The New York Times - Sunday, January 25, 2004
Kate Stone Lombardi

AIDS is a disease that still makes headlines. AIDS in China. AIDS in prisons. AIDS ravaging African countries. But AIDS in Westchester County? Most residents worry more about threats like whooping cough, flu or West Nile.

Yet AIDS is Westchester's most challenging health crisis, according to Dr. Joshua Lipsman, the county health commissioner. Roughly 2,000 people in the county are living with AIDS, and an estimated 3,000 are infected with H.I.V. Excluding New York City, Westchester has more people living with AIDS and H.I.V. than does any other county in New York State, Dr. Lipsman said.

While AIDS deaths have declined, the number of people becoming infected with H.I.V. in the county has remained constant. That means that there are more people alive with H.I.V. and AIDS than ever before. And while it's certainly good news that new medications have allowed people infected with H.I.V. to live longer, that progress also presents a public health challenge. The more infected people there are, the greater the opportunity for transmission of the virus. And in Westchester, the number of new infections in women, attributable to heterosexual transmission, is growing quickly, just as it is in the rest of the world.

So why has the disease fallen off the radar screen of public attention here? AIDS activists say that there are several reasons. First, the advent of new medications to treat H.I.V., the human immunodeficiency virus that causes AIDS, has largely been misinterpreted as a cure for AIDS. Advocates also believe that a certain amount of fatigue has set in around the subject of the disease. Most troubling, Dr. Lipsman said, is the feeling that little public attention is being paid to AIDS in Westchester these days because it is primarily affecting African-Americans, and to a lesser extent, Latinos.

"I think negligence of AIDS is a form of racism," Dr. Lipsman said. "There is no other disease that is so disproportionately impacting people of color as this one is.

"If you look at the most likely person in Westchester to be getting an H.I.V. infection, she is going to be a heterosexual African-American woman between the ages of 30 and 50 and living in one of Westchester's cities," he said. "There are very few other medical problems in which we can identify so clearly the targeted population. If this were happening to heterosexual white women between the ages of 30 and 50, there would be a story on it every day." Indeed, in Westchester, African-Americans make up 14.2 percent of the county's total population, but account for 51 percent of residents living with AIDS, Dr. Lipsman said. He said that 75 percent of AIDS cases in Westchester were among people of color, meaning both African-Americans and Latinos. Of those cases, roughly two-thirds are among African-Americans. Latinos make up 15.6 percent of the population and make up 19 percent of AIDS cases.

Data on H.I.V. infections, which have been kept by the Centers for Disease Control and Prevention in Atlanta since June 2000, reveal that the disproportionate impact of the disease on minority populations is growing. In the last 18 months, 56 percent of new H.I.V. infections in Westchester are among African-Americans, and 22 percent are among Latinos.

The epidemic is also showing a shift in gender. Currently, 28 percent of AIDS cases in Westchester are among women. According to county Health Department figures, of the new H.I.V. cases -- 153 diagnosed in Westchester in 2001 -- 66 are women and 87 are men, meaning 43.1 percent are among women. The rate of H.I.V. infection attributable to heterosexual contact is climbing.

Long identified as a disease primarily striking gay men, AIDS is having less of an impact among that group in Westchester; only 18 percent of AIDS cases from 1997 to 2001 in the county were attributed to men having sex with other men.

Linda Beal, 43, of Yonkers, fits securely into the demographic of those currently most likely to become infected with H.I.V. She believes she caught the virus from her husband, who was injecting drugs. She tested positive for H.I.V. in 1995, and is living with AIDS. Her road has not been an easy one. By her own admission, she first reacted to her diagnosis by using drugs herself.

"I couldn't cope with the fact that he gave it to me," she said, "and that was just my way of running and running and running."

The mother of three children, she eventually signed herself into a long-term treatment program. She said that she has been clean of drugs for four years, but that while she was coping with her addiction, the virus began to take its toll. Ms. Beal talks about viral loads and T-cell counts with weary expertise. Her state of health is a roller coaster. In 2002 she felt well enough to volunteer at AIDS Related Community Service, a social service agency dedicated to H.I.V. and AIDS based in Hawthorne, where she worked in the food pantry and sorted donated clothing. She joined a mothers' support group, which she found so helpful that she attended the meetings even when a bout with pneumonia forced her to travel with an oxygen tank. But many of the steps she has taken to improve her life have been waylaid by her illness.

