, took time out of her busy schedule to join me on a visit to Capitol Hill. While the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) often engages with Capitol Hill to educate offices on issues and legislation related to pediatric AIDS. It is especially impactful to be able to bring someone to a meeting who has been personally impacted by HIV as well as EGPAF programs.

Josephine eloquently shared her story with several House and Senate offices, and participated in a roundtable hosted by the Congressional HIV/AIDS Caucus.

Josephine is no stranger to the halls of Congress—in fact in 2005 she testified at a hearing in the Senate on the President’s Emergency Plan for AIDS Relief (PEPFAR) program.

“From the beginning, the US government has been the leading donor in the fight of ending AIDS which is very crucial in both research and implementing different programs that have the target and goal of ending the disease,” says Josephine. “Ending the epidemic requires sustained attention, research and funding – the US Government has shown the leadership and capacity to help us achieve great things in this fight, and will continue to do so.”

Congressional staff were blown away by how Josephine was able to not just overcome the stigma and discrimination she and her family faced because of their HIV status, but that she continues to speak out and counsel other youth facing similar issues as they grow up with HIV.

Staff asked many questions of Josephine, including how she was stigmatized, the challenges she still faces, and the hardest aspects of life for children growing up with HIV.

She shared the struggles that many adolescents face when having been on treatment their whole life—they become fatigued and don’t understand why they should continue to take medicines when they look and feel fine. When a staffer asked her how she got through that period, she noted that she feels like she must be an example to others, especially younger children, so she always took her medicines.

“It was very important for me to go and meet different representatives at Capitol Hill because they make decisions and influence a lot of impact in my community,” said Josephine. “Therefore, me sharing my life experience with them was the best thing for me or any donor or policy maker would love to do. It created room for me as a beneficiary to interact with the decision makers openly thus letting them know what has been done, what needs to change and what can be considered.”

Josephine’s message was clear—being a child with HIV is a challenge, but with support programs like those through EGPAF and PEPFAR, children living with HIV can not only survive, but thrive.

 

EGPAF Quickens Its Pace in Cameroon

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In July 2016, Chip Lyons, the president of the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), traveled to Cameroon, for the ribbon cutting of a new office in Youndé, the capital city. EGPAF began working in Cameroon in 2000, with the historic Call to Action initiative that greatly expanded support for HIV prevention and treatment in the countries hardest hit by the pandemic.

Cameroon is a country of contrasts, from its Atlantic coastline to its western rainforests to its northern deserts. The official languages are French and English, with more than 1,700 traditional idioms. These geographic and cultural differences sometimes thwart efforts to deliver government services effectively. However, national response to the HIV epidemic—with support from organizations like the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF)—has helped unify the public health system and deliver health services to more people.

In 2000, EGPAF supported the first five prevention of mother-to-child transmission of HIV (PMTCT) health facilities in Cameroon—in partnership with Cameroon Baptist Convention Health Services (CBCHS). In 2002, EGPAF helped fund and coordinate the first national PMTCT conference in Cameroon, which led to the development of national PMTCT and pediatric HIV policy for Cameroon. Now EGPAF and CBCHS together support PMTCT services at 458 facilities across six regions (out of 10).

“We are proud of the enormous impact and progress these joint efforts have realized,” said EGPAF President Charles Lyons at the ribbon cutting. “Together, we have provided PMTCT services to more than 994,800 women and tested nearly the same number of pregnant women for HIV.”

Still, Cameroon has the highest HIV prevalence rate in central Africa, with 7.6 percent of pregnant women infected with the virus. Forty-six percent of women and 58 percent of men have never been tested for HIV, putting not only their own lives in danger, but the lives of their unborn children as well.

But change is coming quickly. The HIV infection rate is half of what it was five years ago. Now EGPAF and partners are sprinting toward the goal of zero new infections in children by 2020. Through funding from the U.S. Centers for Disease Control and Prevention (CDC), EGPAF has assembled a new team of HIV experts in Cameroon to lead technical assistance initiatives and amplify support to the government and other partners.

For example, EGPAF has established a training center at the Fondation Chantal Biya Mother-Child Centre in Youndé to ramp up capacity of health workers from around the country to diagnose, treat, and track clients living with HIV. In rural Bamenda, eight long hours from the capital, EGPAF is increasing the capacity of health facilities by training health workers, linkage officers, and lab technicians and placing them at crucial points of care. This allows medical staff to focus on treating clients with the assurance that those clients are being linked to the services they need and are followed to ensure adherence to treatment.

