For HIV-positive individuals, morning coffee comes with a daily drug cocktail. Some take a combination of tenofovir, emtricitabine, and efavirenz; others may have to find substitutes or switch to second-line treatment. The exact combination depends not only on an individual’s T-cell count but also on the drugs’ affordability. Through the state-supported AIDS Drug Assistance Program (ADAP), which provides free prescriptions and case managers for individuals without health insurance, top-of-the-line treatment—often reaching a thousand dollars per year—is no longer out of reach. But full access to ADAP, crucial to HIV-positive individuals’ health, is now under threat in Rhode Island.
In January, Governor Donald Carcieri announced a $375,000 reduction in Rhode Island’s HIV/AIDS–related spending, part of a slew of measures to reduce the state’s $220 million budget deficit. The Carcieri administration believes this cutback will have the least possible impact on the local HIV/AIDS community. Speaking to the Associated Press, Rhode Island Health Department spokeswoman Annemarie Beardsworth insisted that limited funding would merely “mean that people will have to wait a little bit longer” for support and treatment.
Hidden beneath this spin is a far more complex situation. “This is a really big hit for us,” says Stephen Hourahan, executive director of AIDS Project Rhode Island. According to him, the cuts will have a direct impact on HIV/AIDS services provided through local nonprofits such as AIDS Care Ocean State and his own organization. In particular, Hourahan foresees a massive downsizing of the personalized case management services within ADAP, which link hundreds of local HIV-positive individuals with primary care doctors and prescription drug regimens.
With over 100 new HIV infections in Rhode Island each year, Hourahan expects that the long waiting lists for these personalized services will only keep growing. In the meantime, HIV-positive individuals who would otherwise rely on case management services—especially free pharmaceuticals—will instead be forced to seek out more expensive emergency care in hospitals. The Department of Health currently records about 30 AIDS-related deaths each year in Rhode Island; Carcieri’s cut could result in a dramatic increase of this number.
In light of the recession, the possibility of renewed funding for Rhode Island’s HIV/AIDS programs is dim. Even with President Obama’s $2.2 billion extension of the Ryan White Title II program, which regulates the federal government’s annual distribution of money to community-based HIV/AIDS organizations and ADAP services, the percentage of government funding for domestic programs relative to global programs has seen a decline over the past decade. Adding to the problem, Hourahan suggests, is a considerable drop in fundraising for HIV/AIDS. “AIDS has gone off the radar screen,” Hourahan says, “and people think it’s a treatable disease.”
This is not the first time that Rhode Island’s HIV/AIDS resources have been in jeopardy. Four years ago, as Rhode Island policymakers prepared the 2007 budget, the state discovered it had overspent its budget for HIV/AIDS initiatives by over $3 million; after examining total expenses for the 2008 fiscal year, the Department of Health found another $4 million budget shortfall for HIV/AIDS programs. The solution at the time, almost without precedent, was a quick cash infusion from the state. With leftover funds from the Tobacco Master Settlement Agreement—the result of the monumental 1998 court, which funneled billions of tobacco industry dollars into state health resource coffers—the crisis was resolved.
Today, the funding situation is more dire. Through the Ryan White program, states are required to allocate significant funds in exchange for a partial rebate; when states like Rhode Island do not provide enough money, nonprofits immediately lose federal funding for ADAP services. Without these nutritional supplements and personal counseling programs, HIV-positive individuals will undoubtedly grow sicker and require thousands of dollars worth of intensive care later. “We’re all concerned,” Paul Fitzgerald, president of AIDS Care Ocean State, said. “If we lose that matching money [from the federal government], it will be like a deck of cards falling apart. It will cost us millions more down the road.”
Throughout the US, states are struggling to make up for lost Ryan White money. In some states—South Carolina, for example—ADAP funding has been completely cut out of the state’s budget despite a rising HIV infection rate. While thousands of Rhode Islanders currently receive some service through Ryan White–supported initiatives, the large cut in ADAP funding will undoubtedly force Rhode Island nonprofits to fire some case managers and place new clients on wait lists.
According to Fitzgerald, this funding crisis should be solved in sufficient time, albeit through drawn-out negotiations and compromises involving diverse funding sources. As it turns out, Governor Carcieri forced the passage of a Global Medicaid Waiver in January 2009, restricting a federal expansion of Medicaid funds to Rhode Island in exchange for increased state regulation over these funds. Though this strategy was roundly criticized by the Rhode Island Poverty Institute for placing long-term constraints on the amount of federal cash for local health assistance, it has also enabled the Rhode Island Health Department to independently decide the allocation of its federal funding.
It is unclear just how flexible the Health Department will be with these funds, but recent negotiations between the Health Department and local HIV/AIDS nonprofits have proven fruitful, according to Fitzgerald. In the most likely outcome, some health care costs formerly provided by the state (under the label of CNOM, or Costs Not Otherwise Matchable) will be replaced by federal funding sources, a shift that will fill in at least some of the missing hundreds of thousands of dollars for HIV/AIDS funding. Though negotiations have not yet been finalized—the deadline for an agreement is the beginning of the fiscal year in June—a positive, if temporary, agreement should be reached.
Still, the success of these negotiations in terms of the future of local HIV/AIDS funding is uncertain. If in recent crises the state has been able to reach into emergency funding sources, Hourahan and Fitzgerald suggest the recession will leave no further pockets of money within the state’s budget.
Both insist that the Rhode Island HIV/AIDS community remains strong and prepared to tackle any potential funding crisis. Speaking of the most recent negotiations over the state budget, Fitzgerald said, “The HIV community has had a very aggressive role in figuring out what is going on. Without our community’s advocacy, we would not be sitting at the table.” Currently, AIDS Project Rhode Island and AIDS Care Ocean State work together to lobby members of the State House and Rhode Island Finance Committee for increased funds.
And yet the struggle against HIV/AIDS will continue, both in Rhode Island and across the nation. With HIV-positive individuals currently expecting longer lives due to advances in pharmaceutical research, the strain on federal and state funding for HIV/AIDS care programs will only increase. Here in Rhode Island, as Hourahan noted, “The reality is that new people are infected every day. Programs and services are just as important as they were twenty-five years ago,” at the start of the epidemic. Without increased leadership on both the national and state levels, small funding gaps will merely be the beginning of the problem.
Patrick Martin-Tuite B’10 is inspired to act.