Why Some with HIV Still Can’t Get Treatment

When AIDS first struck, there were no drugs to treat it. People simply died.

Now, drugs reduce the amount of the virus people carry, making them less likely to infect others or to contract the deadly AIDS disease. With the right treatment, people with HIV can live relatively healthy lives for decades.

But an estimated one-third [PDF] of Americans diagnosed with HIV aren’t receiving any kind of treatment, according to government data. One big reason: They can’t afford it.

People with insurance can get much of their treatment covered. And now, under the Affordable Care Act, recently upheld by the Supreme Court, insurers are banned from unnecessarily raising their premiums, adding a lifetime cap to payouts, or dropping people from the rolls for having a preexisting conditions. Insurers will also be required to offer coverage to children with HIV/AIDS.

But many HIV-positive people don’t have health insurance. In 2010, the government estimated that less than 17 percent of Americans living with HIV have private insurance. Nearly 30 percent have no coverage at all. They don’t have coverage through a job, can’t afford private insurance and make just enough to disqualify them from Medicaid.

Medicaid is estimated to be the largest source of coverage for people with HIV, according [PDF] to the Kaiser Foundation, and the program makes up half of federal spending on HIV. But that coverage is still restricted.

States set their own poverty thresholds for people to qualify for Medicaid coverage, and amid the recession, some states have capped enrollment or cut benefits. Already, Medicaid is only available to those with an official diagnosis of AIDS in many states, according to AVERT, an HIV/AIDS advocacy group. That rules out treatment that would keep those who are HIV positive from developing AIDS.

The Affordable Care Act encourages states to expand their Medicaid provision, but according to the Supreme Court’s recent decision, the federal government cannot require them to do so. Some states, like Texas, have already said they won’t comply.

The fallback option for care is the Ryan White Program, named after a young boy with hemophilia who was diagnosed with AIDS when he was 13. Run by the U.S. Department of Health and Human Services, Ryan White provides stopgap funding to about a half-million people each year with HIV/AIDS who don’t have health insurance and can’t get enough or any coverage under Medicaid. The program gives money to cities with large populations of HIV-positive people, clinics, and programs specific to women and children.

On the Waiting List

Ryan White also funds the AIDS Drugs Assistance Program, or ADAP, which are state-run programs to provide medication to those in need, based on the number of reported HIV cases per state. States choose whether and how much additional funding to contribute — and determine who’s eligible. As of June 2011, ADAP served 138,173 people.

But for the last few years, ADAP has been facing a crisis. Better but more costly drugs have become available to improve the health of HIV-positive patients. But that’s made it more expensive for ADAP to keep up with the demand as people live longer lives, and led to waiting lists for people needing care.

An increased push to encourage people to get tested for HIV has also uncovered more people who were HIV positive and in need of care, adding to ADAP’s burden. The CDC and advocates who worked to expand testing anticipated an influx of HIV-positive patients, said Bambi Gaddist, who leads the South Carolina HIV/AIDS Council, a nonprofit HIV/AIDS prevention organization and spoke about the problem with FRONTLINE.

“The problem with it is that now we have tested them positive and we have no treatment,” she said. “That’s not just in South Carolina, that’s all over this country. …They say, ‘Be careful what you wish for, cause you’ll get it.’ Well, we’ve gotten it.”

ADAP’s crisis worsened [PDF] in 2004, when 11 states reported funding shortages. A total of 1,545 people were on waiting lists nationwide.

Then the recession hit. As people lost their jobs and health insurance, more turned to government safety-net programs, according to Ann Lefert, the director of policy and health-care access at the National Alliance of State and Territorial AIDS Directors, or NASTAD, which monitors ADAP funding. At the same time, budget woes led states to slash their own contributions. The waiting list reached its high point in 2011, with 9,298 eligible people waiting for care.

To create a buffer, NASTAD has worked with major drug companies to secure drugs for people on the waiting lists. A nonprofit organization named Welvista, for example, coordinates with ADAP, doctors and drug companies to provide medication by mail for some of those on the list until they can formally enter a program.

But such programs often only provide the antiretroviral drugs, not medication for what are known as “opportunistic infections” that occur because of the disease, Gaddist said. And, she added: “At the end of the day, there will be some that get nothing.”

The situation has since improved, Lefert said, as states have contributed more funds in the past two years. The federal government has also stepped in.

Federal funding for HIV/AIDS increased by $5 billion since 2008, with $22.25 billion budgeted for domestic programs this year, according to a report [PDF] from the Kaiser Family Foundation. The majority of those funds — $15.6 billion — are for health care and treatment services.

The Obama administration also released millions in emergency funding to bolster HIV programs, including $40 million in 2011 and an additional $35 million to be distributed this summer to ease the burden on ADAP.

But that’s still not enough to meet the demand, according to health-policy officials.  As of July 5, 1,958 people in nine states were on waiting lists for care, according to ADAP’s regular report [PDF]. The “vast majority” of these people are being assisted by Welvista or other programs as they wait, Lefert said.

But, she added: “We know there are people in the U.S. who don’t have consistent, comprehensive access to ARVs,” the antiretroviral drugs that treat HIV/AIDS. Missing doses can make the drugs less effective, and makes it more likely that the virus will become resistant to the drug, leaving patients with fewer options for treatment. Funding, Lefert said, is “not sufficient.”

It’s not clear whether or how many people have died waiting for care. NASTAD doesn’t track or confirm any deaths on ADAP lists. Gaddist, however, said that at least five people  on waiting lists have died in South Carolina.

Who’s hit hardest?

The epidemic has hit particularly hard in the south — about half of the people living with AIDS are in southern states, according to a 2010 Human Rights Watch report. The region has the highest rates of new infections, the most AIDS deaths, and the largest number of adults and teens living with HIV/AIDS. Minorities, particularly blacks, are disproportionately affected.

These southern states also struggle to secure sufficient funding. Local advocates like Gaddist say that the federal government has determined funding priorities based on the cumulative figures of people with AIDS instead of new HIV infections, which favors areas with older epidemics.

Another problem, Lefert said, is that many southern states don’t provide as much or any funding for Medicaid or ADAP programs, and rely instead only on federal dollars. “The gaps that they may be looking to fill are larger than in some other states,” she said. Rural areas in some southern states lack the proper infrastructure needed to deliver care, such as accessible clinics and affordable transportation for patients to get to their appointments.

The Centers for Disease Control and Prevention last year announced a change in its funding strategy, to be rolled out over five years ending in 2016, to target areas of the country that have a higher prevalence of HIV diagnoses, including southern states and additional cities. Some advocates fear that could shift critical funding from some states with older, historical epidemics. But health officials at federal and state levels agree that wherever the money goes, it won’t yet cover everyone in need.

“There are inadequate resources to address this national epidemic — or pandemic,” Gaddist said. “We are really bartering dollars.”