During the week prior to the launch of EGPAF’s new office, Lyons met with Youndé-based representatives from the Ministry of Public Health, UNAIDS, UNICEF, and other national and global partners. He also toured the Fondation Chantal Biya Mother-Child Centre for a direct view of the benefits of EGPAF’s technical assistance. On Friday, representatives from prominent health organizations gathered at the EGPAF office to re-inaugurate EGPAF’s work in Cameroon.

“EGPAF knows well the path that Cameroon has taken to arrive at this stage,” remarked Alim Hayatou, the secretary of state to the Ministry of Public Health in charge of epidemics and pandemics. “In this fight against AIDS, we have been side by side, day after day, action by action to improve the situation at hand. We are delighted to have EGPAF’s support.

“Cameroon is steadfast in our resolve to eliminate pediatric AIDS,” declared Sec. Hayatou.

Lyons was equally emphatic.

“I can say with confidence that our commitment has never been stronger to arriving at a future when every child, mother, family, and community in Cameroon is free of HIV,” said Lyons. “We can eliminate new HIV infections among children in Cameroon by reducing the number of children newly infected to less than 40,000 by 2018 and 20,000 by 2020. We can provide 1.6 million HIV-infected children with antiretroviral therapy by 2018.”

“Together, through the strength of the partnerships and bonds we’ve built, we can realize the end of AIDS in Cameroon,” said Lyons.

“The time to act is now.”

A Peer Educator in Rural Malawi

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Emily Njerengo is a peer educator in rural Malawi. She is living with HIV; she lost her two children and husband to AIDS-related illnesses. Emily credits a safe motherhood support group with having helped her move past her grief and find a purpose educating and counseling other women. She was trained by the Foundation for Community and Capacity Development (FOCCAD), a community-based organization that receives technical assistance from the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF).

“I visit several women of childbearing age each week,” says Emily. “I speak with them about how they can ‘live positively’ with HIV, and particularly about PMTCT [prevention of mother-to-child transmission of HIV], with the intention of sensitizing them on the long-term implications of the virus while emphasising the availability of treatment.

“FOCCAD helps us peer educators in our efforts by providing our clients with transportation to health centres and ensuring that the process is consistent.

“Agatha is one of my clients. She is an HIV-positive woman who has been through two home [births]. It took me five visits before she finally accepted the value of testing and counselling, so my friendly perseverance was crucial.

“As a peer educator interested in ensuring the prevention of mother-to-child transmission of HIV, I assist women like Agatha through the duration of the maternity process, from referring them to a doctor and ensuring their strict compliance with antiretroviral therapy, to assisting them through the process of breastfeeding and post-natal care.

“Maintaining comprehensive records helps me in scheduling my days, particularly in the light of the long distances I have to travel on foot. I can see up to two women every day.

  

“Apart from my job as a peer educator, I also engage in farming and operating a small eatery business that sells fritters. This is necessary because that my job as a peer educator is completely voluntary and I earn no income from it. This is worth it because it means I can share essential life-saving information with my community. It allows me to play my part in curbing the spread of HIV/AIDS, ensuring the community’s survival through future generations.

“I think of my late husband every day, and regularly say a prayer for him; it is in his memory that I dedicate myself to this work, in the hope that each of the people I touch can be saved from a similar demise.”

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Rural women, the majority of whom depend on natural resources and agriculture for their livelihoods, make up over a quarter of the total world population. The first International Day of Rural Women was observed on October 15, 2008. This day is meant to recognize “the critical role and contribution of rural women, including indigenous women, in enhancing agricultural and rural development, improving food security and eradicating rural poverty.”

Rural women are key agents for achieving the transformational economic, environmental and social changes required for sustainable development. But limited access to credit, health care and education are among the many challenges they face, which are further aggravated by the global food and economic crises and climate change. Ensuring their empowerment is key not only to the well-being of individuals, families and rural communities, but also to overall economic productivity, given women’s large presence in the agricultural workforce worldwide.
-UN Women

A Walk Through Points of Care

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Hellen Abura, 53, is a businesswoman and mother living in Homa Bay, Kenya. She purchases dagger fish on the beach in Mbita and transports them inland to sell. Hellen has been living with HIV for the past 12 years. Her husband died from an AIDS-related illness in 2004, but, thanks to strict adherence to her treatment, she has continued to lead a healthy, productive life. Fortunately, all of her four grown children are HIV negative.

Hellen’s health is monitored on a monthly at the nearby Homa Bay County Referral Hospital. With support from the Elizabeth Glaser Pediatric AIDS Foundation's (EGPAF) Pamoja Project, the hospital’s Comprehensive Care Centre (the HIV clinic) has deployed a real time, electronic system referred to as point-of-care electronic medical records. Through this system, the healthcare worker is able to enter data in real-time into the system as they’re seeing the patient.

