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An Unstoppable Force

By Taylor Moore

This morning I had the privilege of joining Foundation Ambassador Florence Ngobeni-Allen at a special breakfast on Capitol Hill. It was hosted by Senators Lindsey Graham and Patrick Leahy, and Congresswomen Kay Granger and Nita Lowey, and included a bipartisan audience of leading U.S. policymakers.

I went in to the event expecting a wonderful morning, with remarks from a roster of champions in the fight against AIDS, including Elton John; Michele Sidibe; the Deputy President of South Africa, Kgalema Motlanthe; John McGrue; Dr. Rick Warren, and others.

But the event became much more.

Foundation Ambassador Florence Ngobeni-Allen addressing the Congressional breakfast.

Senator Leahy opened the breakfast calling for bipartisan support for an AIDS-free generation. He expressed his appreciation to the global audience for efforts to continue momentum in the fight against AIDS, and urged his colleagues to remain committed to the cause.

Other speakers echoed that call for a shared responsibility and commitment. Dr. Rick Warren, co-founder of Saddleback Church, spoke of the faith community’s contributions to the fight against AIDS, and the importance of collaboration among private, public, and faith communities in ongoing work against the disease. “Thank you for caring,” he said. “If we want to end AIDS, I am on your side.”

But it was Sir Elton John who summed up the theme of the morning best, stating that “the power of people working for good is an unstoppable force,” and that together, our sustained support and contributions have and will continue to make a dramatic impact in the fight against AIDS.

Elton John’s personal contributions – more than 25 years as a leader in the AIDS community – are emblematic of the unstoppable force he urged others to join this morning.  Also part of that force is Florence Ngobeni-Allen.

Florence spoke to the audience of losing her daughter Nomthunzi to AIDS more than 15 years ago, and how that painful loss led her to become a counselor in her community. At the time, the medicines to keep an HIV-positive child healthy were unavailable in Florence’s home country of South Africa, and too many mothers had to watch their children die from AIDS.

Florence worked as a counselor for these women because she knew what the desperate fight to save a child from an untreatable disease felt like. Motivated by her love for Nomthunzi, Florence became committed to doing anything possible to help other mothers avoid that loss.

When prevention of mother-to-child transmission of HIV services (PMTCT) came to South Africa 10 years ago, Florence’s world changed. As she said in her remarks, she was soon able to share hope, not grief, with the women in her community, and eventually, her role shifted from counselor to advocate and activist, fighting for access to and education about these lifesaving services.

Later, Florence would join many of these women, experiencing the joy of a healthy child herself through the birth of her two HIV-negative children, Alex and Kulani.

Everyone who heard her knew that when Florence spoke, she wasn’t just sharing her own story. She was representing all women affected by HIV — every mother who had lost a child to AIDS, who had experienced the miracle of PMTCT, who had witnessed the epidemic’s impact firsthand, and who was also part of that unstoppable force in the fight against AIDS.

Florence’s personal message of heartbreak and hope, and the reception she received in that room of peers this morning, reminded me that our fight against AIDS is not only a shared fight, but a winnable one as well.

Florence, Sir Elton John, and the other incredible leaders at this morning’s breakfast are representatives of a much larger community committing to a future free of AIDS. And their message this morning was loud and clear: we must remain committed, we must work together.

If we do, we WILL end AIDS.

Florence Ngobeni-Allen, Dr. Rick Warren, and Michel Sidibe

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Filed under Advocacy, EGPAF, IAC 2012, PMTCT, Public Policy, Public-Private Partnerships, South Africa, Uncategorized

Using Mobile Technologies to Eliminate Pediatric HIV: Evidence the Future is Bright for mHealth

By Michelle Betton

Photo: Dr. Seble Kassaye (Left) and Dr. John Ong’ech (Right)

Mobile health technology (mHealth) is a pretty hefty topic to delve into at 7 a.m., but this morning’s mHealth presentation at IAS – sponsored by the Elizabeth Glaser Pediatric AIDS Foundation, mHealth Alliance, and Johnson & Johnson – provided encouraging insight into how mobile technology can positively affect pediatric HIV work.

Several studies over the past few years have highlighted the impact of mHealth on pediatric HIV, which were cited by William Philbrick, consultant with the mHealth Alliance. Findings showed that when receiving SMS (short message service) messages and reminders, women were more likely to attend antenatal visits – one study showed this increased by as much as 25 percent through the use of mobile phones. Additionally, women were 57 percent more likely to adhere to HIV treatment when receiving SMS reminders and health information. Other areas in which SMS messaging has improved outcomes are exclusive breastfeeding, stigma, and water and sanitation.

EGPAF’s Seble Kassaye described a pilot study in Kenya to address the high prevalence of HIV in Nyanza Province. Kenya was a good test case, as 63 percent of Kenyan households have mobile phones. Mobile phone technology was used to reinforce key messages for women and men around maternal and child health, exclusive breastfeeding, prevention of mother-to-child transmission of HIV, and male involvement. An important point to note about the messages is that they were HIV-neutral; some women and men share mobile phones with others, so neutral messaging was important to protect study participants from stigma. Despite positive feedback from the study such as increases in exclusive breastfeeding among women who received the messages, barriers still hinder the full effectiveness of mHealth, particularly fear of stigma.

Merrick Schaefer of UNICEF illustrated Programme Mwana, a project that has now been scaled up nationally in Malawi and Zambia to decrease turnaround time for clients to receive HIV test results, and to manage health systems in real time. The program consists of two components: Results160, which is focused on health systems and targets clinic staff; and RemindMi, a community-focused application that helps community health workers follow up with and report on client health status through SMS. Results160 allows clinic staff to alert central laboratories through SMS that samples have been sent for testing; in return, laboratories send electronic test results to clinic staff, which are sent to clients (confidentiality is preserved through PINs). RemindMi alerts community health workers to follow up with clients around child births, clinic visits, and adherence to medications.

Overall, the future seems bright for mHealth interventions, although some issues, like stigma, need to be addressed for optimal effectiveness in the long run.

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Filed under Kenya, Malawi, Uncategorized, Zambia

Welcome to EGPAF@AIDS 2012!

By Jane Coaston

This week, the International AIDS Conference makes its return to the United States after a 22-year absence.

From July 22 – 27, the AIDS 2012 Conference will bring about 20,000 researchers, political leaders, activists, people living with HIV, and journalists to Washington, D.C. They’ll be sharing the latest scientific findings, policy initiatives, and programmatic successes – all in efforts to achieve an AIDS-free generation.

With recent advances in treatment and prevention of HIV – and tangible momentum toward ending new HIV infections in children worldwide – it promises to be a historic conference.  

We at the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) plan on having an active presence at AIDS 2012, from hosting satellite sessions, presenting on panel discussions, and participating in the conference’s Global Village.

We’re bringing our message of ending pediatric AIDS to this global stage – and we want to bring you with us.

Here is where you’ll find all of the details about EGPAF’s activities at the conference, including the latest information on children and HIV, and lessons learned from our global HIV prevention and treatment programs.

There will be live updates from sessions and events, resources for media attendees, and our thoughts on what we learn each day of the conference.

We’ll also be featuring links to the best blogs reporting from AIDS 2012, and gathering Tweets from throughout the conference halls.

We’re looking forward to sharing what we learn, and we’re eager to hear what you have to say.

Please comment on our blog posts and our Facebook page, Tweet back to us, and look for us on Instagram.

Whether you’re in D.C. or reading from afar, we look forward to seeing you at AIDS 2012!

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