MAXWELL:  The people AIDS hurts most often

6/30/1996 – Printed in the PERSPECTIVE section of the St Petersburg Times Newspaper

 

When 8-month-old Timmy died of AIDS in May, people who commented publicly called his death an unforgivable tragedy because it was the direct result of his parents’ behavior. He contracted the disease from his mother who, through unprotected intercourse, contracted it from her boyfriend, Timmy’s father.

Most Americans sympathize and support treatment and prevention programs when learning that children like Timmy (not his real name) have contracted acquired immune deficiency syndrome. But many of these same Americans turn their backs on adults with AIDS or human immunodeficiency virus, which causes AIDS.

National polls confirm that most Americans express little, if any, sympathy for the infected gay male or the intravenous drug user.

One expert familiar with public sentiment and political reactions to people with AIDS is Dr. Kathleen Farrell, a clinical psychologist and the executive director of the AIDS Community Project of Tampa Bay (formerly the AIDS Coalition of Pinellas). In 13 years, Farrell has attended more than 100 memorial services and funerals for people who have died of AIDS. Of these many ceremonies, only three were for children.

Although Timmy’s plight is the more tragic because his life never blossomed, Mick’s plight, related below, is just as tragic. But Timmy’s story and those of other children with AIDS get most of the attention, and programs that help these children get the lion’s share of funding at all levels.

Mick was 28 when he died, a week after Timmy’s burial. He is typical of the people whose funerals Farrell attends.

Mick (not his real name) grew up in a middle-class family in a St. Louis suburb. His parents worked to put him and his two sisters through college. While in college, Mick realized that he was gay. After a dating spree that included two intimate encounters, Mick met Alan.

They moved to St. Petersburg and found jobs, Mick becoming the assistant manager of a restaurant chain. Soon, however, he discovered that he tired easily. After he started having night sweats, he and Alan were tested. Mick learned that he was HIV positive. But Alan was not and moved out.

Mick struggled to stay employed, but his illness and the bills soon overwhelmed him. Then, diagnosed with cytomegalovirus retinitis, Mick was going blind. Frightened and alone, he telephoned his parents, telling them that he was gay and that he had AIDS. His father ordered him never to call home again.

Abandoned and out of work, Mick turned to the AIDS Community Project for help. By then, though, his spirit had been broken, and his rapidly declining health had turned him into a frail old man barely able to walk or lift a fork. And he was nearly blind.

Because of a misguided federal prevention campaign initiated in the late 1980s to convince the nation that AIDS is “everyone’s disease” and because AIDS groups use images of infected children to raise money and to get legislation passed, the Micks of the nation have become victims of political correctness, apathetic journalism, economic greed and academic and medical research one-upmanship.

Here are some important truths about AIDS in the Tampa Bay area. Since 1983, officials have reported 76 cases of children under the age of 12 with the disease. Of these children, 37 have died. During this same period, 5,386 adults have been diagnosed with full-blown AIDS, and 3,127 have died.

Of the 5,386 adults diagnosed with the virus in Tampa Bay, 3,242 are gay or bisexual men. This figure reflects a central insight of this column: America fails to recognize and assist those most at risk of contracting AIDS _ gay men and intravenous drug users and their sex partners.

Instead, officials everywhere allocate wasteful sums to groups such as college women and married couples at low risk of contracting the virus.

The slack must be taken up by organizations such as ACP, which serves nearly 800 clients. It receives relatively few public or private dollars and, operating on about $35,000 a month, it always spends more than it takes in. Broadly, Farrell said, ACP survives by the sweat of volunteers, 26 hard-working staff members, savvy leadership and tight budgeting.

It was established in 1987, as a private, non-profit organization for gays and received its money from gay bar fund-raisers. Today, ACP is a full-service agency and runs a pediatric center called Autumn’s House. The bulk of its money comes from the federal department of Housing and Urban Development, Pinellas County Community Development, VISTA, the American Association of Retired Persons and the Ryan White Title I program.

Amazingly, ACP saves Florida taxpayers tens of thousands of dollars each year. Its backbone, a Medicaid waiver program, lets ACP care for AIDS patients in their homes for $2,432 a month, a figure that excludes hospitalization, physician’s fees and prescriptions. If the same individual were hospitalized and then placed in a nursing home, the monthly cost would mushroom to about $200,000.

The average time of a Medicaid waiver for an individual is 22 months, for a total cost of $55,504. ACP enables clients to stay on their jobs and to keep up their insurance, thus keeping them from becoming total burdens on society. Although the city of Clearwater donates an office building, ACP is too broke to hook up the hot water or the water fountains, open the men’s restroom or lay clean carpet.

Like other agencies serving gay clients, ACP needs more local citizens to donate money, legislators courageous enough to allocate adequate funds, medical experts able to curb their egos and research firms that care more about people than about the bottom line.

Gay men and drug users can decrease their risk of contracting AIDS by avoiding high-risk behavior. But more money for education and prevention is needed to this purpose. Studies consistently show that investing in programs for high-risk groups significantly lowers the number of new infections and slows the spread of the virus.

Ultimately, we need a major shift in our thinking about AIDS. We must confront the facts and act on them. We also need a new awareness that all of us _ including those in the high-risk groups _ are worthy human beings who deserve help. Otherwise, the epidemic will continue its relentless march.