Women With AIDS In NYC: Killing Them Softly

Why, after a decade of decreasing deaths, has New York's progress in reducing women's mortality stumbled so badly? Following the money gives a dismaying answer: the Bloomberg administration.
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World AIDS Day looms. Let's ask a few festering questions about the city where 10% of American women with AIDS live. Why, after a decade of steadily decreasing deaths, has New York City's progress in reducing women's AIDS mortality stumbled so badly? Why after years in which women's and men's deaths were falling at almost the same rate, are deaths of men with AIDS now falling at almost twice the rate of women's; and why, when only a few years ago, deaths of women with AIDS in the Bronx were dropping almost the fastest of any group in the city, have women in the Bronx and Brooklyn, the two boroughs with 60% of New York City women's AIDS cases, especially seen their progress in survival collapse?

Things like this rarely happen by accident -- and, as is often the case -- following the money gives a dismaying answer. Between 2006 and 2007, the Bloomberg administration "redistributed" the federal emergency AIDS money (commonly known as Ryan White funds) which pays for the "enhanced" AIDS medical care and support services used by some 40,000 people with AIDS in the city. To deliver these services, it had inherited an amazing network of programs -- painfully built over many years -- which reached into stricken communities across the city, making AIDS care notably accessible to the poor, distressed and "outer" borough populations who had become the majority of the city's AIDS population.

Yet, when the "redistribution" presided over by then Health Commissioner Thomas Frieden was complete, the Department of Health and Mental Hygiene had contracted 60% of Ryan White funds to Manhattan-based hospitals and agencies. Manhattan only had 30% of the city's actual HIV/AIDS cases (and an even lower percentage of the high need AIDS patients for whom these funds are intended), but it enjoyed other attributes. Manhattan is power central for the city's medical and social service industries, as well as its major AIDS organizations and the only borough with a substantial white and middle-class AIDS population -- mainly gay men. Organizations in the Bronx and Brooklyn, the two boroughs with the poorest, most minority AIDS populations, and with the majority of women's cases, were left with only 30% of the money combined; literally dozens of AIDS programs in these boroughs were closed.

Almost immediately deaths of people with AIDS in New York City shifted. In the two years before this redistribution, deaths for people with AIDS in all boroughs decreased at virtually the same rate -- between 15% and 16%; but in the two years after the city launched its redistribution, Manhattan forged ahead to see deaths decrease by 20% -- for the best record in the city -- leaving the Bronx and Brooklyn to stumble and fall behind to 9% decreases.

The fact that a Department of Health would preside over a redistribution of federal AIDS funds that created differential death rates -- and did so by wrecking major progress in overcoming deaths in the city's poorest areas -- was appalling enough; even more appalling is the fact that the federal government, itself, allocates Ryan White funds to AIDS-impacted cities and states largely based on their caseload. The national formula that sees money follow cases means New York City automatically gets the most funding in the nation -- some $110 million, year after year; illness in the Bronx and Brooklyn, in sum, "produced" most of these millions, but the benefits were shifted to Manhattan, with its powerful medical and social service industries and large AIDS organizations.

And, making the "redistribution" unspeakable was how it injured women with AIDS. These women are 94% black and Hispanic -- and perhaps the most defenseless population within the care of the New York City Department of Health.

Most women with AIDS, as a major report of Women's HIV Collaborative of New York underscores, have "histories of intimate partner and family violence...rates of homelessness and mental health problems run high." Nonetheless, when the city's AIDS funding and programs had reflected "the unique geographic distribution of women and girls living with HIV/AIDS," these women made notable progress in survival.

For example, in the two years before the "redistribution" started, deaths of women with AIDS in the Bronx dropped by an impressive 20% -- an achievement many would have said was not possible for women in the poorest urban Congressional district of the United States. As I know, because my organization, Health People, then ran the Bronx's Ryan White-funded Family AIDS program -- and other key women's support services -- a major reason for this drop was that local organizations developed large numbers of well-trained volunteers. Many of these volunteers were, themselves, women with AIDS -- and they had a real mission to see that other women got proper care and survived. Moving the money to Manhattan meant not only an end to Bronx and Brooklyn "programs"; it also meant severing all that extra community help and outreach -- as the health powers who did the severing knew only too well.

