The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) is a nonprofit organization dedicated to preventing pediatric HIV infection and eliminating pediatric AIDS through research, advocacy, and prevention, care, and treatment programs. Founded in 1988, EGPAF works in 15 countries around the world.
When doctors informed Lunia Alick that her 15-month-old granddaughter, Mercy, was diagnosed with tuberculosis (TB), she feared that she would lose the child. Lunia could clearly see that the once-bouncing-baby-girl was suffering.
“She became very weak as each day passed. She developed a persistent fever and lost weight,” explains Lunia.
Mercy’s mother had been diagnosed with and treated for TB. Lunia did not suspect TB in her granddaughter because Mercy had been healthy during most of her mother’s illness.
“To tell the truth, I did not think that she had TB. She did not even have a cough,” says Lunia.
But while her mother’s health improved, baby Mercy started getting sick. Her legs swelled, she developed a small rash, and she became listless.
Lunia took the baby to the nearest health facility in the Kaluma area, which is about 15 km from her home village of Kafumbu in Dedza District. There, she received treatment for her symptoms—but after one week, there was no improvement. Lunia and Mercy went back to the same clinic and were referred to Dedza District Hospital, where Mercy’s mother had been admitted and treated for TB.
Health workers conducted a chest X-ray on Mercy, but they could not detect TB. However, a second X-ray test came back positive.
Diagnosing TB is a particular challenge when it comes to children, as it is often missed due to non-specific symptoms and a lack of sensitive and child-friendly diagnostic tests. Health care workers also often lack sufficient knowledge about TB and lack capacity to screen for TB in children and provide prevention services.
In Malawi, TB is the leading cause of death among people living with HIV. According to Malawi incidence data from the World Health Organization (WHO), more than 3,000 new pediatric TB cases are documented in Malawi each year.
To address these critical gaps in prevention and diagnostic services in childhood TB, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) launched the Catalyzing Pediatric Tuberculosis Innovation (CaP TB) Project in 2017. With funding from Unitaid, EGPAF is supporting this innovative program at 40 health facilities in Malawi, including Dedza District Hospital.
The project brings new innovations for routine TB screening in all service delivery points. This includes training cough monitors (staff who observe patients for TB symptoms) and orientating health care workers on pediatric TB management, which focuses on improved clinical diagnosis and chest X-ray interpretations. In addition, CaP TB utilizes Cepheid’s GeneXpert diagnostic instrument to test sputum samples. This equipment is much more sensitive than methods used in the past and more easily detects the presence of TB in children.
“We received pediatric TB trainings and we now have the equipment and capacity to diagnose TB in children,” says Anisen Mphande, a TB officer at Dedza District Hospital. Mphande says that many children under age 10 are screened for TB every day at the hospital and that five children are currently receiving TB treatment. Mercy is one of those children.
“It was more difficult to diagnose [Mercy’s] illness because it is extrapulmonary TB. This means the TB is outside her lungs and attacked her lymph nodes,” says Mphande. “Fortunately, she started improving immediately. We are happy with her progress.”
Mercy is now in her fourth month of treatment, and her health has bounced back. Lunia, who once lost hope, now looks forward to watching her granddaughter grow up.
“EGPAF appreciates the funding from Unitaid to be able to implement this project and support other children in Malawi like Mercy,” says Veena Sampathkumar, EGPAF- Malawi’s country director. “All it takes is political will, commitment, and resources to make sure that we integrate available diagnostics, prevention, and treatment options into the public health system to make a catalytic impact on TB.”
To this end, EGPAF is working hand in hand with the Ministry of Health to successfully implement effective and innovative models of care to improve detection of pediatric TB in Malawi.
“We can reduce and fully fight pediatric TB morbidity and mortality by use of innovations in diagnostics, treatment, and implementation models,” says Malawi Secretary for Health Dan Namaleka, M.D.
“I make friends with everybody, even the police, so that people like me and my friends don’t get hurt,” says Dickens. He is the peer counselor for men who has sex with men (known as MSM), a distinct minority in Uganda, where stigma and homophobic violence often deter sexual minorities from accessing HIV services. According to the latest data, HIV prevalence among men who have sex with men is 13 percent in Uganda.
For years Dickens has brought together young men for HIV services. Now he does so at the Knowledge Room, a bright orange refurbished shipping container situated in the Rubaare Trading Center in southwest Uganda. The Knowledge Room serves members of key populations, including MSMs and sex workers. It is supported by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) through the U.S. Agency for International Development (USAID), RHITES SW project. The room is equipped with a pool table and a television, making it an ideal hang-out spot. It is staffed by health workers and social workers who provide HIV services. The center also provides free condoms, lubricant, and pre-exposure prophylaxis (PrEP).