When Hellen arrives at the hospital to regularly pick up her medication, she is met by a linkage officer, who acts as a concierge for HIV patients, connecting them to services and providing education and counseling. Hellen’s vital signs—pulse rate, temperature, respiration rate, and blood pressure—are measured and added to her electronic medical record. In addition, her body mass index (BMI) is measured to determine if she is underweight.

The health worker discovers that Hellen’s BMI is low. As a fishmonger living alone, Hellen struggles to earn enough money to buy food. To help her gain weight, her health professional gives her fortified flour. This supplemental food is an important aspect of the Pamoja Project, since ingesting HIV medication without food can result in unpleasant side effects. In addition, the medication is less effective in a body that is not adequately nourished.

Every three months, Hellen’s blood is drawn to test her CD4 count, which indicates the strength of HIV in her system. It also provides vital information for the chief medical officer as he determines the proper antiretroviral medications and dosages to keep Hellen healthy.

By the time that Hellen arrives at the pharmacy, her information is already in the system. The staff simply checks the computer and gives her the medicine that she needs.

By tracking clients like Hellen electronically, the health facility keeps detailed and more accurate records of its clients. The system flashes reminders for the clinician to ensure the client does not miss an appointment. Aside from the client spending less time at the facility, it also helps to  greatly enhance the quality of  care for the clients.

“The key message I have for any woman living with HIV is the importance of taking your medication,” says Hellen. “I have been taking it faithfully for ten years, and that is why I am alive and healthy now.”

The support Hellen receives through the Pamoja project helps her stick to a routine of care where her HIV diagnosis doesn’t hinder her ability to lead a long, fulfilling life.


Story of Hope: Baby Simon

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Tina Louise Dassé has been working as a community counselor since 2009 for Femmes Active, a local organization that works with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) at General Hospital of Koumassi in Abidjan, Côte d’Ivoire, under the Centers for Disease Control (CDC) and Prevention’s, Project Djidja. Louise has seen patients of all ages, social statuses, and genders—women, children, men, families, young, old—pass through the HIV testing and counseling services she provides.
One morning, Louise received a woman carrying her one-year-old child on her back. The mother courageously presented her child and asked for help.

Louise was close to tears, her heart seized with pity for the little boy who was on the brink of death. The child, named Simon*, had a bloated stomach, sign of severe malnutrition, a baldhead, was vomiting and dehydrated. He weighed just a little less than 5 kilograms (11 pounds) and looked more like a six-month-old baby. Given these common symptoms, Louise immediately suspected that the child was HIV positive. 

HIV infection in infants and children is usually transmitted from mother to child during pregnancy, at delivery or through breastfeeding. In general, physical symptoms of HIV in children include growth failure, various forms of infections that can be more or less severe, wasting, abdominal swelling, skin rashes, etc.

Louise was afraid to lose yet another young patient as she remembered the same scene a few years prior, when another mother came with an infant under the same conditions; the baby passed away shortly after Louise met him.

Louise did not waste any time and did everything in her power to save Simon's life. She urged his mother have herself and her child tested for HIV. The mother tested positive to HIV. Louise offered counseling and referred the baby to the pediatric ward for immediate handling of his symptoms.

Simon's father also came to the HIV testing and counseling office to support his wife. He was very worried about the health of his son. Simon’s father collapsed when the PCR test results were given; Simon was HIV-positive. 

Simon's father had only one question in mind: would his son survive? Simon was his first boy. Would he regain his health and be able to play and laugh as any other child? Would he be able to attend school? He was distraught. Louise used her vast experience to comfort the parents and to help them face the situation.

A week later the family returned to the hospital. Simon had not improved, in spite of the antiretroviral drugs prescribed to him. He had a severe cough and was much weaker. The family was sent to the anti-tuberculosis center where another trial awaited them. Simon was diagnosed with tuberculosis. The news was devastating to Simon’s parents.

Tuberculosis is an opportunistic disease most likely to affect HIV patients with a weak immune system and those affected by malnutrition.

Later, Louise contacted the family who had touched her heart as they had stopped coming to the hospital for several weeks now. Louise encouraged them to adhere to treatment for Simon and to not give up. She reassured them, and offered counseling on nutrition for their baby as he was undergoing various treatments.

Louise’s efforts were rewarded when only weeks later the family came to their medical appointment and Simon was showing signs of improvements. Simon’s improvements encouraged his family to continue regular medical appointments.

Three months later, Louise heard laughter and happy voices in the corridors of HIV testing and counseling office.

She saw a chubby little boy laughing, greeting everyone, and running in all directions. Louise laughed, played, and hugged the little boy. When she saw the boy’s mother behind him, she burst into tears. Louise realized that the little bundle of joy at her feet was none other than Simon. He was there in front of her, full of life.

