June 3, 2010 at 5:21 pm EDT | by Lou Chibbaro Jr.
House members say AIDS drug program in crisis

U.S. Reps. Barney Frank (D-Mass.) and Tammy Baldwin (D-Wis.) have joined 76 of their House colleagues to sign a petition to President Obama calling for $126 million in emergency funds for the federal AIDS Drug Assistance Program.

The petition, dated May 19, says the emergency supplemental funds are needed to reverse a growing trend among states to put in place waiting lists for the mostly uninsured patients that rely on ADAP to provide their life-saving AIDS drugs.

“It’s abundantly clear that without emergency action, the ability for ADAP programs to provide a safety net for low income and underinsured Americans with HIV/AIDS will be seriously damaged,” says the petition.

Carl Schmid, deputy executive director of the AIDS Institute, a national AIDS advocacy group, said a coalition of AIDS groups has urged the White House and Congress to boost the federal funding allocation for ADAP for more than a year.

“The ADAP problem is getting worse and worse,” he said. “We’re very concerned that the administration and Democratic leaders in Congress are not responding.”

Schmid and officials with other AIDS groups have said the health care reform legislation that Congress approved earlier this year is expected to lessen the need for ADAP. The reform measure will provide health insurance coverage for millions of Americans, including people with HIV and AIDS, who currently can’t afford it.

The new insurance system will include prescription drug plans that cover the expensive anti-retroviral drugs that have been credited with preventing people with HIV from progressing to full blown AIDS.

But AIDS group officials note that the new program won’t go into full effect until 2014, and more than 1,000 people with HIV who can’t afford the drugs are on ADAP waiting lists in at least 11 states.

That number is expected to increase significantly if Congress doesn’t approve an emergency supplemental funding of $126 million for ADAP this year and another increase of $370 million for fiscal year 2011, according to officials with state AIDS offices.

Congress created ADAP in 1987 as part of the sweeping Ryan White AIDS Care Act. It was intended to provide free or low-cost drugs to people with HIV who have limited financial resources and lack health insurance.

The program is structured so that each state and U.S. territory operates an independent ADAP, with the option of supplementing the program with state funds. Most states have added differing amounts of their own funds to the program.

According to the National Alliance of State & Territorial AIDS Directors, Congress appropriated 72 percent of the total ADAP expenditures in 2000. But by 2009, the federal share of ADAP funding dropped to 51 percent, with state budgets and discounts offered by drug companies picking up the balance.

NASTAD said the decline in the federal share of the funding did not occur due to a reduction in federal funds; federal funds for the program continued to rise at a modest pace. The percentage of federal funds declined because the number of new people enrolling in state ADAP programs increased dramatically over the past decade, in part because the effectiveness of the drugs has kept more people with HIV alive.

Additionally, in recent years, the economic recession has resulted in the loss of jobs along with the loss of health insurance coverage for large numbers of Americans with HIV, AIDS group officials have said.

At the same time, the recession has resulted in a dramatic drop in tax revenue for states, forcing most states to put in place large budget cuts. The cuts have hit state health departments, including state funding for ADAP.

The federal government’s failure to increase its share of ADAP funding to cover the large increase in people with HIV enrolling in the program at the same time that states have slashed their ADAP budgets has been the catalyst for a spike in ADAP waiting lists in a growing number of states.

In one case, AIDS activists have said South Carolina sharply cut its ADAP budget, threatening to prevent hundreds of people with HIV in need of AIDS drugs from receiving them. The cuts could lead to the death of people with HIV who might otherwise remain healthy if they had access to the medication.

Earlier this year, a heated dispute surfaced between NASTAD and the AIDS Healthcare Foundation, a national AIDS advocacy group based in Los Angeles, over whether calls for Congress to appropriate more money for ADAP should be linked to demands that pharmaceutical companies provide greater discounts to ADAP for the purchase of expensive AIDS drugs.

Both groups favor an increase in federal funds for ADAP, and both have said they support efforts to negotiate greater price discounts from drug companies for state programs.

But unlike the AIDS Healthcare Foundation, NASTAD and its allies favor lobbying Congress for increased ADAP funds on a separate track from efforts to secure greater price reductions from the drug companies.

Julie Scofield, NASTAD’s executive director, has argued that a coalition of state programs and various AIDS advocacy groups have succeeded in securing significant drug discounts from major pharmaceutical companies.

In a statement sent by e-mail in March to more than 1,000 groups and activists, AIDS Healthcare Foundation officials said federal intervention alone is not sufficient to curtail the ever-accelerating cost of ADAP spending on drugs.

“The undeniable driver of costs in ADAPs is the costs of the medications that are purchased,” says the statement.

It noted California’s ADAP, in which spending for AIDS drugs increased by 165 percent since 2000, while the number of patients served increased by 49 percent.

“This is equivalent to a 77 percent increase in per patient cost of AIDS drugs,” says the statement. “Even with ‘price freezes’ and rebates, the costs of the pharmaceuticals will continue to rise to a level that will bankrupt states, and force major programmatic concessions in eligibility and formulary.”

Among other things, AIDS Healthcare Foundation proposed that for every dollar of federal funds allocated for ADAP, pharmaceutical firms should be required to “contribute two dollars in additional rebate or price cuts.”

As of earlier this week, neither Congress nor the White House had moved forward any of the proposals for supplementing the ADAP budget through a special, emergency funding allocation for fiscal year 2010.

Sens. Tom Coburn (R-Okla.) and Richard Burr (R-N.C.), however, introduced a bill last month calling for extracting the $126 million advocacy groups say is needed for ADAP this year from federal stimulus money approved under President Obama’s economic stimulus legislation.

The White House and Democratic leaders in Congress have yet to officially take a position on the Coburn-Burr bill, but Capitol Hill observers say they don’t expect the president or most Democrats in the House or Senate to support the measure.

The AIDS Healthcare Foundation has endorsed the bill.

Lou Chibbaro Jr. has reported on the LGBT civil rights movement and the LGBT community for more than 30 years, beginning as a freelance writer and later as a staff reporter and currently as Senior News Reporter for the Washington Blade. He has chronicled LGBT-related developments as they have touched on a wide range of social, religious, and governmental institutions, including the White House, Congress, the U.S. Supreme Court, the military, local and national law enforcement agencies and the Catholic Church. Chibbaro has reported on LGBT issues and LGBT participation in local and national elections since 1976. He has covered the AIDS epidemic since it first surfaced in the early 1980s. Follow Lou

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