10/29/2012 09:05 am ET Updated Dec 29, 2012

Crisis in the Shadows: Severe Federal Funding Cuts Threaten to Undermine Progress in the Care of HIV-Positive Women and Youth

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Brooklyn, NY -- Tameca grieves as she talks about her most recent client, a young high school student and first-time mom, who discovered during a routine prenatal check up that she was HIV positive. Financial struggles and her disturbing discovery affected her ability to seek timely medical care. By the time Tameca made contact with her, it was too late. Her baby, like her, was also born HIV-positive.

In most cases, perinatal transmission of HIV can be prevented by providing anti-retroviral therapy during pregnancy and delivery. But care for people living with HIV is complex and requires management of not only the virus, but also the psychological and social aspects of the person's well-being. The Heath and Education Alternatives for Teens (HEAT) Program does just that by providing comprehensive health and care management services to some of Brooklyn's most vulnerable populations infected with HIV.

Last month, the Health Resources and Services Administration (HRSA) slashed funding for programs working with women and children living with HIV/AIDS in several large cities in the U.S. HEAT, a part of the Family, Adolescent and Children's Experience at SUNY (FACES) network, which serves close to 1200 HIV infected people from mostly African American and Latino communities in the poorest parts of Brooklyn, was one of the many such programs that lost over 57% of its funding overnight, with a 90-day notice. The FACES Network has been the recipient of close to $1.7 million annually, under the HRSA Ryan White CARE Act Part D for over 2 decades, to combat the growing HIV epidemic in Brooklyn disproportionately affecting minority women and youth. Federal officials claimed that the limited funds have instead been allocated to other cities becoming new hotspots in the U.S. HIV epidemic.

Consider some facts: New York ranks highest among the 50 states in the total number of HIV cases reported. A large majority of the cases are in New York City, over a quarter of which are in the Brooklyn borough. Even though the national funding for Ryan White Part D has only decreased by 6%, NYC has seen a drop of 41% of its funding since 2010, with Brooklyn alone taking the brunt of the cuts with an 83% drop in funding. In a disturbing, and potentially catastrophic move this year, HRSA has granted funds to only one grantee, the Kings County Hospital Center, to serve a population of 2.5 million Brooklyn residents. Dr. Jeffrey Birnbaum, Director of the HEAT Program and FACES Network says, "To reduce funding to reach and serve HIV-positive, primarily minority people in Brooklyn from the combined $2 million to $350,000 is woefully inadequate given the fact that Brooklyn is the epicenter of the HIV epidemic in NYC and the nation among women and youth. To remove the FACES network is in effect removing a piece of the working structure, which serves pregnant women and their unborn babies, children <2 years with unknown status, women and youth - both facing increasing rates of new infection."

Upon contacting HRSA officials over concern about patients who have, to this point, been receiving care through the FACES Network, providers were simply asked to transfer their patients to the sole grantee in Brooklyn. Sounds simple enough? Tameca, the dedicated outreach worker for the Network, strongly disagrees, "It is bad that we have to cut staff, but what is harder is that our clients are not getting the services they need, and that is really devastating, especially as this population is so difficult to engage." The key issue to understand here is that this population is indeed hard to engage. Expecting troubled teenagers to suddenly change their care providers whom they have built a lasting relationship with is preposterous. This population is essentially non care-seeking and mistrustful of authority figures, requiring intensive outreach efforts to establish rapport and partnerships. This model of care can by no means be "transferred" or replicated easily. Then, there are additional logistical issues to consider, such as the capacity of the sole grantee to absorb over 1000 additional cases in a brief period of 90 days.

Dr. Birnbaum's chief concern is the loss of engagement with his organization's clients. Youth, many of whom have taken months and even years to develop trusting partnerships will potentially end up fending for themselves. In effect, Dr. Birnbaum and his colleagues fear this divestment could spark the return of high rates of perinatal transmission of HIV to unborn babies as well as a declining health status of New York City's HIV-infected population.

Even as HRSA focuses its effort on emerging areas of infections, disregard for the sustainability of existing programs which have received decades of public funding in the most concentrated regions of HIV prevalence is a waste of tax-payer dollars, a disservice to patients in dire need of support, and a recipe for failure in efforts to contain the spread of HIV/AIDS. As a society, it is the right of engaged citizens and communities to question public officials who execute ill-conceived strategies with such severe public health consequences. For Tameca and the countless other community workers battling on the frontlines of the struggle to end HIV, injustice must not be allowed to fester in the shadows.