“The Knowledge Room is a recreational facility that provides health education and information,” says Team Leader Alice Berigija. “For example, young people will come and play games, watch movies—and in between, we start health talks on HIV and AIDS, about who is at risk and how they can receive services, including confidential counseling, testing, and treatment.
“It is a small community, so we are careful about how we handle each individual,” says Berigija. “If a client needs to go to the health center, we make sure they are escorted to reduce waiting times and to counter stigma. Alice emphasizes that the Knowledge Room staff work closely with the local health center to ensure clients are well served. They conduct outreaches together and document and share data.
Dickens likes the Knowledge Room because he can refer young men there, and they don’t have to worry about being discriminated against. They can have fun and learn about how to stay safe. For those who are not able to come to the Knowledge Room, Dickens arms himself with all forms of protection, condoms and PrEP, to distribute in the community.
For far too long, pregnant and breastfeeding women have been overlooked in clinical research. A history of treating these women as “vulnerable” has led to exclusion from studies, creating a major gap in access to safe and effective drug options.
Pregnant and breastfeeding women are often left with unanswered questions about the safety and effectiveness of their medications, and are often forced to make an impossible choice: Do they continue treatment they are not sure is safe, or do they stop treatment to avoid risk – which may end up being more harmful to both themselves and their unborn child?
Over the past two years, the PRGLAC task force held public meetings to discuss challenges and develop recommendations for solving this problem. And because maternal and child health is at the forefront of our mission, the Elizabeth Glaser Pediatric AIDS Foundation tracked this process and provided input to the task force on what should be included in their recommendations. EGPAF cares deeply about this issue given the direct link to HIV – both making sure therapeutics are studied and approved for use in pregnant and breastfeeding women to protect the mother’s health and also to prevent transmission of HIV to their child.
To help draw light to this ongoing challenge and the important work of the PRGLAC task force, EGPAF partnered with Treatment Action Group (TAG), the Society for Maternal-Fetal Medicine (SMFM), and the HIV/AIDS Network Coordination Women’s HIV Research Collaborative (WHRC) to host a two-part webinar series in 2018, highlighting the importance of including pregnant and breastfeeding women in research. Following these webinars, EGPAF worked with partners on a public statement, presenting specific recommendations for the inclusion of pregnant and breastfeeding women in research, with endorsement from more than 30 organizations and individuals. EGPAF presented this comment in writing and in person to the PRGLAC Task Force in May 2018.
In September 2018, after nearly two years of consideration, the PRGLAC Task Force submitted their final recommendations – many of which are in line with the public statement supported by EGPAF – on how to address these gaps and improve research on therapeutics for pregnant and breastfeeding women. In March of this year, the Secretary of Health and Human Services announced his intention to implement the recommendations and extend the Task Force for another two years. This monumental achievement means that protection and care for pregnant and breastfeeding women will remain a global health priority – in fact, the next meeting of the PRGLAC task force is scheduled for this month.
EGPAF is proud to support the work of the PRGLAC Task Force and is encouraged by the actions of the Secretary of HHS to uphold the recommendations. We will continue to push this issue forward and help improve access to safe and effective medicines for moms everywhere.
Felizarda, 33, couldn’t believe her luck when she discovered that she was pregnant with twins. This is the second set of twins for this mother of seven children in southern Mozambique. In fact, Felizarda’s name does mean “lucky” in Portuguese.
But as a woman living with HIV, Felizarda can tell you that it takes more than luck to give birth to and raise healthy children. In Gaza Province, where Felizarda lives, 17 percent of women of child-bearing age are living with HIV. The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) is working with the Mozambique Ministry of Health to make sure that every woman receives individualized antenatal and postnatal care to ensure that mothers and babies are healthy.
“I went to the health facility for antenatal care,” says Felizarda, “and the health workers there put me on a prevention of mother-to-child HIV transmission (PMTCT) drug regimen so that my babies could be born HIV-free.”
The health center also assigned Felizarda a mentor mother, Rosa Mazuy, to help track her health and the health of her children. Mentor mothers are women in the community living with HIV who are trained to provide counseling and other support to HIV-positive women who are pregnant or breastfeeding. On the day that a women enrolls in PMCTC, her mentor mother counsels her about the importance of adhering to medication, sharing her own experience. The mentor mother then accompanies her client home. Thereafter, she conducts regular home visits.
