“PEPFAR has kept me alive”

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Florence Ngobeni with RJ Simmonds, Vice President of Program Innovation and Policy at EGPAF.

Florence Ngobeni didn’t know she was infected with HIV until September of 1996 when her newborn child Nomthunzi became ill and was taken to the doctor and diagnosed with HIV infection.  Ngobeni subsequently tested positive as well.  She had watched her husband die three months earlier of an undiagnosed illness – most likely HIV – and Ngobeni could do nothing but watch as her daughter faded away as well. Antiretroviral therapy wasn’t available for children in South Africa at the time. Ngobeni joined a support group while her daughter’s illness progressed. They basically said both of them would die and offered her only their sympathy, she said.  Nomthunzi passed away in February of 1997.

Ngobeni is now an HIV educator and ambassador for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). She discussed her struggles with an audience of Congressional staffers at a briefing hosted by EGPAF in commemoration of World AIDS Day earlier this month. She said she wouldn’t have survived if it weren’t for the life-saving antiretroviral therapy she received, thanks to funding from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). Her viral load is undetectable now, and she has given birth to two healthy children, both born free of HIV thanks to prevention-of-mother-to-child-transmission (PMTCT) services.

Although there has been much progress in the battle against HIV/AIDS, there’s much work to be done, Ngobeni said.  In 2009 there were 370,000 new HIV infections among children and 260,000 deaths among children globally.  Only fifty-three percent of pregnant women living with HIV are receiving PMTCT services, leaving hundreds of thousands of pregnant women at risk for transmitting the virus to their newborns.

Although ninety percent of HIV infections and AIDS deaths occur in sub-Saharan Africa, Ngobeni explained that HIV/AIDS is not only an African problem.  “What happens in another country doesn’t stay there,” she said.  She then asked the audience to imagine if she had traveled to Washington D.C. while being infected with tuberculosis. “If I came to address this audience with TB, I’d leave this audience with TB,” she said.

Expressing concern about possible PEPFAR funding cuts due to budget constraints, Ngobeni said PEPFAR has built a foundation for health care services in places where there had never been access before.  PEPFAR dollars have built new facilities and labs, and trained personnel. And the chronic health conditions she experiences because of her HIV infection, such as thyroid disease and diabetes, would go untreated without the broader health care foundations established by PEPFAR.

When asked about the consequences of cuts in PEPFAR funding, Ngobeni said “We’ll go back to zero if the funding is gone.”  She explained that all the advances made against the pandemic over the past decade would be forfeited, and all of the funds invested already would go to waste.  Tough decisions have to be made in battle, she said, but as we are currently winning the fight against HIV/AIDS, now is not the time to back down.

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