"Everything I get involved in, I have to pull out of because of my health," Ms. Beal said. "I've tried school, I was doing a job treatment program, but when I'm not feeling well enough to go, someone else can use my space. It gets depressing."

While the discovery of new medications has meant that an H.I.V. diagnosis is no longer necessarily a death sentence, advocates say that there remains a widespread misconception among the public that the drugs are a cure for AIDS, or that living with the disease is just not that big a deal.

"Because there's a viable treatment that's keeping a lot of people alive and healthy, people think that, 'Gee, this isn't so bad; it's treatable. I can live with it,"' said Jeffrey Kraus, executive director of the regional agency AIDS Related Community Service. "That's a dire mistake."

Advocates point to new studies by the Centers for Disease Control and Prevention that show alarming rates of H.I.V. infection among young urban gay men, who were not old enough to witness the devastating impact of the disease among gays in the 1980's. Ms. Beal and others living with H.I.V. and AIDS belie the notion that because treatments are available, getting infected is not so bad.

"It's a big deal, trust me, you don't want to have this," said Laura Esposito, 54, of Yonkers. Ms. Esposito was told she was H.I.V. positive in 1995; she is now living with AIDS. She believes she was infected through unprotected heterosexual sex. It was not until she became extremely ill with pneumonia, and dropped to 98 pounds from 125, that her doctor gave her an AIDS test.

When the diagnosis came, she said, "My whole life turned upside down, and nothing was the same." She lost her job at a pharmacy. Ms. Esposito, a widow whose husband died at the age of 29 from a cerebral brain hemorrhage, said her son "flipped out because he thought I was going to die." Her mother began throwing away the silverware and the dishes Ms. Esposito used. With her paycheck gone, Ms. Esposito eventually lost her home.

None of that is to speak to her health. She began taking protease inhibitors in 1996. But an administrative mistake restricted her Medicaid card, and she couldn't afford her medications, one of which cost $700 a bottle. Although the problem was straightened out in one week, during the lapse in her medication regime, the virus mutated and became immune to the drugs she had been taking. She now has what is called a "wild type virus," she said.

Ms. Esposito takes 12 pills a day, a combination of drugs that fight the virus and all the side effects they cause, including migraines, debilitating diarrhea, severe stomach problems and nerve damage to her legs. She has been hospitalized repeatedly. Coping with her illness consumes her time and energy.

"It's not like any other disease you get," Ms. Esposito said. "If you have diabetes or cancer or M.S., your family is going to jump round you and take care of you. If you get AIDS people are going to shut you out. It's going to be a full-time job just managing it. You have to make sure your food stamps are in place, your Social Security is in order, you have your claim benefits, your medications, and you get to the doctor. You can never forget you're sick."

With more people in the county living longer with H.I.V. and AIDS, case management has become more complicated. Elizabeth Lacy, the director of client services for AIDS Related Community Service, said that roughly nine years ago, case management consisted mostly of estate planning and helping the AIDS patient "die well." Now, she said, case workers deal with a complicated array of medical and social problems, with many AIDS victims suffering from trauma, depression, drug abuse and family issues. AIDS can still be fatal.

"We do a memorial service for our clients, for anyone who has died in the last month, and no month passes where we don't have at least two or three people who die," Ms. Lacy said.

While organizations like Ms. Lacy's offer case management, support groups, counseling and other services for people with H.I.V. and AIDS, there also remains a strong focus on education and outreach, with an eye toward encouraging testing and preventing the disease from spreading further.

"From a public health perspective, the fact that there are more people who are alive today with H.I.V. and AIDS than at any time in history," said Mr. Kraus, of AIDS Related Community Service, "means that there's a greater need for prevention education, because there are a greater number of potential carriers."

He said that compared to the rest of the country, the Hudson Valley Region has nearly one and half times the rate of H.I.V. infections from needle use. Nationwide, 25 percent of confirmed AIDS cases are attributable to injectable drug use; in this region (which includes Westchester, Rockland, Putnam, Orange, Ulster, Sullivan and Dutchess Counties) 38 percent of AIDS cases are from needles. Mr. Kraus attributed the higher rates to the region's proximity to New York City, which has always been known as a center for use and distribution of heroin and other injectable drugs. New York City's rate of AIDS cases attributable to needle use is 40.5 percent, Mr. Kraus said. Because of this, much of the outreach about the disease needs to be among the population that uses drugs, he said.