“I am grateful that my mentor mother visits me every month and makes sure that I am taking my medication and that my children are healthy. My seven children are HIV-free thanks to the health services that I receive,” says Felizarda.
“When you hear a first-person experience from a sister who is also living with HIV, it is empowering … because you are together,” says Felizarda. “The best thing about Rosa is that she gives me advice as a woman who knows who I am.
“I felt very good. My children will not be like me, with HIV,” says Felizarda, now holding four-month old Constancia and Francisco. “They will grow and be healthy.”
We are travelling along a dirt-road in Western Kenya when we pull up to a compound with a mud-walled home surrounded by the lush grass. In the yard, a little boy is playing with his mother’s khanga (wrap-around), but he quickly darts into the house when he sees us. A towering man in a black cap steps out of the house to greet us—the little boy peeking out from behind his grandfather’s legs.
This seems like a normal family dynamic—a man providing protection for his grandchild. But there was a time when the child and his mother were not welcome in the household.
When Maurice found out that his 15-year-old daughter, Faith, was pregnant, he chased the girl from home.
“I was very angry,” Maurice says. “I felt betrayed. I could not stand her because she had disappointed me.”
Faith tearfully went to live with her grandmother. Her dream of continuing her education was shattered—as she was now going to be a mother.
In Kenya teen pregnancy is a growing health concern. In Homabay County where Faith resides, 33 percent of girls 15-19 have are pregnant or have had children.
“I did not know much about sex,” Faith says. She had met a university student who lavished her with gifts and money, which were hard to come by in her family. Now she was paying a heavy price.
Fortunately for both Maurice and Faith, two community mentors intervened to help reconcile the family and place Faith back on an academic path.
In 2016, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) launched a community-level, home visiting and mentoring program, known as JUA— a Swahili acronym for “Jielimishe Uzazi na Afya,” which means “educate yourself about reproductive health.” JUA focuses on improving health and social outcomes for pregnant adolescents and their children at high risk of HIV infection.
The then Kenya Education Cabinet Secretary Amina Mohamed ordered her ministry to investigate and file a report of all cases of pregnancies among school girls noting that this report will enable the ministry to outline measures to curb such cases. In addition, secondary school heads have been directed to enhance support services to help young mothers selected to their schools to enroll and focus on learning.
Through JUA, community health volunteers made contact with Maurice. The community health volunteers known as ‘home visiting teams’ comprising of two mentors—one for the the parent/caregiver and one for the the girl.
“It took us a year to convince Maurice to allow Faith to return to school,” says Michael Neng’o, the male facilitator. “He was bitter that his daughter had failed him and nothing at first could convince him to bring her back home or consider taking the girl back to school.”
“I just could not see the point of taking her back to school,” Maurice says. “It was already hard enough raising the money for school fees, and it felt like a waste to go through all that again. I could not understand how Faith would be able to concentrate in school [because she is] now a mother.”
The process was arduous, but the home visiting team pressed on.
“We began with discussions around keeping mother and baby healthy and slowly introduced the topic of having Faith return to school,” Michael says. Finally Maurice agreed to allow Faith back into the household.
“They told me that pregnancy was not a death sentence and that Faith was eager to get a second chance—one she would not squander since she had learned the hard way about life,” Maurice says.
Faith’s EGPAF mentor, Joyce Otieno, visits her every week to see how mother and baby are faring.
“Being children themselves, these young mothers do not know anything about taking care of babies,” says Joyce. “My role is to walk with her in this journey of motherhood as well as offer psychological support since she is dealing with a lot of adult realities at a young age.”
With the baby being taken care of at home by her mother, Faith can focus on her studies. But it is not the same life as for her classmates.
“I have to wake up earlier to make sure my son has food for the day while I am away in school. I also have to return from school early so I can take care of my son and still have time for homework. It is not an easy balance but Madam Joyce encourages me during our sessions,” says Faith.
Maurice keenly follows up on her daughter’s academic progress by visiting the school every week—along with his mentor Michael. The updates from school are always encouraging and although Faith has missed two years of school, she is catching up and is well on her way to achieving her dream of becoming a lawyer.
The challenge of teenage pregnancies and risks for adolescent and young girls to contract HIV remains a big concern in Kenya, but through JUA, a potential solution has been forged to help girls like Faith have a second chance at school and at life. Thus far, JUA has assisted 384 girls—of which 96 girls in Homabay County have been supported with skilled birth delivery and family planning services. JUA has also helped those girls stay in school or gain readmission.
