Congressional budget battle may create long-term HIV care deficits

'Sacred cows of various types are going to get gored.'

The news for HIV care and treatment funding looked particularly bleak by August 2011, when the waiting list for AIDS Drug Assistance Programs (ADAPs) topped 8,600 people and the government's near-miss on a federal credit default resulted in legislation that could be devastating to low income people who are living with HIV/AIDS.

"There's a definite sense of fear in the advocacy community that the net results here will be indiscriminate cuts," says Bill Arnold, director of the Community Access National Network (CANN), which advocates for sustainable funding for ADAPs.

"The conventional wisdom amongst the House and Senate and White House staff I've talked to is the budget fight will go on at least until Thanksgiving and likely Christmas and maybe into January, February, and March next year," Arnold says. "Regardless of the funding outlook, sacred cows of various types are going to get gored."

ADAP funding already is in peril as the federal government increasingly has shifted more of the weight to states, and states cut ADAP funds dramatically for a couple of years. While some states returned ADAP funding to its previous levels, other states have let their formularies shrink, lowered their eligibility criteria, and watched waiting lists grow for antiretroviral treatment.

"The federal share of ADAP budgets has been steadily declining over the years," says Julie Scofield, executive director of the National Alliance of State and Territorial AIDS Directors (NASTAD) in Washington, DC.

"State funding increased to 19% in FY10; it had fallen to 17% in the early part of the recession, but we've seen some restoration of those funds, and the state contributions to ADAP increased 61% since FY09," Scofield says. "Some state legislatures are really kicking in funds to the state ADAP programs to prevent waiting lists and having people go without their medicines."

The Fiscal Year 2012 (FY12) budget included an additional $50 million for ADAP, and the total amount appropriated is at its highest level so far. But this still results in underfunding since the number of people applying for ADAP help each year has increased dramatically since the advent of the more potent antiretroviral drugs.

The most recent Centers for Disease Control and Prevention numbers show that the HIV new infection rate has remained high at 50,000 new cases a year. With more people living longer with HIV/AIDS and the epidemic's greater impact on poor communities, the need for ADAP assistance grows each year.

"We have a minimum need of $126 million more and an actual need of $300 million," Arnold says. "Is $50 million enough to stop this tide going on? No."

But by this winter, $50 million extra might look like a windfall. ADAPs, as well as Ryan White Care Act funding, and other sources of federal help in fighting the HIV/AIDS epidemic could face draconian cuts as a result of budget fighting.

"It's too early to speculate what the immediate impact is, but certainly it's going to be very difficult," says Ronald Johnson, vice president of policy and advocacy for AIDS United in Washington, DC.

"It's a difficult funding environment, and we're going to have to make a strong argument as to the need to continue to have funding that addresses the ADAP crisis and the HIV epidemic in general," Johnson says. "Yes, there's an overall fiscal constraint on spending, but even allowing for that we will need to press the Congress that there has to be adequate funding to address ADAP and other aspects of the HIV/AIDS epidemic."

Early treatment cost effective

HIV/AIDS advocates say they plan to make the case that money spent in HIV care and treatment is money well spent for more than humanitarian reasons. It can also serve as the most effective prevention strategy yet researched. A study recently published in the New England Journal of Medicine, shows that antiretroviral therapy (ART) can reduce the risk of HIV transmission between serodiscordant heterosexual couples by 96%.1

"On the science side, it's an exciting time," says Andrea Weddle, executive director of the HIV Medicine Association (HIVMA) in Arlington, VA.

"Researchers have documented that HIV treatment where one person is positive and the other is not can result in transmission being reduced by 96%," Weddle says. "Also, the risk of death is dramatically reduced when people start treatment earlier."

These two facts suggest a need for more HIV treatment funding, but the resources are too limited, she adds.

"This is a really frustrating time," Weddle says. "We must be creative and continue to advocate and prioritize HIV programs, health programs, and those serving low-income populations, and really support pushing forward with health care reform."

Now that the science and medicine have found a way to gradually end the epidemic, the main obstacle is access to care. Only 50% of people with HIV in the United States have reliable access to HIV treatment, according to the HIVMA and the Ryan White Medical Providers Coalition.

HIV/AIDS groups typically have found congressional allies from both sides of the aisle. Ever since the 1980s and early 1990s when the nation was jolted from complacency about the AIDS epidemic when Rock Hudson and Magic Johnson joined the ranks of the HIV infected, there has been some political will to fight the epidemic.

"You can go back to the 1980s and early 1990s where many politicians didn't want to do anything about HIV at all until nationally-known people started dying and family members started coming out of the closet," Arnold says.

Now, things have shifted again, Arnold says.

AIDS advocates can still gain traction with their traditional friends in Congress, but with some of the newer politicians, the arguments in favor of expanding HIV treatment runs up against an implacable barrier.

"In the current political climate everyone has a stronger case [for increasing funding], but the people who are driving the agenda don't care about that," Arnold says.

"They just don't want to spend the money," he adds. "And it's immaterial if not spending the money now will cost five to six times as much 10 years out — that's just not part of their discussion."

Another risk emerging from the unprecedented budget battles is the impact on Medicaid and Medicare, particularly in a couple of years when the Affordable Care Act provisions all are in place. If Congress withholds funding for health care reform provisions, then there will effectively be little to no improved access to care for those too poor to afford health insurance, including many who are infected with HIV.

"In theory, bits and pieces of Medicaid are still protected," Arnold says. "Some people have signaled that cuts will hit providers first, but what good are Medicaid programs if doctors stop accepting Medicaid?"

Medicaid and Medicare provide a huge amount of HIV health care so any cuts to these programs will damage the HIV population significantly, he says.

"For example, in 2014 if states all cut their Medicaid programs back to where they're useless, then what are the HIV-positive folks going to do if Medicaid doesn't cover anything that's important to their disease state?" he adds. "They'll be stuck in Ryan White funding streams which also are on the block to be stopped, so we're besieged from all fronts."