The Bay Area Reporter - July 16, 1999
Cynthia Laird

Leone read a seven-page statement to his fellow councilmembers outlining his extreme frustration, and ended by asking the council û which will finalize CARE fund prioritization in six weeks û to remove 80 percent of the funding for case management and for peer advocacy from all agency contracts. He urged that the money be put instead into a single agency request for proposal, requiring that all agencies coordinate through this system.

"Case management is a boondoggle," he told the council.

After Leone spoke, the council was speechless and members tried to grasp how the HIV health service delivery system in San Francisco could seemingly fail a gay man with AIDS. Leone has been on the planning council for two years; additionally he is an expert parliamentarian who provides services for the city's HIV Prevention Planning Council (HPPC) and is an active member of the Alice B. Toklas Lesbian and Gay Democratic Club. He is a resident at Derek Silva, a HIV/AIDS housing program operated by Catholic Charities.

'Someone's being insensitive'

It was his experience visiting San Francisco General Hospital (SFGH) in late January that was most extraordinary. Leone said he had to go to the hospital's urgent care unit for a prescription of Tincture of opium to help control his chronic diarrhea. "Upon arrival I had the urgent need to use a bathroom," he recounted. "The nurse refused to tell me where the bathroom was because she said they might need a specimen and I should wait. Of course, I was incontinent. When I asked for a clean diaper so I could ride the bus home without sitting in shit, I was told they don't have anything and could not help me.

"I was given a folded up piece of blue plastic. I had no way to secure it in place. Before I could even get out the hospital door, it had slipped and slid down my right leg. I was painted with stool from my anus to my ankle," Leone told the council.

"I just can't understand why this was necessary."

Gloria Rodriguez, public information spokeswoman at SFGH, told the Bay Area Reporter that she will look into what happened to Leone and said it's not hospital policy to refuse basic items like diapers. "If an individual took that action, it's not the policy of the hospital and someone's being insensitive," Rodriguez said after being told of the incident Tuesday, July 13.

Leone said over the past four years he has lost 200 pounds and has had to live with chronic diarrhea and vomiting. He wanted to share his experiences over the last six months before the council completes its prioritization for the next cycle of Ryan White CARE funds. The city received approximately $34 million in CARE dollars for fiscal year 1998-99; of that, approximately $1.6 million went to the two case management categories Leone discussed. Leone said that input from the council's PWA caucus has previously been ignored and brushed aside by the council during the prioritization process.

"I keep hearing how the face of AIDS has changed. Frankly, I'm tired of hearing how the 'face of AIDS has changed.' In fact deaths from AIDS has declined by about 50 percent annually. Now we seem to want to look only at those 50 percent who are doing well. The ones for whom HAART [highly active antiretroviral therapy] is working, those who are re-entering the job market and in essence getting their lives back. I don't think we've really looked at the other face of AIDS, the 50 percent who are still in pain and dying. The ones for whom drug cocktails are not working. The system is responding very poorly to the needs of the truly sick," Leone said.

Leone said he continued losing weight at the rate of about 15 pounds a month and could not get his doctor to listen to his complaints of pain, anorexia, and vomiting. "Finally, in May as I was near collapse a friend helped me to the hospital. My potassium level was critical and I was very dehydrated and significantly anemic requiring blood transfusions," he said. Leone asked for and was refused a CMV serology test. "They said since I was gay they wouldn't do it. Since most gay men are positive they refused to do the blood test on me."

Home from the hospital

When Leone returned home from the hospital he found "the most insulting letter" he could imagine from Project Open Hand, informing him of the need to recertify his illness every six months because of changing eligibility requirements at the agency. "Until there is a cure for AIDS I will always have it," Leone said. "I will die with it if not from it. I'm exhausted and in so much pain I can't stand it. If anyone needs food and grocery support it is me. Putting any further burden for paperwork and proving that I still have AIDS is unconscionable. I'm just so sick of being in pain. For the first time in my life I truly understand why some people self-euthanize.

"Also waiting at home was three months of dirty laundry. My living room floor was covered with stool and vomit-covered dirty clothes. The sink full of dirty dishes not only smelled but was literally rotting. I had four case managers and no one could help me get my laundry and dishes done. The Derek Silva case manager was only concerned about getting my rent paid. They were all very concerned about filling their units of service. One case manager spent 40 minutes out of the hour she spent with me telling me how she met her lover and what it takes to maintain a successful lesbian love relationship. I doubt this information will ever be of use to me. I sat there in pain during this whole episode.

"Another case manager sat with her nose out my window looking at the mess of dirty laundry and saying, 'I wish there was something I could do,'" Leone said.

Peter Veilleux, program manager at Derek Silva, told the B.A.R. that he couldn't discuss particular resident issues. He did say that case management and clinical hours have been reduced at Derek Silva over the last year at the request of residents and that as a result, case managers have a higher client load. Veilleux also said services are provided by other agencies, but as Leone pointed out, they are not always satisfactory.

Leone's dehydration caused his corneas to dry out almost completely, which left him with severely impaired vision. "Shortly after I was released from the hospital I managed to go to Safeway to get groceries. I stood in the store crying because I could not read the labels on the food," he told the council. "Four case managers and no one could help me get groceries.

"No one seemed to be able to help with the real needs: laundry, groceries, and dishes. The system is failing PLMs [people like me]," he said.
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