“The day I found out I was pregnant, my world crumbled,” says Faith. “In school, I was teased by my classmates when the pregnancy started to show. I felt ashamed. Some of them told me to abort because I would not be able to return to school after the baby, but I did not want to give up my child.
“I am glad I kept him—he is a blessing to me,” Faith says as she smiles at her son.
JUA is an AIDS Free project funded by the U.S. President’s Emergency Fund for AIDS Relief (PEPFAR) through the U.S. Agency for International Development (USAID).
A similar program helps other teens moms and recently part of a Kenyan news story. You can watch it here:
Homa Bay county ensures teen mothers don't lose out on education || #TeensWithKids - YouTube
An expert panel of global health leaders, composed of Peter Sands, Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria; Dr. Ken Staley, U.S. Global Malaria Coordinator; Amb. Deborah Birx, U.S. Global AIDS Coordinator & U.S. Special Representative for Global Health Diplomacy; and USAID’s Dr. YaDiul Makudi, Medical Officer and Senior Tuberculosis Technical Advisor, Office of Infectious Diseases, discussed the importance of U.S. investments in global health, and how these resources can be effectively leveraged by the Global Fund to Fight AIDS, Tuberculosis, and Malaria to achieve the greatest impact.
While each speaker works on eliminating a specific disease, the conversation centered around the importance of strengthening and integrating the broader health system . Amb. Birx argued that health systems strengthening goes beyond health infrastructure and personnel to really building a relationship with a community. She explained, “We at PEPFAR are unrelenting and unapologetic in our work because we are here to serve.” Dr. Staley agreed, stating that progress against an individual disease can free up capacity for an entire health system. As healthcare workers are able to spend less time treating HIV, TB, or malaria, they can devote more time to vaccination campaigns, prenatal care, or health education.
The Global Fund works with governments, the private sector, civil society, faith-based organizations, and affected populations to end AIDS, tuberculosis and malaria, investing almost $4 billion annually in this fight and saving 27 million lives since its creation in 2002.
The United States has always been the Global Fund’s largest donor, and its investments are leveraged to increase contributions from other donor countries. Said Peter Sands, “American leaders and taxpayers should be very proud.”
While the structure and programming of the Global Fund and U.S. global health agencies differ in many ways, these complementary differences actually allow for a more robust and efficient response to the “three diseases”. For example, while the President’s Malaria Initiative focuses more on directly administering services, such as distributing insecticide-treated nets and malaria treatment, the Global Fund operates indirectly by financing local organizations. This is why a combination of multilateral and bilateral organization support is critical – only by working together will we eliminate these disease.
Increasing resources in the global fight against AIDS, TB, and malaria is the only way to accomplish our shared goal. Dr. Makudi explained that defeating TB – the world’s leading infectious cause of death – requires better diagnostics, better treatment, and better prevention. Sands added every dollar spent needs to be efficiently used for programs, but also needs to be effectively leveraged to increase resources. As he said, “there isn’t just one recipe for how we achieve success.”
While tremendous progress has been made, ending the epidemics will require greater financial investment and continued collaboration. We must work together to end AIDS, TB, and malaria for good.
The good news? You can help!
Click here to urge Congress to protect global health and development funding today.
Carolina is a 25-year-old mother of two living in Chokwe, Mozambique—a farming district located along the Limpopo River. Nearly half of the teenage girls in Mozambique are either pregnant or have already become mothers. This leads to a high dropout rate of girls in school. Fifty-eight percent of Mozambican women are functionally illiterate.
Carolina has had her challenges. Her father died from AIDS-related causes seven years ago, around the time that she had her first child. Then her mother left the community in search of work. When Carolina was pregnant with her second child, three years later, she tested positive for HIV.
As a young woman living with HIV, Carolina is far from alone. Girls and young women account for 74 percent of new HIV infections among adolescents in sub-Saharan Africa.
AIDS-related illness is the most common cause of death among young people ages 10-24 in this region of the world.
Fortunately, Carolina had access to youth-friendly HIV services. She was prescribed lifesaving antiretroviral medication and was enrolled in prevention of mother-to-child HIV services. Carolina’s daughter and son are both HIV-free. Carolina is raising them herself under the roof of her uncle and aunt.
“When I learned about my HIV-positive status, I cried nonstop for several months,” says Carolina. “I stayed indoors because I believed that the community would stigmatize me.”
“Then I started going to an adolescent support group. I started participating in discussions. It was good because I shared my experience with other people and I didn’t feel so alone. I took my antiretroviral medication, and I started getting better and better. From that time, I felt empowered,” says Carolina.