By far the most effective way to reduce the spread of H.I.V. infection among injection drug users is the use of needle exchange programs, said Dr. Lipsman, the health commissioner. He said that critics of needle exchange programs believe that such programs encourage people to use drugs or give people access to drugs that they would not otherwise have. But studies have consistently shown, he said, that these programs can help sharply reduce new H.I.V. infections. But instituting needle exchange programs in Westchester has proven a political quagmire.

Currently, the Urban League of Westchester has a permit from New York State to run needle exchange programs in Westchester. It operates one in Mount Vernon, which opened in 1995 after the League met with the police commissioner, the mayor, local religious leaders and presented a community forum to find the communitywide support it needed to proceed.

"You'd be surprised at the people who come in to exchange needles," said Larry Hilton, the executive director of AIDS/H.I.V. programs at the Urban League and co-chairman of the Westchester AIDS Council, an advisory group. "They don't come in with their nose running or scratching. It's a different group. We have people who work on Wall Street, people who get needles in chauffeur-driven limousines."

The Urban League has been frustrated, however, in its attempts to expand the program into other cities. With 30 percent of cases, Yonkers has the highest AIDS rate in the county. But efforts to open an exchange program there have "met with a stone wall," Mr. Hilton said. The Urban League runs a van that picks up people in Yonkers and drives them to Mount Vernon to exchange their needles.

"One of the biggest travesties is the lack of the needle exchange program in Yonkers," Dr. Lipsman said. "A needle exchange program in Yonkers, New Rochelle and White Plains would be an enormous contribution to addressing the H.I.V. problem, and the Urban League and the State Health Department would be willing to expand to those communities if they were allowed to do it."

The Westchester AIDS Council is seeking new ways to address prevention in communities being hardest hit by the disease. Mr. Hilton said that one way the council was reaching out to African-Americans was through a faith-based initiative. Some churches, particularly the Grace Baptist Church in Mount Vernon, have been addressing AIDS in their communities, offering support groups and services. But other churches have resisted.

"There's still that stigma about it's being a sin," Mr. Hilton said. He added that religious leaders could be a powerful force in AIDS prevention.

"Every Sunday or Saturday, you have a captive audience of people, and people look up to leadership," Mr. Hilton said. "So if he says, 'Go get tested,' 90 percent of people will go get tested."

Wilfredo Morel, Mr. Hilton's co-chairman on the council, said that if a straightforward program on H.I.V. and AIDS was offered to Latinos, "maybe three people" would attend. But if disease prevention was combined with other concerns important to the community, he added, like legal issues around dealing with immigration or developing one's own business, the message would reach far more people.

"A lot of people don't hear about this disease," Dr. Lipsman said. "They don't realize they are at risk. They don't shoot needles and they are not gay men. A lot of these African-American women and men, and Latino men and women, it doesn't occur to them that it could happen to them."

Taking a Stand Against AIDS Here and Abroad

Former President Bill Clinton has made fighting AIDS a main focus of his work since he left the White House and moved to Chappaqua.

The mission of his foundation, the William J. Clinton Presidential Foundation, based in, Little Rock, Ark., is "to help people in the United States and throughout the world to meet the challenges of global interdependence." Fighting H.I.V. and AIDS is one of five areas of concentration for the foundation. Earlier this month, he announced that his foundation had negotiated deals with five major medical companies to discount significantly two critical diagnostic tests for H.I.V./AIDS in Africa and the Caribbean.

The tests are routinely used in Western countries to determine when to start drug treatment in AIDS patients, and to monitor how well the medications are working.

Three months earlier, Mr. Clinton had announced an agreement his foundation had arranged with generic drug manufacturers to cut prices of AIDS drugs.

The World Health Organization, a United Nations agency, has said that six million of the 40 million people infected with AIDS worldwide were in immediate need of antiretroviral treatment, medications to reduce the amount of H.I.V. in the body, but that only about 480,000 were receiving it.

Mr. Clinton has devoted his efforts to AIDS on the international front, and has been less visible or not visible locally. When asked to comment on AIDS in Westchester, Mr. Clinton said in a statement that a great deal of progress against H.I.V. and AIDS had been made in this country in the last decade, with both rates of infection and rates of mortality declining.

At the same time, he noted, "There are disturbing signs about the spread of H.I.V., especially among women and people of color." "As we do bring more treatment to millions around the world who have none, America must be aggressive in educating, caring and treating people here too," Mr. Clinton said. "And we must do what we can do to reduce the stigma of AIDS so that those who confront its harsh reality need not also confront harsh treatment arising out of ignorance and prejudice." Kate Stone Lombardi

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