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On a trip to visit family in South Carolina, Niko Flowers, who lives in Kew Gardens, Queens, asked after a cousin. The cousin recently died of AIDS, her family told her. Flowers was surprised: Nobody had even mentioned that her cousin was infected.
But she understood. "When I got diagnosed," Flowers said, "I didn't tell anybody for four years."
Flowers has been living with AIDS now for 15 years, after contracting it from a boyfriend when she was in college. She is no longer silent about it. She works for Love Heals, which sends people with AIDS to speak out about the disease.
The teenagers to whom she speaks, though, do not always like to talk about it. Neither do most New Yorkers, who may see it as a distant disease, a manageable disease, a gay disease, or an African disease -- as nothing connected to their own lives, or even to their own city.
Last month, the city began to speak about AIDS once again with a sense of urgency, when City Health Commissioner Thomas Frieden announced that a New York man had been infected with what appeared to be a new, drug resistant strain of AIDS.
Even though the scientific merits of the case were immediately brought under question, Frieden's announcement inspired more media attention around AIDS than there had been in years.
The frenzy soon faded; the silence resumed. Many advocates, though, say that the recent discussion was never about the real threats from AIDS. The issues, they say, persist.
HIGH RATE OF INFECTIONS
New York has long been known as the center of the domestic AIDS crisis. The AIDS rate in New York State remains at about double the national rate for men and triple the national rate for women. There are 90,298 city residents known to be living with AIDS, and up to 45,000 more who don’t know that they’re infected. In the quarter century since the AIDS epidemnic began, the city has suffered 16 percent of the national death toll, with over 85,000 AIDS casualties to date. (summary of most recent NYC AIDS statistics in pdf format).
The reasons cited for New York's high AIDS rates include the city's high levels of drug use, a permissive sexual atmosphere and widespread poverty. The combination of these factors is what makes New York’s epidemic distinct.
While the number of new AIDS cases in New York has continued to decline since 1995 -- there were 5,552 cases in 2002 and 4,205 in 2003 -- experts see worrisome signs. Nationwide, the number of new HIV diagnoses has been increasing slightly since 2001, in a reversal of a previous trend, according to the Centers for Disease Control and Prevention. Some see this as evidence of the growing ineffectiveness of safe sex campaigns throughout the nation. And there is plenty of evidence that such campaigns are increasingly ineffective in New York as well. In a 2003 survey (In PDF format) by the Department of Health less than half of gay men said they used a condom the last time they had sex (in pdf format). Condom use among straight men and women was even lower. Experts also point to a rising number of syphilis to show that more New Yorkers are having unsafe sex. It is just a matter of time, some worry, until the number of AIDS cases in New York will start to follow the national upswing.
DIFFERENT POPULATIONS AT RISK
Most new HIV infections in New York City are still contracted by men through sex with other men, but the proportion of new infections being passed through heterosexual sex is rising sharply. In the first quarter of 2004, 22 percent of new diagnoses were among heterosexuals, up from 16 percent a year before. The disease is also becoming an increasing problem among women, according to a recent report by the Department of Health (in pdf format).
Like other issues where economic wellbeing plays a role, minorities suffer disproportionately. Blacks are three times as likely to be HIV positive than whites; Hispanics are twice as likely. People of color are also much less likely to know their status; six of ten black New Yorkers diagnosed with HIV find out their status on the same day they are diagnosed with full-blown AIDS. Once infected, people of color die at higher rates than white New Yorkers do, mainly because they have poorer access to medical care.
NEW CHALLENGES RELATED TO LOWER DEATH RATES
Overall, death rates have been declining drastically since the advent of better drug treatments in the mid-1990s. This success has come with new challenges.
Aside from making it harder to keep AIDS in the public consciousness, lower death rates have meant more people living with AIDS. Some 67 percent of people with AIDS are now over the age of 40; 28 percent over the age of 50. As they age, new problems surface: Most AIDS drugs, for example, have only been tested on younger people; the potential side effects or effectiveness of certain treatments for older people are unknown. (See the article on AIDS Over 50 in the Community Gazettes for Greenwich Village.)
New York’s AIDS housing system is facing an impending crisis, according to a recent report commissioned by the city (in pdf format). As people live longer, healthier lives, they are also more likely to be able to return to work, leaving advocates and the city to design back-to-work programs tailored to the needs of people with AIDS.
NEW YORK CITY PREVENTION EFFORTS
If AIDS has been particularly brutal in New York, it has forced New Yorkers to become especially effective in fighting back.
New York’s efforts on AIDS are largely carried out by a network of community organizations, which city officials cite as a vital part of the response to the disease.
These organizations spend significant energy advocating various approaches that the city government should focus on. The debate, say activists and city officials, helps both sides by disciplining them. Activists praise the Bloomberg administration for engaging in this debate in a way former Mayor Rudolph Giuliani was never willing to.
Mayor Michael Bloomberg’s approach to AIDS centers on encouraging people to know their HIV status by expanding the places where people can get tested and making the testing process quicker and easier.
He also has focused on syringe exchanges. Advocates see this as the Bloomberg administration’s most tangible success on AIDS. Last year, the city opened the first needle exchange in Queens, the last borough without one, and is planning several more. ( See Fighting AIDS With Needle Exchanges" in the Community Gazette for Long Island City)
In the first quarter of 2004 the number of people with injection drug histories who were newly diagnosed dropped to 88 from 156 the year before.
Testing And Information-Gathering In The Face Of Stigma
When New York City Health Commissioner Thomas Frieden announced that a man had become infected with what seemed to be a new strain of AIDS that progressed rapidly and resisted medicine, the scientific community was not immediately convinced that the new case merited all the attention it was receiving. The long-term clinical significance has yet to be determined. Meanwhile, the health department has been accused of being alarmist.
