The Foundation hosted a luncheon on Tuesday with the Inter-Parliamentary Union, inviting Members of Parliament from all over the globe to discuss the elimination of pediatric AIDS.
MPs from countries as diverse as Japan and Saudi Arabia, to high HIV burden countries like Mozambique and Zimbabwe, joined us for a lively discussion about elimination as well as what they are doing in their own countries to work on HIV/AIDS issues through the parliament.
Japanese MP Ryuuhei Kawada
MP from Japan Ryuuhei Kawada shared his incredibly personal story of living with HIV, the stigma he has faced because of it, and the motivation it gives him to work on these issues.
Additionally, Lediana Mafuru Mng’ong’o, an MP from Tanzania, spoke passionately about the Tanzanian Parliamentary AIDS Coalition (TAPAC).
She explained how it started small with only two members, but has grown to a powerhouse coalition that members are clamoring to join. TAPAC has helped to gain political will for HIV/AIDS issues in Tanzania over the past 10 years, which has led to a permanent parliamentary committee on HIV/AIDS.
The Foundation looks forward to continuing work with MPs from all over the globe, as well as members of Congress in the U.S., toward the elimination of pediatric AIDS.
For years, children living with HIV/AIDS were left out in the cold by conventional treatment methods. But as treatment methods improve, more and more children are growing up with HIV, and they face unique challenges and obstacles. On Monday, the Elizabeth Glaser Pediatric AIDS Foundation hosted a panel discussion of adolescent HIV treatment needs, entitled ” Addressing the Psychosocial Needs of Transitioning Adolescents Living with HIV Since Birth: A Global Perspective.”
Foundation CEO and President Chip Lyons opened the panel. He thanked the Foundation Ambassadors, who he called heroes “by virtue of their fortitude and strength,” and commended Cristina for her efforts to put together the panel. He talked about how vitally important these discussions are. “We’re missing data on young people with HIV,” he said. “It’s difficult to provide the tools that caregivers require.” He added that though there are funding concerns, “a question mark is not a stop sign.”
Jamie Gentille spoke first, and told her story of being infected with HIV during a blood transfusion in 1982. She talked about how after she was diagnosed with HIV at age 8 – a virtual death sentence at the time – her family spoiled her with vacations and gifts to make the time she had left as much fun as possible. But after the National Institutes of Health (NIH) approved a drug protocol for children living with HIV in the late 1980s, Jamie said that “the window of hope got a little bit bigger.” Today, she is 32 years old, and she said, “my sights are set for 80.” Jamie talked about how the needs of youth living with HIV are fairly unexplored. “20 to 30 years ago, we would have never thought about growing old with HIV.”
Princess Nuru Nabbumba Kisitu spoke next. She talked about how she was the last to know her HIV status, and nearly died in 2006. But when she first tested positive, she laughed at the counselor who gave her the news – “How can you say I have HIV?!” She said that when she tested positive a second time, she was “shattered” by the news. The psychosocial support she received in Uganda was very important to Princess – it was key to her dealing with the fear and tension she felt about her HIV status, and the side effects of her medication. Princess also discussed the role of stigma and the challenges of disclosure, and shared a story of being shamed at a clinic and told that if she returned to the clinic pregnant, she would be cut off from her medication and left to die.
The issues of stigma and the fears of disclosure were a major subject of discussion for the panelists. Melissa Sharer discussed how both perinatally- and behaviorally-infected young people are forced to battle not only HIV, but also the stigma and shame surrounding the disease. Many are also coping with grief – the loss of parents or caregivers from AIDS – and they need providers with the training necessary to work with their needs. Rena Greifinger continued the discussion, asking the audience to “think about your own adolescence” and add to those challenges those involved in living with HIV – medications, losing loved ones, isolation and depression, fears of disclosure, possible weak links to effective care and support, and the pain of stigma that can arise from schools, religious organizations, and even clinics designed for treating people living with HIV. Rena said that young people living with HIV need “holistic, intentional, and sustainable” psychosocial support. “We need to treat adolescents as the experts that they are,” she said.
When it comes to discussing sexual and reproductive health, all of the panelists reported that youth living with HIV have the same needs and preferences as other young people. Joanna Busza provided research from Tanzania – where youth make up 20% of those living with HIV – that showed a major disconnect between what young people living with HIV report that they need from their treatment and what they actually receive. Reluctance to discuss sexuality, family prohibitions on disclosure. and unclear expectations are putting young people at risk, she said. Alden Nouga responded to Joanna’s research, and added that Pathfinder’s 1,500 healthcare providers in Tanzania are receiving new training to help them meet the needs of youth living with HIV more effectively. And Dr. Susan Kassede provided much-needed data on the numbers of youth living with HIV – in 2010, 2.2 million adolescents ages 10-19 were living with HIV, and 65% of those youth were girls. She added that program officers, policy makers, and advocates must work together seamlessly to fill gaps and meet the needs of youth, including diagnosis, ART initiation and support, and disclosure support.