Eighteen months ago, one of Carolina’s friends brought her to a DREAMS “safe space.” DREAMS is an ambitious partnership to reduce HIV infections among adolescent girls and young women in 15 countries, including Mozambique. Sponsored by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), DREAMS aims to help girls develop into Determined, Resilient, Empowered, AIDS-free, Mentored, and Safe women.
In Chockwe, DREAMS is supported by the Centers for Disease Control and Prevention (CDC) and administered by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF).
Chockwe is one of the highest performing DREAMS districts, with a 50 percent decline in new HIV infections among adolescent girls and young women.
DREAMS safe spaces host meetings twice a week for young women 18-25. When they meet, they sing and dance. Then they listen to a talk by a health worker knowledgeable about HIV prevention and sexual health services, and discuss the challenges and triumphs in their lives. They ask health and life questions and share their experiences. Both male and female condoms are freely available for the young women.
The Chokwe DREAMS group has four ambassadors, including Carolina who have been trained to counsel and educate their peers—both during the meetings and in one-on-one sessions. They regularly conduct home visits during the week and even do couples counseling. Some of the girls in the DREAMS group are living with HIV and some are HIV-free. All share a goal to be healthy and independent.
“At the meetings, I saw girls who are vulnerable, who are living with violence,” says Carolina. “I have been supporting and guiding and educating them because I have also faced the same difficult challenges. I suffered a lot. I can be a voice so that they will not feel alone.”
“I like what I do. Girls in this area are vulnerable. Certain girls are making wrong decisions—like having unprotected sex—and I sensitize them. They think that they can’t do anything in their lives. When men come back from the mines during holidays, they can abuse the women—physically, psychologically, and sexually. Sometimes the women don’t trust anyone. I have been trained to counsel them so that they can continue with their educations and succeed.”
From her experience as a DREAMS ambassador, Carolina has learned how she can take steps to better her own life. Although she dropped out of secondary school after grade 9, she is back studying. After she completes 12th grade, she hopes to go to the university and study medicine. Her greatest hope for her daughter and son is that they be educated and independent.
“Being HIV-positive doesn’t mean that you cannot find love,” says Tafadzwa Busuman. Tafadzwa has known about his HIV-positive status since he was a 12-year-old orphan living in Kwekwe, a mining town in central Zimbabwe. Today he is 25 and healthy—and engaged to be married.
Back in 2006, Tafadzwa was short for his age and sickly—as was his sister. Their aunt suspected that their parents had been HIV-positive and took the siblings to be tested for HIV. Brother and sister both tested positive. They were almost certainly infected with the virus during pregnancy or breastfeeding. At that time, HIV testing and treatment were not widely available in Zimbabwe.
Learning about his HIV-positive status was a double relief for Tafadzwa. After a childhood of illness and missed school, he was immediately enrolled on antiretroviral medication—which quickly ended his symptoms and got him back on track academically. In addition, Tafadzwa was connected to other children living with HIV through the Tinevimbo support group, sponsored by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF).
Tinevimbo means “We have hope” in the Shona language.
The Tinevimbo support group gives HIV-positive children and adolescents a safe space for discussing their related issues and concerns with peers, under the watchful eye of a caring health worker. A frequent topic in the group is how to address stigma and discrimination in the community. Stigma can erode the confidence in young people living with HIV and can discourage them from adhering to their medication. It can also hamper their quests for love.
“As we grow up it is something that is normal [to look for a love relationship], says Tafadzwa to a circle of his peers at a Tinevimbo meeting. “There was a time when I was worried, thinking that because of my HIV status I cannot make it in life—like never having a fiancé. But to my surprise, the opposite came true. I decided that I want a partner who is also a member of the Tinevimbo support group … and she’s right here … she’s right here.”
Tafadzwa and Patience. Photo by Eric Bond.
Patience Mushamiri, 21, blushes and stands at Tafadzwa’s urging. “Yes, I am his fiancé,” she says with a wide smile, “We fell in love through our support group.”
“I love his personality,” says Patience about Tafadzwa. “He is one person who understands me. He stands with me always—and I have seen it when I am sick. He is my best friend who I can tell my secrets to. He always encourages me to do what is best for me.”
“Here are some of the reasons that I love Patience,” says Tafadzwa: “She is focused. She comforts me in times of hardship. But what I love most about Patience is that she loves me.”
Like Tafadzwa, Patience once doubted that she could live a full life.