Simon had almost tripled in size – weighing 15 kilograms ( 55 pounds), and played like a child of his age. He was alive.

His father was there as well and was very grateful to Louise. He knew now that his beloved son would live and would have a chance to go to school and live in good health.

Louise did not stop there; she offered again to test Simon’s father through the family approach technique. He finally agreed to an HIV test as he had witnessed improvements in his son’s health. Both parents were infected with HIV.

The family is now regularly attending medical appointments is adhering to treatment and striving.

*Named changed for privacy.

Read this story in French.

EGPAF in Mozambique Implements Communication Campaign to End AIDS

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The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in Mozambique is implementing the Accelerating Children Treatment (ACT) initiative in priority districts in the country’s Gaza province.

Initiated last year, ACT (thanks to funding from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and the Children’s Investment Fund Foundation (CIFF)), is aiming to double the number of children receiving lifesaving antiretroviral therapy (ART) across 10 priority African countries.

ACT includes community mobilization activities to promote the benefits of care and treatment in children, testing of children in trials and pediatric wards, and provision of care and treatment.

In addition, ACT integrates domiciliary visits to promote care and treatment adherence for pregnant women, infants and children with HIV.

Through ACT, EGPAF in Mozambique, launched a campaign specifically geared toward expanding HIV treatment for mothers and children called, “Mais Esperança para Criança”, which means, “More Hope for Children”.

More than 900 people were tested for HIV in Mozambique’s Gaza province during this campaign to sensitize community members and to increase people’s knowledge of their HIV status.

The campaign targeted heterogeneous groups -- namely, woman of childbearing age, pregnant women and infants, caregivers of children, and community leaders working to eliminate AIDS. The campaign lastly nearly two months and disseminated key-messages about the importance of testing, treatment, and adherence to HIV treatment.

Testing for HIV, malaria and blood pressure was provided. Additionally, the campaign demonstrated the importance of visiting health facilities by pregnant women and theirs partners.

Because EGPAF provides health services for mostly underserved and illiterate people, a communication campaign using theater exhibitions and roadshows was employed.
To help draw attention and support for the event, a popular Mozambique artist, Mr. Bow, produced and launched a song for EGPAF, titled “Yendla Xikambelo” which means “Testing for HIV” in English. The song relays the story of Mozambicans, who avoid visiting health facilities, because of fear of knowing the HIV result. The song encourages listeners to visit health facilities.

Additionally, the US Centers for Diseases Control and Prevention (CDC) hired the Clarisse Machanguana, a former basketball athlete, to help promote HIV awareness among adolescents in schools and at community events as a part of ACT. Her part of the campaign was entitled “Saber é Viver”, which means “Knowing is Living”.

According to EGPAF-Mozambique’s Senior Technical Advisor for Psychosocial Support & Community Program, Carlos Mahumane, the campaign was a challenge for the organization because it was meant to focus on specific and sensitive groups, including children who have little understanding of health or diseases. Key messages were sensitized first through parents and caregivers, in turn helping them to better reach their children. Mahumane believes that the campaign was a success.

Mahumane noted that in terms of testing results, adherence and contribution of public during roadshows and theatre exhibitions, which had 700 – 1,500 people at each event, research collected during the campaign discovered that people understood the objectives of ACT and how they can implement them in their own lives.

“We cannot continue to conduct business as usual if we want to end the AIDS epidemic,” said Charles Lyons, EGPAF president and CEO, “Children can’t be treated as miniature adults—they require medicines, care, and support that are age-appropriate and effective for their specific needs.”

EGPAF Mozambique hopes to continue implementing the ACT initiative through merchandising materials, with careful language and good tools. ACT has proven to be a sound strategy to end new HIV infection in Gaza province and Mozambique, and is particularly a critical strep toward ending AIDS in children.

EGPAF Celebrates Milestones in Kenya, Launches New 5-Year Project

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On October 28, 2016, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) celebrated milestones of its project, Pamoja. Pamoja is the Swahili word for “together”.

Funded by the US President's Emergency Plan For AIDS Relief (PEPFAR) through the US Center for Disease Control and Prevention (CDC), the six-year Pamoja Project aided in the testing of more than 1.4 million people for HIV and scaled up access to HIV antiretroviral treatment (ART), by starting more than 48,000 patients on HIV medicines in Kenya, particularly in Homa Bay County.

Mother-to-child transmission of the disease fell from 17% in 2011, to 7 % in 2016, protecting more than 4, 700 babies from being infected by their mothers.

Among the population started on ART, 83% achieved a viral suppression of undetectable levels.

