Thousands of low-income Illinoisans who have the AIDS virus could find themselves with fewer choices for life-sustaining medicines and more hurdles to get treatment, as the state continues to grapple with an unprecedented budget crunch amid increased demand and high drug prices.
Illinois has reduced the number of medications available to patients or has capped how much can be spent on the drugs through a state assistance program. Officials also have added layers to the process of how to sign up for — and stay enrolled in — the state-run AIDS Drug Assistance Program, which pays for medicines for poor and low-income Americans.
This comes at a time when state governments across the country have instituted cost-cutting measures in the federally funded program as they deal with the still-struggling economy, putting many HIV and AIDS patients on waiting lists, making eligibility harder or reducing drug options.
Meanwhile, stubbornly high unemployment is increasing patients’ need for assistance to pay for HIV drugs as more people lose their jobs — and health insurance coverage — and struggle to pay out of pocket for pills. In Illinois, the number of patients enrolled in ADAP has jumped 14 percent in the past year, to 6,000.
Illinois so far has been able to stave off putting patients on a wait list, a trend that is growing in at least 10 states. More than 6,000 patients nationwide were waiting for drugs as of early February, with the largest number in Florida, and hundreds more are at risk of being dropped from programs, according to the National Alliance of State and Territorial AIDS Directors.
Some advocates for AIDS patients are concerned that states’ cost-cutting strategies could turn back advances to combat the disease by decades, to a time when patients had no or few treatment options and an HIV infection often led to full-blown AIDS, then death. In the late 1980s and early 1990s, before AIDS drugs were approved by federal regulators to become widely available, the death rate from the virus rose rapidly.
“We’re calling it a death warrant,” said Michael Weinstein, president of AIDS Healthcare Foundation, a national advocacy group based in Los Angeles.
More than 1 million Americans are estimated to be living with HIV/AIDS. Anti-retroviral drugs lower the amount of HIV in the blood to undetectable levels, increasing patient survival rates and reducing the chances of transmitting the virus, according to the U.S. Centers for Disease Control and Prevention.
But HIV medications are expensive. Some pill regimens can cost $2,000 or more a month, particularly for newer drugs. Less expensive medications are typically older and can become resistant to the disease.
The cost of these drugs is forcing some HIV patients who are on waiting lists to sell off assets and scramble for assistance from drug company charities.
“I am on a wait list, and it’s scary,” said 31-year-old Steven Dimmick, of Jacksonville, Fla., who last year sold his home and car and filed for bankruptcy protection to free up money for his pills, which cost $1,400 a month retail.
For now, Dimmick is relying on a pharmaceutical company’s drug assistance program.
“If I stop taking the medicine, I could get AIDS very easily,” Dimmick said. “Now, I am just in survival mode.”
AIDS Healthcare Foundation and other advocates have been frustrated that Congress and the Obama administration have not filled the financial void left by states, saying ADAPs need about $126 million from the federal government. The program gets grants from the federal government that then are matched by states, which vary in how they administer and provide funds for the benefits.
States and the federal government say they need to balance the needs of people with HIV/AIDS with those of other government programs.
“The Illinois Department of Public Health recognizes the importance of programs like ADAP,” spokeswoman Kelly Jakubek said. “The department will continue to do what it can to provide low-income and underinsured individuals living with HIV/AIDS the life-saving drugs and treatment they need.”
Obama administration officials say they have worked to reduce the size of the waiting lists and ease the impact of other cost-cutting measures by the states. A spokesman for the U.S. Department of Health and Human Services said the federal allocation toward ADAP, which was $835 million in fiscal 2010, has risen over the last three years and the “fiscal year 2011 amended budget totals $50 million over the fiscal 2010 enacted level for ADAP.”
In the meantime, nonprofits are partnering with the pharmaceutical industry in an effort to chip away at the problem.
A group led by Heinz Family Philanthropies of Pittsburgh and South Carolina-based Welvista has been working with North Chicago-based Abbott Laboratories and nearly a dozen other drugmakers to wean from ADAP waiting lists those patients who don’t qualify for assistance from Medicaid, the federal-state health insurance program for the poor.
So far more than 650 people from waiting lists have been enrolled in the program, which gives them medications for 12 months.
“It is very unclear when Congress will allocate the needed funding,” said Jeffrey Lewis, president of the Heinz Family Philanthropies. “And, as they continue to wait, more and more states are adversely impacted because many have simply run out of money.”
Instead of putting HIV/AIDS patients on waiting lists, some states have lowered the income threshold for eligibility to $21,000 for a single-person household and added more paperwork, requiring patients to re-enroll for program benefits. In Illinois, patients must re-enroll in ADAP every six months.
Advocates said those policies can have the same effect as putting someone on a waiting list.
“This is an artful concept whereby you simply get people to drop out of the program,” AIDS Healthcare Foundation’s Weinstein said. “It is rationing, but they are not calling it that.”
Illinois health officials say they are trying to mitigate any burden to people with HIV. They defend the state’s $2,000-per-month cap on patients’ access, saying the average cost per person is $1,050.
In addition, Illinois officials said, the state runs one of just six ADAPs in the country that allows patients to have an income of up to 500 percent of the poverty level, or $54,150 for an individual, and still be able to participate in the program.
“The Illinois ADAP has made no dramatic cuts,” said Melaney Arnold, spokeswoman for the state Department of Public Health, which administers ADAP. “The number of medications on the formulary was reduced as part of a cost-containment strategy and also to remove some older medications that were not being used frequently.”
By Bruce Japsen
Los Angeles Times