HIV can affect you physically and mentally—and also financially.
Without health insurance, medical care and treatment for HIV are prohibitively expensive. Plus, some HIV-positive people are too sick to work, making it extremely difficult for them to pay rent and utility bills and put food on the table. Fortunately, there are various private and public programs in place to help you secure access to the care, treatment and services you need. Some of these programs are open to undocumented immigrants, without the risk of deportation or jeopardizing a residency or citizenship request already under way.
Many clinics and AIDS service organizations have experts on staff—social workers and case managers—who specialize in getting people living with HIV matched up with benefit programs to help defray, if not cover entirely, the costs of medical care, treatment and supportive services. To cover the cost of your health care, options include private medical insurance, Veterans’ medical insurance, Medicaid, Medicare, the AIDS Drug Assistance Program (ADAP)—even pharmaceutical companies themselves. For financial assistance, there are public and private benefits available to those who are disabled, perhaps due to an AIDS diagnosis or a serious treatment side effect. There are also programs to help with rent, food, child care and transportation.
Many of these programs didn’t just appear out of thin air, especially in the early days of the epidemic when there wasn’t a lot of compassion for people living with HIV/AIDS. Since those early years, AIDS activists have advocated loudly and fiercely for access to the best health care and services possible for all HIV-positive people, regardless of their ability to pay. Especially in 2009, when we will have a new administration in the White House, it is important for all of us to continue fighting for our right to care, treatment and services as people living with HIV.
As long as I am alive I will do what I can to educate, advocate and
speak out about HIV. I have dedicated my life to this and have become
stronger, healthier and happier for it. —Bernadette Berzoza Diagnosed 1989
WE'VE GOT YOUR COVERED Navigating the murky waters of private health insurance and programs like Medicaid and Medicare requires persistence and patience. And according to Ken Fornataro, executive director of New York City’s AIDS Treatment Data Network, it is a task that should always be undertaken with professional help.
Even if your situation seems simple, Fornataro recommends talking to an experienced case manager—at a local ASO, for example—so that you don’t take actions you’ll later regret or miss out on benefits to which you are entitled. Even people with private health insurance can often benefit from seeing a case manager.
There are programs in each state that offer health care for people living with HIV who can’t otherwise afford it. State ADAPs cover the cost of ARVs and other medicines for people with no insurance—including undocumented HIV-positive immigrants. However, income requirements and the number of drugs covered vary from state to state. In fact, Fornataro says, “Don’t even think about moving until you’ve talked this out thoroughly with a case manager.”
Another source of coverage for HIV meds are Patient Assistance Programs (PAPs) run by pharmaceutical companies. Some drug companies even offer help with prescription co-payments!
ACTING UP FOR TREATMENT ACCESS Activism is more than marches and stopping traffic. In fact, some of the best ways to change policies and laws are letter writing, phone calls and lobbying of elected officials. Lobbying by people with HIV often plays a significant role in how much money ADAPs and other AIDS programs receive at budget time. One group to check out is the AIDS Treatment Activists Coalition (ATAC): atac-usa.org.