The Kenya 2016 AIDS Report, released last month, showed ART coverage for children in Homa Bay at 76% compared to 63% for adults. The report also shows a drastic reduction of new pediatric infections, by 63% between 2013 and 2015, in Homa Bay County – marking a great achievement in the fight to end AIDS in children.

“Something good is happening in Homa Bay which the world can learn from,” said Charles Lyons, President and CEO of EGPAF. “If we can achieve this success in a high prevalence county within a country with one of the highest burdens of HIV, we can control the epidemic and end AIDS."

“[The] Pamoja Project is a proof that we can control HIV if we work in partnership and defeat the strongest enemy -- stigma and discrimination,” said Dr. Jackson Kioko, Director of Medical Services for Kenya Government’s Health Ministry.

To build on the success of Pamoja, a new five-year project has been launched.

Also funded by PEPFAR through CDC, this new project, Timiza90, (which means Reach90 in Sawhili), will build on the success of Pamoja in order to achieve the 90:90:90 goals by 2019.

The 90-90-90 goals aim to identify 90% of all people living with HIV; provide ART to 90% of those identified; and aims to ensure that 90% of all people living with HIV on ART to supress the virus.

With a $15 million (USD) allocation for the first year, the new Timiza90 Project is expected to enhance facility and household testing, and to heighten retention for those already on ART while also further reducing mother-to-child transmission of HIV to less than 2%.

“We will continue to prioritize and strategically position these new resources, to ensure the highest possible achievement towards HIV epidemic control,” said CDC Director in Kenya, Dr. Kevin De Cock.

The project is also expected to increase voluntary male medical circumcision (VMMC) to more than 80% and to support reduction of HIV transmission among key populations.

“Since we already know the formula of providing comprehensive services, we will accelerate the efforts through Timiza90 to reach our Year 1 target – aiming to test 912,000 individuals in Homa Bay,” said Dr. Eliud Mwangi, Country Director for EGPAF-Kenya.

Other Timiza90 2017 targets include:

  • Identify 26,000 previously undiagnosed HIV cases, including more than 3,700 in children
  • Start more than 23,000 adults and ~ 4,000 children on ART
  • Provide ART to 83,775 persons living with HIV
  • Provide ART to 7,400 HIV-positive mothers

“These efforts will allow the county to achieve its health goals and they will become a benchmark for other counties and regions affected by HIV,” said H.E. Cyprian Awiti, Homa Bay County Governor.

Learn more about the Timiza90 Project

View the Pamoja Project Photobook

“I Was Not Scared to Receive the Results”

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Fourteen years ago, at the height of the HIV crisis in Zimbabwe, Linda Ngerenge gave birth to twins. One year later, Linda’s husband and one of her twins passed away because of AIDS-related illnesses. At that time, Linda and her second twin were both diagnosed HIV-positive and were initiated on antiretroviral therapy (ART). Both are healthy today.

Linda, now 35, joined a Zimbabwe AIDS Prevention Project (ZAPP) support group and eventually became friends with a man who is also living with HIV and remarried. The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) works with ZAPP to reduce new HIV infections in children. ZAPP gives health education to the community: mothers, fathers, pregnant women, and even those who are already on antiretroviral treatment.

In 2007, Linda became pregnant again and, with the support of counselors at ZAPP, enrolled in a prevention of mother-to-child transmission of HIV (PMTCT) program. She gave birth to a boy, who is now 9 years old and HIV-negative. Two years later, Linda became pregnant again and gave birth to twin girls, Sharon and Sasha.

“When I was pregnant, I took it upon myself to adhere to ARVs [antiretroviral medication] and follow all the advice given by nurses and doctors from the clinic until the day I went into labor and delivered,” says Linda. “After delivery, I was very happy that I had safely given birth to twin daughters.

“I took both of them to the clinic for the HIV blood test at six weeks,” she says. “I was not scared to receive the results as I was convinced that I had done everything in my power to minimize the chances of transmitting HIV to my daughters.

“I received the results, and indeed both my daughters are HIV-negative! I was ecstatic because here in Zimbabwe a number of women have given birth to twins where one would be HIV-positive and the other HIV-negative. Then I took my twin daughters for a confirmatory test three months after weaning and they both tested HIV-negative. Now they are 7 years old and healthy!

Linda now volunteers as a ZAPP counselor.

“Within the community I am supporting other women living positively,” she says. “My focus is especially on pregnant women who have tested HIV positive, who may be stressed of being newly diagnosed to be HIV positive. I support them to accept their HIV status, using my life story and helping them to appreciate the possibility of also giving birth to children who are free from HIV.

