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HIV safety net in jeopardy

Management gaffes and rising costs imperil support services for Rhode Island’s federally funded program
By BETH SCHWARTZAPFEL  |  May 11, 2006


The 4000 Rhode Islanders living with HIV were on the mind of Dr. David Gifford when he went to Governor Donald L. Carcieri, and then the House Finance Committee, in late 2005 and early this year, with hat in hand. The state’s Ryan White Title II program — the largest funding source for HIV services in Rhode Island — had somehow overspent its 2006 budget by more than 100 percent, or $3.3 million, and Gifford, the director of the state Department of Health, was seeking a quick cash infusion to fill the gap. What’s more, the program was projected to be $4.2 million short for 2007, and Gifford asked that this additional amount be included in the budget.

Although the Health Department director’s requests were granted, the money is, at best, a temporary fix. As of now, it is not yet clear how — or if — Rhode Island will continue after fiscal 2007 to fund the programs that provide lifesaving help to people with HIV.

Title II is one section of the $2 billion Ryan White CARE Act, which, since 1991 has provided state-based funding for HIV medical care, support services, research, and infrastructure. The act has many sections, or titles, but Title II represents the bulk of HIV money in Rhode Island — about $3 million a year. Title II funds the state’s AIDS Drug Assistance Program, or ADAP. Often called the “payer of last resort,” ADAP covers HIV medications for those with inadequate or no health insurance, those who are not eligible for health insurance, and those who lack the means to pay for medications out of pocket. Title II also provides funding for Rhode Island’s public HIV clinics, such as the Miriam Hospital Immunology Center, and related service organizations, such as AIDS Project Rhode Island and AIDS Care Ocean State. Some 1600 Rhode Islanders receive support services through Title II, and almost 600 are on ADAP.

One such individual is Jared Smith of Pawtucket (a pseudonym is being used, because he asked not to be identified), who daily takes five medications that combine to keep his HIV under control.

He was diagnosed in 1984, before HIV medications were conceived, so even though he feels well and keeps busy, serving on the board of AIDS Project Rhode Island and producing a public access cable program, his immune system is badly damaged. Smith nursed his two best friends as they died painful, plodding deaths from HIV, one after another, in the early 1990s. So each morning after breakfast, when he takes his handful of pills from a plastic pillbox on his kitchen counter, he counts himself lucky, even though he suffers from an opportunistic infection, known as PML, which causes memory and speech problems. Smith is lucky that he has lived long enough to see the advent of effective combination therapy, and he is lucky that there are systems to help him pay for the meds.

The medications are financially out of reach for Smith, who receives a monthly $1000 disability check, most of which goes for rent, food, and utilities. Although his disability entitles him to Medicare, it did not include a prescription drug benefit until recently. So if it weren’t for the federally funded AIDS Drug Assistance Program, “I would have to come off my meds,” he says, “and I would get sick, and I would die.”

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