The health department said the possibly new strain of AIDS has made it all the more important that people be tested for HIV, something the agency long had been promoting in any case. While some activists publicly contemplated radical measures, Frieden said he would like to change at least one law to allow better information-gathering on the disease.
The commissioner said that he has no intention of rolling back confidentiality protections, but some say that for some time he has been hinting at doing just that. His past record of encouraging forced hospitalization for tuberculosis patients has led some to question his judgment on the balance between civil rights and aggressive medicine.
Critics say that civil liberties require particular care with regards to AIDS because stigma about the disease still poses an obstacle to prevention efforts. "Frieden comes from a tuberculosis approach,” said Julie Davids of Community HIV/AIDS Mobilization Project. “I don't think his means are going to get the ends that we need.”
Isacc Weisfuse, the department’s deputy commissioner for disease control, says that the department is looking at the success in reducing tuberculosis rates for inspiration in working with AIDS, but he acknowledges that not all techniques will transfer. He bristles at the suggestion that privacy could be compromised.
AIDS And The Public Schools
The school system is seriously lacking in health teachers, and 63 percent of school districts don’t meet state requirements for the number of teachers trained to teach about HIV/AIDS, according to a 2003 report by State Assemblyman Scott Stringer. Many schools, he says, simply avoid talking about AIDS altogether; some bring in outside groups like Love Heals instead of having their own teachers take the responsibility of informing the students.
When public schools do teach about AIDS and other sex education topics, the guide they use describes AIDS as a disease that primarily affects gay men, talks little about how it has affected communities of color, and informs students on the use of birth control methods that were discontinued years ago. Neither the overall health curriculum nor the HIV/AIDS curriculum has been updated since 1991.
After sustained pressure, the Department of Education says that it has drafted replacement curriculums for health and HIV/AIDS. Activists have criticized the HIV/AIDS curriculum for avoiding frank discussions of drug use; the health curriculum, they complain, doesn’t cover sexual orientation. After input from parents and advocates, the health department says the new lessons will be in place by September.
The New York AIDS Coalition is working with the city, but is not convinced their partner is committed. “When it comes to the Department of Education, they have other priorities,” said Kazanas. “If it’s not about reading and writing scores, it’s really not on their radar.”
NEW YORK MONEY: DEFYING THE FEDS
When Bloomberg decided to focus on needle exchanges he was defying the official wishes of the federal government, which has banned the use of federal funds for syringe exchanges since the late 1980s. New York’s ability to run its own program illustrates one of the city’s major strengths: it has its own money.
New York City and New York State are recognized as places that put more taxpayer money towards HIV and AIDS programs than elsewhere. The flexibility afforded by these funds has long allowed New York to innovate with HIV/AIDS policies.
In this year’s proposed budget, Bloomberg has proposed a permanent allocation of $5 million to the Department of Health’s budget for prevention efforts in communities of color. The money itself is not new; the City Council has been putting it aside for several years. But making it permanent will make it easier to plan ongoing programs.
FEDERAL MONEY: CUTS AND STRINGS
As elsewhere in the country, the majority of funding for AIDS prevention and services in New York comes from the federal government.
Funding for those who need expensive treatment is declining on the federal level. President George W. Bush has proposed sharp cuts for Medicaid, and the Ryan White CARE Act, two of the major ways in which people with AIDS get medical treatment. There is also less money for federally funded AIDS housing.
New York is at the center of efforts to develop an AIDS vaccine. Researchers at the Aaron Diamond Research Center began enrolling New Yorkers in the first critical trial of a new AIDS vaccine, called ADMVA. The federal government funds virus research at Columbia University and the New York Blood Center. And the blood center is the Manhattan trial site for a vaccine effort by Merck Pharmaceuticals. Likening such efforts to the long quest for a polio vaccine, experts caution that similar efforts to stops AIDS will require money and commitment.
But after a large increase in the 1990s, the federal AIDS research budget (which is now about three billion dollars a year) has leveled off, according to Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, which supports and conducts AIDS research.
For those working on prevention, not only is funding being cut, but the type of work that is being funded is also being redefined.
In 2003, the Centers for Disease Control, frustrated with the nation’s lack of success in HIV prevention, developed a new strategy that put an increasing focus on preventing new infections by identifying people who are already infected and working with them to cut down on interactions through which they might infect others. It insisted that those organizations that receive funding for prevention do the same.
The agency describes its decision as a way to bring discipline to AIDS prevention. But private AIDS organizations, many relying solely on federal grants to stay in existence, say they are seriously burdened by the new approach.
"Because certain people pull the purse strings, one feels that one doesn't have a choice but to go along with the way they do things,” said Tokes Osubu, executive director of Harlem-based Gay Men of African Descent, which has seen its budget cut by about 80 percent.
Activists regularly complain that groups working primarily with gay men have the most trouble getting funding. Because the current administration has been encouraging abstinence-only sex education, those teaching about safe sex often feel left out.
Aside from hampering the actions of specific organizations, many feel that the federal government’s controlling approach has taken away one of the best ways to keep AIDS prevention effective: allow those working among particular communities to adjust to the specific needs of each community.
By adopting a nationwide standard, says Kazanas, the federal government is ignoring the complexity of an epidemic that is different in every place it is present.
“We have a better grasp and a better handle on the needs of our particular epidemic than somebody sitting in Washington.”
FOR MORE INFORMATION
New York City Department of Health and Mental Hygiene
New York State Department of Health
New York AIDS Coalition
Gay Men’s Health Crisis
Harm Reduction Coalition
Coalition Searchable Database of AIDS information
Directory of New York Department of Health Studies on AIDS
Henry J. Kaiser Foundation Introduction to HIV/AIDS in New York State