Heroes of the Evolution
Forbes.com | July 23, 2012
mothers2mothers' Maya Kulycky and Mitch Besser wrote this piece on PEPFAR and the legacy left by Elizabeth Glaser.
As I prepare to moderate a panel at the 19th International AIDS Conference in Washington this week, I’m thinking about HIV-positive women like Lucy Wambura and Elizabeth Glaser. Lucy is still with us; Elizabeth isn’t. As the 25,000 delegates, scientists, policy makers, donors and others like Lucy attend from around the world, I think about the evolution that has occurred in the last 30 years.
Rage in the face of no response has been replaced by a revolution and evolution in thinking, action and outcomes. In 2011, the United Nations launched a global plan towards the elimination of new HIV infections among children by 2015 and keeping their mothers alive. [http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2011/20110609_JC2137_Global-Plan-elimination-HIv-Children_en.pdf].
To help us at mothers2mothers contribute to this goal, the Skoll Foundation and Johnson & Johnson just made generous awards to support our Mentor Mothers program, a successful way to make this goal a reality by employing and training mothers living with HIV to guide and support other HIV-positive women as they navigate pregnancy, child birth and rearing — and to take the anti-retroviral (ARV) drugs they need to stop the cycle.
The good news is that while 34 million people live with HIV and 16 million need lifelong treatment with ARVs, 8 million people are getting these drugs – more than ever in history. Since our early dark days, this represents a remarkable enlightenment in policy and practice.
Allow me to introduce you to Lucy, Elizabeth and the Presidents Emergency Plan for AIDS Relief (PEPFAR)—the symbols of this evolution of people, programs and money.
Lucy, 35, has humble Kenyan roots. Married at 19 to an Army man, she discovered her HIV ten years ago, when he tested positive. He died of AIDS two years later, in an era when treatment wasn’t available. She turned to prayer and preachers for healing. When these failed, she wanted to commit suicide. Many family and friends turned away. Some, as she told me, “Started counting to the end of this time when she’ll be dead.” However, her mother, sisters, and two (HIV-negative) sons stood with her, giving her strength and purpose.
She joined the National Empowerment Network of People Living with HIV/AIDS in Kenya (NEPHAK), advocating for human rights and access to care. She is now a program manager, supervising 15 staff, and has spoken around the world, including in Geneva at the 2012 World Health Assembly, encouraging ministers of health to commit to fighting HIV/AIDS. She envisions a world where women with HIV will live without stigma, and with a supportive partner.
Elizabeth acquired HIV from a blood transfusion in 1981. The wife of actor and director Paul Michael Glaser, Elizabeth had just given birth to her daughter, Ariel. Like so many mothers around the world where HIV is endemic, Elizabeth infected her daughter with HIV through breastfeeding. Elizabeth fought for Ariel’s life and then her own, losing both. But in the battle, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) was born.
Launched by Elizabeth and two friends around a kitchen table in 1988, EGPAF now has more than 1,000 employees, a budget of $150 million and supports more than 5,400 sites in Africa and India. Its programs have reached more than 14 million women with services to prevent the transmission of HIV to their babies, tested more than 12 million women for HIV, enrolled more than 1.6 million into HIV care, and started more than 850,000 on ARV treatment.
The organization is redoubling its efforts to engage U.S. Congress, advocating for more support for HIV-related services. It’s a member of the Global Plan’s Global Steering Group and UNICEF/World Health Organization-sponsored task teams dedicated to eliminating HIV. In the countries where it works, EGPAF helps local governments develop service delivery capacity, contributes to national working groups and technical support teams. It guides these countries to implement the services once in place by international non-governmental organizations.
Lucy and EGFAF envision a world without new HIV infections in children by 2015. They know this will only be possible with immense effort backed by continued funding. EGFAF’s leaders say Elizabeth remains “part of who we are and why we come to work every day.” Her messages and photographs are on the office walls, where you can almost hear the echoes: “I need help for my kids.”
Politics aside, President George W. Bush may have advanced efforts to combat HIV/AIDS more than any politician, ever. His five-year PEPFAR program, launched in 2003, then refunded in 2008, infused respectively $15 billion and $45 billion into the fight. PEPFAR and the multilateral Global Fund — the other major donor supporting country efforts to fight the epidemic — have left a tremendous legacy. We have increased capacity to diagnose HIV infections and treat those who have them, to prevent new infections, and to support governments in building stronger health systems and integrate HIV/AIDS services into all health care.
PEPFAR paid for Lucy’s medicines and the programs that deliver them and supported EGFAF’s work around the world. (http://www.youtube.com/watch?v=gNt-q9_36fg)
Under the joint leadership of PEPFAR’s Ambassador Eric Goosby and UNAIDS’ Michel Sidibe, the Global Plan’s promise to eliminate HIV among children may be kept. But the immense efforts of the U.S. government, United Nations agencies, global donors, scientists, service providers and activists will be for naught if the money ceases to flow.
President Barack Obama continues to press a resistant Congress to allocate funds. The Global Fund was unable to raise sufficient funds to offer a round of new funding this year. Some say the new condition we’re fighting is HIV/AIDS fatigue. Americans should be proud of their contribution to this HIV evolution. They should be proud of the leadership that first funded PEPFAR and now continues to manage it. Americans should encourage their representatives to not withhold support. They must be aware that as close as we are to achieving our objectives, pulling back now results in terrible losses against terrific gains.
The heroes of the evolution are people, like Lucy and so many others who have dedicated their lives to this cause. The heroes are the programs, from big ones like EGPAF to small ones such as a few people in a rural African community helping their neighbors. The heroes are those that make it possible with funds, such as PEPFAR, foundations, generous individuals and the countries contributing to the Global Fund.
It has been a revolution that led to an evolution. This week at the International AIDS Conference, we will remember and mourn. We will celebrate and aspire to do more. Above all, we will dedicate ourselves to a future when none of this will be necessary.