“My message today to all women in Zimbabwe is ‘Do not be too scared to conceive and have children because of your HIV-positive status. Just follow the advice from nurses and doctors as well as adhere to HIV care and treatment as I did. Then you will also have children who are free from HIV.’”

EGPAF’s Ariel Clubs Keep Youth Alive

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In 1993, when Javis Ndugutse was three years old, he was diagnosed with HIV. At the time, Uganda did not have access to lifesaving antiretroviral (ARVs) drugs.

Fortunately, a combination of good nutrition and treatment of opportunistic infections such as cough – which was at tuberculosis, diarrhea, skin itching, kept Javis alive.

“I am grateful to my parents. They knew that medical attention and good nutrition was my only hope. They did this until ARVs for babies were brought to Uganda,” Javis explained.

But even when the drugs were introduced in Uganda, they were often hard to come by - queues were long and by the time Javis’s parents reached the pharmacy counter, the drugs were gone.

In 2003, the Ariel Club at Kihiihi Health Center IV in the Kanungu District of Uganda, opened its doors – for the first time in the area, children were separated from the adults; younger children from older ones, in order to receive appropriate HIV care and support.

Ariel Clubs are implemented by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in 14 districts in Uganda. The clubs, named after the daughter of Elizabeth Glaser, consist of support groups for children aged 5-18 who are living with HIV. They are designed to help HIV-positive children support each other. The clubs address the psychological and clinical needs of children so that they feel confident, stay on treatment, and prevent transmission of the virus to their own future partners or children.

“We realized that the care givers [in many clinics] didn’t understand the [unique] plight of the [HIV-positive] children,” said Patience Akampurira, who manages the Kihiihi Health Center Ariel Club.

The Ariel Club’s staff also recognized that as children grew up, they were unsure of how to handle life as adolescents, living with HIV.

Javis joined the Ariel Club when he was 17 years old. He had a girlfriend who was HIV-negative and didn’t know whether it was right or wrong to have unprotected sex with her.

“Through [my] Ariel [Club], I learned that I could infect her with the virus. I learned that a condom could protect us,” he says.

Javis also learned the importance of adhering to his drug regimen. He takes three ARV pills a day, as well as supplements to keep his body strong. The pills give him side effects, including headaches and stomach cramps, but missing a dose is dangerous.

“If you miss one dose out of every 20, you’re likely to develop resistance over time,” Javis says. “[Care givers at the] Ariel Club help to monitor this.”

At Ariel Clubs, children are separated into two age groups: 5 to 9 years, and 10 to 19 years, to enable them to receive appropriate services for their age. 

The children are registered and their files reviewed; there is group and individual counseling; counseling according to gender; CD4 and viral load analysis (testing the strength of the virus); health education; and refreshments. At the end of the day, they are given their drugs plus a transportation refund.

The children are encouraged to come once a month for more drugs. The drugs are free.

Now 23, Javis serves as a peer counselor.

“I counsel those who have no hope and remind them that HIV is not a death sentence.”

He also helps to distribute information, education, and communication (IEC) materials to youth and helps with record keeping at his own cost.

“He has inspired many young people to test for HIV and many others to live positively. He once convinced a youth who tested HIV-positive not to commit suicide,” says Denis Ayebare, a Medical officer at Kihiihi HCIV, who doubles as the tuberculosis focal person at the club.

Denis makes sure that the youngsters are on treatment, investigates and treats tuberculosis and ensures that they are adhering to their drugs.

More than 200 children are members of the Ariel Club where Javis volunteers. Each of the children is attached to a Village Health Team (VHT) member and a linkage facilitator.

“[Personalized support from the Ariel Club has] improved retention and treatment of the children. There’s also reduced stigma because the children share experiences,” explains Moses Kabushenga, a VHT member at the Kanywantorogo Health Center III in Kanungu.

The Kihiihi Health Center IV is supported by the Elizabeth Glaser Pediatric AIDS Foundation, with funding from USAID–RHITES, through Uganda’s Ministry of Health.

The program provides funds for drugs, VHTs, linkage facilitators, building capacity of health workers to deliver treatment, transportation and refreshments for children.

Disclosure Means Life

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Gertrude Mwiinga, 40, says that she used to be ashamed about living with HIV and was afraid to tell her son, Sholdon, that he, too, had been infected with the virus. However, through the support of health workers at the Mbuya Daisy site in Mukuyo, Zambia, she found the strength to help him accept his HIV status.

“Before Mbuya Daisy, I used to hide my son at home and tell him, ‘You are suffering from chest pains, you are having a headache, and this is why you are taking these drugs,’” says Gertrude. “I didn’t want to disclose the [HIV] status of my child. But from the day I started coming to Mbuya Daisy, it was easy for me to disclose the status to my boy.”