Thanks to everyone who participated in this important discussion. Working together, we can meet the needs of youth living with HIV and make growing old with HIV a probability, not a possibility.
On Sunday, EGPAF, mothers2mothers (M2M) and Johnson & Johnson (J&J) hosted a satellite entitled “Eliminating pediatric AIDS and keeping mothers alive from an implementation perspective – best practices, programmatic barriers and bottlenecks in the field.” This was a four-part/panel series of presentations moderated by John Donnelly, a journalist from GlobalPost.
EGPAF Swaziland’s Caspian Chouraya
The first part had to do with country-level approaches around building capacity of HIV service implementers, which highlighted Kenya’s mentor mothers approach (where HIV-positive mothers are trained to coordinate access to and retention in care among other HIV-positive mothers), EGPAF-Zimbabwe’s experiences in reducing costs of all-level health care worker training by reduction in time of training and facilitators (saving $185.00 per participant), and SAATHI’s experience in engaging the private sector to increase local PMTCT capacity (including collaboration of 17 NGOs to increase private site coverage, which has reached 1.2 million women with PMTCT care).
The second panel focused on supporting continuity of care and featured m2m’s work on mother mentors in retaining women through use of smartphones and SMS reminders, and NASCOPs implementation of a courier system to shorten turnaround time for early infant diagnosis of HIV.
The next panel was centered around how to create demand to increase uptake of PMTCT. Examples included the use of m2m mentor mothers, who increase quality of care to clients by relieving health worker burden/task shifting, EGPAF-Zambia’s integration of syphilis and HIV testing (through innovations in rapid testing) and the use of 8 steps to roll out effective integration, and EGPAF-Lesotho’s implementation of integrated health services and the use of Family Health Days, or mobile health services which offer a variety of testing and treatment options for HIV, opportunistic infections.
EGPAF Zambia’s Susan Strasser
The final panel focused on data use and highlighted m2m’s “let’s SOAR” initiative, which included a quarterly data review component, where site coordinators could review daily recorded data and assess areas for needed improvement, EGPAF-Swaziland’s data collection and review mentorship activities, EGPAF-Rwanda’s implementation of an excel macro tools to issue feedback to supported facilities through reports of facility and district data (from which facilities could see where improvements were needed), and EGPAF-Tanzania’s experience implementing quality improvement initiatives to strengthen pediatric care.
Delegates brought interesting questions into the discussion. One of which was how can we better prioritize the “keeping their mothers alive” portion of the global plan. It’s an important point for upcoming work on elimination of MTCT.
Join EGPAF, mothers2mothers, Johnson & Johnson, and our other partners at this upcoming session on overcoming implementation barriers to the Global Plan.
This fast-paced session – moderated by Global Post’s John Donnelly – will feature people working on the front lines of program implementation from high-burden countries and representing various implementing organizations. Each presenter will raise a specific challenge, explain how it was addressed, describe the result, and share what is being done next.
The audience will have the opportunity to interact with presenters for further discussion of implementation barriers and solutions.
“Eliminating Pediatric AIDS and Keeping Mothers Alive from an Implementation Perspective – Best Practices, Programmatic Barriers, and Bottlenecks in the Field” Sunday, July 22, 1:30 – 3:30 PM Mini Room 1
In recent years, before International AIDS Society (IAS) conferences even begin, there are two events that place a special focus on the effects of HIV/AIDS on children:
The symposium, Children and HIV: Closing the Gap – Ending Vertical Transmission through Community Action, opened today at the Georgetown University Conference Center, with a keynote address from U.S. Congresswoman Barbara Lee. The symposium brings together service providers, donors, researchers, advocates, and policy leaders – all to share data and discuss best pratices for children and families.
EGPAF, a member of CCABA, is presenting throughout the symposium, including talks by staff from the U.S., Switzerland, Tanzania, and Zimbabwe. EGPAF topics on preventing mother-to-child transmission of HIV (PMTCT) include:
Country-level efforts to scale up and integrate community support with medical services
Improving the continuum of care by promoting male involvement
Mobilizing community engagement through capacity building of media practitioners
Strengthening district capacity for rapid PMTCT scale up in Zimbabwe using the District Focal Person Approach
EGPAF also has a strong presence at the 4th Annual International Workshop on HIV Pediatrics. The abstract-driven workshop shares the latest scientific data and discusses how to implement advances in PMTCT and pediatric treatment in the field.
Both the symposium and the workshop conclude on Sat, July 21, but will help drive the discussion of HIV and children and families throughout AIDS 2012.
For years, children living with HIV/AIDS were left out in the cold by conventional treatment methods. But as treatment methods improve, more and more children are growing up with HIV, and they face unique challenges and obstacles. On Monday, the Elizabeth Glaser Pediatric AIDS Foundation hosted a panel discussion of adolescent HIV treatment needs, entitled ” Addressing the Psychosocial Needs of Transitioning Adolescents Living with HIV Since Birth: A Global Perspective.”
-driven workshop shares the latest scientific data and discusses how to implement advances in PMTCT and pediatric treatment in the field.