Indeed, the injury to women was so unspeakable that the New York City Department of Health, by withholding documents that are mandated to be public under both federal regulations and its own internal rules and contracts, tried to assure no one could speak about it at all. The Department of Health's contract with an organization called Public Health Solutions ( formerly known as Medical Health and Research Associates) which "administers" federal Ryan White funds and programs for the city, requires it to annually produce "a report for public distribution, summarizing services ...clients served (and) the types of services provided."

Although Public Health Solutions receives $4.5 million a year to administer these funds, it stopped releasing the required public reports in 2005 -- the year before the "redistribution" started! It could hardly have evaded this contractual obligation -- the report is supposed to provide key data for the ongoing planning of effective AIDS services -- without the approval of the Health Department.

Only in October, 2009, finally forced by one a half years of Freedom of Information Law requests and appeals, did the city direct Public Health Solutions to release the 2006 AIDS services report. While 2007 and 2008 data are still missing, and 2006 only provides information about the impact of the first stage of the Bloomberg Administration's "redistribution" even this scratchy information suggests an ominous future for women.

In just that first stage, new AIDS clients from the Bronx and Brooklyn and new women clients overall being enrolled in any Ryan White funded services fell significantly -- by at least 10% -- even as their portion of the city caseload steadily increased. The drop in new enrollments unquestionably means that every year, more people with AIDS in the Bronx and Brooklyn -- and especially more women -- are being doomed to die early; as is well known, when people with HIV/AIDS don't have early, sustained treatment, they lose their best chance for prolonged life.

The disparities -- and disruption -- in services to women are truly staggering. For one example, although the Bronx has the highest percentage of women with HIV/AIDS (40% of all cases) of any borough, no Bronx organization received Ryan White funding to provide a Family Support Program. These programs are largely directed toward stabilizing the care of women with AIDS who are raising children -- nearly all single, minority women. But, Manhattan, with only 6,000 women living with HIV/AIDS compared to the Bronx's 9,000, received funding for four Family Support Programs. The city claimed the Manhattan programs would somehow fill this black hole for sick Bronx mothers but, as anyone could have predicted, it turned out that sick mothers wouldn't -- or couldn't -- travel to Manhattan for help; the numbers of Bronx mothers with AIDS receiving this critical support to manage their families, along with their illness, plunged by 71% in one year; similarly, with almost 75% of Treatment Adherence Support services now placed in Manhattan -- these programs teach people to understand and follow the often complex regimens that AIDS treatment involves -- the number of Bronx and Brooklyn clients dropped by half, and the numbers of women plunged to the point that women were barely 25% of clients receiving this vital education.

The results are written in women's death rates. In the Bronx, where, as noted, in the two years before "redistribution," deaths of women with AIDS had decreased by 20%, progress stalled to the point that they only decreased by only 6.5% in the two years after. In Brooklyn, by 2007 (the last full year for which city AIDS death data is available) deaths of women with AIDS were actually increasing -- the first time any major borough had recorded an increase in women's AIDS deaths in years.

The city continues to withhold -- or, more precisely, hide -- Ryan White services information for 2007 and 2008; however, since we do know that the "final" funding redistribution in 2007 saw several million more dollars in Ryan White services shifted to Manhattan and these "shifts" remain in place -- we can project that women's prospects have steadily worsened.

Taking away the money and services that belonged to women with AIDS was all the easier because they are powerless. The "social service" industry centered in Manhattan, although it promotes itself as a "protector" of the poor, hardly protested shifts that benefited its coffers any more than influential Manhattan AIDS organizations protested. Council Speaker Christine Quinn's Chelsea district also benefited. The misallocation of millions of federal dollars meant to help poor, sick women might ordinarily be seen as a prime subject for City Council hearings, but all efforts to hold hearings in the City Council, protector of "the people," were quashed.

On World AIDS Day, we're supposed to remember. In the city where 10% of women with AIDS in America live, let's remember this -- equal life is deliberately denied to them.

This is the first of a series on AIDS in New York City which will examine funding, death patterns, political influences, the city's extensive cover-up of its action, as documented in FOIL materials, and the reliability of city AIDS data and statistics. A detailed report, "Follow the Money: AIDS Funding and AIDS deaths in the Bloomberg Years," is available on www.healthpeople.org.

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