“I used to suspect that maybe I had the HIV virus because they were giving me these drugs every day,” says Sholdon. “My mother used to tell me that I was suffering from malaria.”

In the 1990s and early 2000s, HIV devastated families like the Mwiingas. Husbands and wives became infected with the virus and unknowingly transmitted HIV to their children. Antiretroviral therapy medicines (ARV)s weren’t freely available, and families struggled simply to stay alive. Youth like Sholdon were left behind, disempowered.

Many parents kept a secret from their HIV-positive children—a secret that could kill.

The Mbuya Daisy program, funded by the U.S. Centers for Disease Control and Prevention (CDC) and implemented by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), empowers families like the Mwiingas to disclose their HIV status, both within the family and within their communities. The Mbuya Daisy adults group meets once a month at the Mukuyu Rural Health Centre, and the children’s group meets twice a month. Participants learn about how HIV affects their bodies, about the importance of adhering to their ARV regimens, and about strategies for disclosing their HIV status and the status of their children. 

The Mbuya Daisy program helped Gertrude tell her son the truth. But it was nearly too late.

“I had stopped taking the drugs,” Sholdon says, who is now 20. “But when my mother told me about the importance of taking the drugs, I started again. And I’ve even encouraged other friends to continue taking their drugs.”

“He quit, because his parents were lying to him,” says Lawrence Kaluwa, a community health worker and founder of the Mbuya Daisy group in Mukuyu. “He started hating the medicine, he never took the medicine, until this program was introduced. And then it was easy for the mother and the other parents to disclose the importance of the medicine. At last he started to take his medicine.”

“I really encouraged [Sholdon] to come and join the support group for the adolescents because he will be able to go and teach other friends about prevention and transmission of HIV. He is very open to his friends now,” says Gertrude. “His friends used to run away, because they heard that the mother herself was taking these drugs the whole family is also taking these drugs—the friends didn’t want to come near him. But nowadays he is free with his friends at school.”

“I teach that it is very important to take the drugs because when you are taking the drugs, there is nothing wrong,” Sholdon says. “You will live a normal life, you will be healthy.”

Sholdon plans to become a mechanic after he finishes school.

“Before we got information from Mbuya Daisy, there was discrimination. We had stigma, in fact,” says Sholdon’s father Gilbert, 56. “But after having all the information, our minds were opened.”

Today, Gilbert is the most enthusiastic member of the Mbuya Daisy adults group, sitting proudly with his wife and their two HIV-free babies. Gilbert serves as a volunteer psychosocial counselor in the community.

“I am very happy. I want this program to continue, because we have been able to go in the community and teach other women, other friends who have been living with the virus to come to the facility and join Mbuya Daisy,” Gertrude says. “It has really helped them to disclose their status to their children. This program should continue so it can help other souls in the community.”

Photos by Heather Mason, EGPAF

Antenatal Care Keeps Ugandan Women and Their Babies Alive

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At Kikyenkye Health Centre III near Ibanda, Uganda, I met 26-year-old Janipher Kyarimpa. We sat inside the maternity room, the walls lined with multiple posters about the benefits of antenatal care on one side and the significance of testing for HIV on another.

As she spoke, there was a sadness in her voice. I discovered that eight years previous, Kyarimpa had a miscarriage after she was given herbs by women known locally as “doctors”— traditional birth attendants.

One year ago, traditional birth attendants (TBAs) tried to make her deliver by having her drink two liters of cooking oil.

“Of course, the baby didn’t come out. Instead, I had diarrhea and became more sick. They didn’t understand that the body has its own contractions to push the baby out,” Kyarimpa explained.

Watching Kyarimpa now with her 1-year-old daughter, Kate, she holds her like she never wants to let her go.

Kyarimpa is expecting her sixth child. This is her fourth antenatal care (ANC) visit.

I had gone to Ibanda to document the success of the USAID-funded Regional Health Integration to Enhance Services in South West Uganda (RHITES). The program, implemented by the Elizabeth Glaser Pediatric Aids Foundation (EGPAF), through the Ministry of Health, is empowering women to seek antenatal care with the aim of ending maternal and neonatal deaths.

According to the Ministry of Health, in 2014, the maternal death rate stood at 356 mothers per 100,000 births.

Inside the maternity room, I sat on a chair, a respectful distance away from Kyarimpa and Agnes Tumuhairwe, the nurse in-charge of Kikyenkye HCIII maternity unit.

I ask why they think more women do not attend antenatal care.

Kyarimpa thinks for second, then says: “In the past, I wrongly feared that when I come to the facility, I would be forced to deliver by C-section.”

Tumuhairwe adds that some of the women also think that since they delivered their first and second babies successfully with the help of TBAs, there is no need to deliver the rest in the hospitals.

