Low-income people with HIV currently receive care through a patchwork of federal and state programs. If the federal government considers them to be disabled, after a certain amount of time they become eligible for Medicare, which covers most medical costs but not prescription drugs. So they can supplement their Medicare coverage with Medicaid, which does cover prescriptions - at least, until the new Medicare bill goes into effect and that program closes. Low-income people who aren't disabled may be covered by Medicaid, which is funded by federal block grants to the states, depending on the state they live in. Or they may receive free health care from a state or private organization which receives grants directly from the government under the Ryan White CARE Act. Depending on how much grant money their local service provider receives from Ryan White, they may be eligible for medical care plus all kinds of support services - housing subsidies, transportation assistance - or they might be put on a waiting list for anti-retroviral therapy. Regardless of where their primary health care comes from - even if they have private insurance through an employer, if it doesn't cover prescriptions - low-income people with HIV probably get their medications from the government, usually through AIDS Drug Assistance Programs (ADAPs) funded by the federal government but administered through the states. It's not necessarily obvious which programs will cover a particular patient's care, so upon entering treatment patients have to file application after application. In my state, for example, in order to receive medications from ADAP patients first have to apply for, and be rejected by, the state's Pharmacy Assistance program. That application process is required even if it's obvious that the patient will be rejected by PA.
Confused yet? Imagine trying to negotiate this system with the benefit of an eighth grade education, just after you've been told you have an incurable and terminal illness.
As state budgets strain to the breaking point, existing HIV funding programs are drying up. Sixteen states have waiting lists for HIV medicines or have capped enrollment in their ADAP programs. For example, as of April 2004, North Carolina's waiting list has 449 people who have been told that they won't be eligible to receive HIV medicines until someone else in the program dies. (see this PDF fact sheet.) Eleven other states plan to institute cost restrictions to their ADAP programs in the upcoming year. Even Massacusetts is talking about rationing HIV drugs, a sure sign that the system is completely broken.
Back to the Institute of Medicine:
Despite the advent of new and improved AIDS drugs, thousands of people are left with inadequate treatment because government programs are hampered by shortfalls in state budgets and confusing eligibility standards that vary among states, says the report. [...]Providing adequate medical treatment for HIV isn't just an issue of human decency and compassion - it's a public health issue. HIV treatment reduces the likelihood of transmission in two primary ways:
The study's authors argue that a single public financing arrangement -- including uniform eligibility requirements across the country and a federally defined set of services -- would address gaps and a lack of coordination in the current system, where, for example, a single patient can lose benefits after moving to another state.
"The current federal-state partnership for financing HIV care is unresponsive to the fact that HIV/AIDS is a national epidemic with consequences that spill across state borders," the panel wrote.
- The availability of treatment encourages HIV testing and counseling. Ideally, people would get tested regardless of whether treatment was available, motivated by a desire to avoid unwittingly transmitting the virus. That doesn't happen. If no treatment is available, the majority of people would rather not know. For all of the talk about universal precautions, testing is still the cornerstone of HIV prevention.
- Drug treatment dramatically reduces the amount of HIV in the blood and in other bodily fluids. Although HIV is probably still present in genital secretions even if undetectable in the blood, transmission risk is still much, much lower when viral replication is suppressed by medication. People who don't receive treatment are more infectious - especially as HIV disease progresses.
The Department of Health and Human Services, which sponsored the study at Congress' request, suggested the panel's recommendations were overreaching.