“I was one person who was never happy about my HIV-positive status from the moment that my parents disclosed it to me,” says Patience. “I felt unwelcome in the world. I felt lonely and cut friendships with those who didn’t know my status.
“I defaulted on my medication in 2005, and my auntie brought me [to Tinevimbo], where I was introduced to peers who comforted me and encouraged me on the importance of medication. These peers came to check on me, and they boosted me. I started to feel like I was in another world.
“The group helped me understand that I am not alone. I have friends here who care for each other and for me as well.”
“The group helped me understand that I am not alone. I have friends here who care for each other and for me as well.”
“Tinevimbo gave light to my life and brought the hope that I can be someone in life, and I can achieve what I want, even if I am positive,” adds Tafadzwa.
Along with being members of the same support group, Patience and Tafadzwa are Community Adolescent Treatment Supporters (CATS). CATS are HIV peer counselors who have been trained through Africaid, a community-based partner of EGPAF.
“The main aim of the CATS is to try by all means to empower children living with HIV/AIDS and to follow up on treatment failure [for those HIV-positive children who are not taking their medication]” says Tafadzwa. “And we share ideas on how we can best live positively.”
Patience continues to volunteer as a CATS and hopes to go to college next year. Meanwhile, Tafadzwa is studying nursing and saving up money for Patience’s bride price (a sum that the groom makes to the family of the bride).
“I love kids a lot and will love to have my own,” says Patience. “I am so excited about my wedding.”
“Our wedding is a day that everyone will witness as one of our successes in life,” says Tafadzwa. “With the grace of God, everything is possible.”
If there is a place in American rhetoric for unrestrained ambition, it is the State of the Union address. Seemingly implausible promises made in these speeches, from putting a man on the moon to waging a war on poverty, have become historic realities within a few short years of their announcement.
In 2003, President George W. Bush seized the State of the Union platform to urge Congress to perform a “work of mercy” which would save the lives of more than 17 million people with HIV over the next 15 years: investing $15 billion in a brand new Emergency Plan for AIDS Relief (PEPFAR), and transforming the course of the global epidemic.
President Donald Trump’s announcement in last night’s State of the Union — of a commitment to end HIV transmission in the United States and beyond by 2030 — has reminded the nation that HIV remains a persistent global and domestic threat. Over 1.1 million people in the United States are living with HIV. Nearly 15 percent of them are unaware of their status, only half have achieved viral suppression. And in 2017, nearly 40,000 people in the United States received an HIV diagnosis. In the past, Presidential stake has served to lift the fog of complacency when interest in a public challenge has faced the burdens of fatigue or disillusionment.
Eliminating HIV transmission in the United States will require a tenacious commitment to sound, scientific public policy on domestic AIDS.
But as important as awareness is, eliminating HIV transmission in the United States will require a tenacious commitment to sound, scientific public policy on domestic AIDS, an area in which President Trump’s track record inspires no confidence, and has threated access to critical medications and stigmatized vulnerable populations.
In light of President Trump’s history on HIV, doubts expressed by leading domestic HIV activists and service organizations are well-founded. As the U.S. Department of Health and Human Services (HHS) rolls out details of the plan in the coming days, it should be met with extreme scrutiny and carefully contained hopes.
Dozens of domestic HIV experts are already weighing in on what it will take to make the strategy a success; I urge the President to listen carefully. Eighteen months ago, six members of the President’s Advisory Council on HIV/AIDS (PACHA) resigned in protest over his lack of understanding and concern about the epidemic, citing the President’s failure to meet with advocates as a candidate and his unwillingness to include experts in his health care policy decisions as President. He showed exactly how correct this assessment was when he fired the rest of the Council and left it unstaffed for an entire year, finally relaunching in the last month.
The most effective programs are borne out of meaningful collaboration and a willingness to listen.
Charles Lyons, EGPAF President & CEO
From my perspective as the CEO of an organization that has been fighting HIV for 30 years, it is clear to me that the most effective programs are borne out of meaningful collaboration and a willingness to listen. This was true in the early days of the epidemic, when American activists and people living with HIV demanded that their voices be heard in order to drive research and make treatment available. And it is true today across the globe: as an organization that implements PEPFAR programs across sub-Saharan Africa, we have seen firsthand that only by working with service providers on the ground and the people who will actually benefit from our services will we be able to mount an effective response to the epidemic.
The President should solicit evidence-based contributions from experts in the field and those living with the disease. Only by taking into consideration the many voices and faces that represent HIV in the United States and around the world will any effort have a chance of success.