Yet failing to attend antenatal care and delivering outside the hospital can be very dangerous. When a traditional birth attendant helped Kyarimpa deliver, she almost bled to death, and an infection almost claimed the life of the baby.

USAID–RHITES, has brought a silver lining on the cloud. Women are organizing themselves into groups to learn more about the benefits of attending antenatal care and delivering in a hospital or other well-equipped health facility.

Women are no longer dying due to childbirth.

The program is also enhancing integrated health service delivery in southwestern Uganda. HIV services have been integrated with tuberculosis prevention, care and treatment; safe & voluntary male circumcision; maternal, neonatal care and child health; family planning; nutrition counselling; malaria treatment; and primary care services.

The aim of the program, implemented by EGPAF, is to increase the availability, accessibility, and quality of health services to deliver quality results and improved health outcomes.

The program comes with comprehensive health education both at the facility and at the weekly community outreaches, conducted by the facility’s health workers and Village Health Teams (VHTs).

The teams work with expectant mothers, young girls hoping to be mothers, and the community at-large about the benefits of attending ANC and importance of delivering at the facilities. Couples are also encouraged to jointly take an HIV test to protect themselves and their unborn babies against HIV.

“My husband and I both tested HIV-negative. This baby will be our last born, we have agreed to take family planning because it is hard to feed all the children and pay school fees,” Kyarimpa says to me as my visit comes to an end.

Kyarimpa is married to 30-year-old, Charles Asiimwe.

Asiimwe agrees: “We want to stay in good health to look after our children. Too many children are weighing down the health of my wife and also increasing the cost of treatment.”


Better Care for Tiny Infants

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Elise Ngabouloup, the head nurse of the neonatal unit at the Chantal Biya Foundation Mother and Child Center in Youndé, Cameroon, has a close relationship with her patients. Many of the infants arrive weighing two pounds or less and remain with her for as long as two months as they grow healthy. Mothers stay with their babies for this entire period, sleeping in a dormitory integrated into the unit. This hospital is a godsend for low-income families in this sprawling capital city. From incubators to a fully equipped lab, the hospital provides high-quality care for free. Yet, Elise used to feel frustrated that she could not do more to provide HIV services to her patients.

Two years ago, HIV testing, counseling, and treatment at the Mother and Child Health Center was entirely administered by doctors, who were overwhelmed by the volume of patients. With only two physicians on duty at any time, patients and nurses would often wait hours for a physician. If an expectant mother arrived for an antenatal visit, she might leave without getting tested for HIV rather than wait for a doctor.

Today, mothers at the Mother and Child Center receive prompt and professional HIV counseling, diagnosis, and treatment from nurses who have been trained by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). Through Project DELTA (Delivering Technical Assistance), EGPAF has greatly improved capacity by establishing pediatric training centers in key locations, including within this hospital. A primary focus of trainings is task shifting—delegating responsibilities to primary care staff, such as nurses.

EGPAF trainers provide mentoring and guidance on a day-to-day basis and lead training workshops here for health workers from around the region.

In addition, EGPAF has outfitted a multimedia center and established Internet access throughout the hospital so that all health workers can independently access and annotate medical records—keeping them up-to-date and decreasing the load on clerical staff.

Elise says that the training has transformed her work, drawing her closer to the families that she cares for. Her ability to provide counseling and treatment improves her interaction with parents, who are already understandably anxious. In a typical month, as many as 50 infants may be placed in the neonatal unit, and nearly half of those mothers had not been tested for HIV prior to giving birth.

In her trainings, Elise learned about the World Health Organization’s recommendation to “test and treat” every pregnant woman or new mother and place her on antiretroviral treatment for life if she tests positive. Elise is empowered to immediately begin antiretroviral treatment for any infant born to a mother who is HIV-positive, adding the proper daily dosage to the feeding tube. The amount of medication is determined by the weight of the child.

I used to wait for the doctor to come and sensitize the parents before the testing is done. Now I can do it. Whenever I come across a positive case, I can immediately put the mother and child on treatment.

Elise always includes mothers in the administration of antiretroviral medicine to their babies to reinforce the pattern of continuing treatment at home once the family has left the unit. She feels great satisfaction when mothers like Annie Djanjoe are able to return home with healthy babies.

“Training has not only increased the knowledge of nurses and doctors,” says Elise, “It has improved the quality of care. I am very grateful for the work that EGPAF has done in this hospital.”

 

Project DELTA (Delivering Technical Assistance) is funded by the U.S. Centers for Disease Control and Prevention (CDC) through the U.S. President’s Emergency Fund for AIDS Relief (PEPFAR).





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