By Bob Roehr
WASHINGTON, D.C. – Reauthorization of the Ryan White CARE Act, which has moved at a glacial pace for about two years, is now moving at the speed of an avalanche. And some AIDS advocates who had pressed for action are wishing that things would slow down.
The ice cracked on May 9 when staff members from the House and Senate, who have been working on crafting a bipartisan, bicameral piece of legislation, released a timeline for action, and the following day, a draft of the bill itself. Comments were due by the close of business May 12.
The final Senate version of the legislation was scheduled for release on May 16, with committee markup on May 17, and a vote in the full Senate likely within weeks. The House version is likely to be dealt with in committee in time for floor action during “Health Week,” which begins June 19.
Staff devised the congressional tactics to minimize opportunities for amendments so that both chambers pass the same piece of legislation and avoid the need for a conference to iron out differences.
The reauthorized CARE Act is a tightly crafted set of compromises where none of the competing advocacy interests gets all that they wanted or all that they feared. Nor does it appear likely that significant new funding will be added to meet the growing needs, though incremental increases in money may reduce the pain somewhat.
The draft retains the basic structure of the program titles, however, it does further subdivide Title I into three categories of cities receiving support. It establishes a process for the transition to distributing funds based on reported cases of HIV rather than AIDS. And it increases funding in areas where the epidemic has recently grown most rapidly, in the smaller cities and rural areas of the South.
The National Association of State and Territorial AIDS Directors is “extremely disappointed” with the draft bill and said so in a seven-page letter to the sponsoring congressmen.
“The current proposal would make a complicated piece of legislation even more so and would further fragment a system of care designed to ensure a comprehensive system of care and treatment for people living with HIV/AIDS across the U.S. … [It] would significantly weaken the role of the states while increasing their administrative burden,” the letter said.
Bill Arnold, who represents the Title II Community AIDS National Network focusing on the AIDS Drug Assistance Program, was less harsh. “This legislation may maintain and even slightly improve the status quo but it will not and cannot be expected to provide the current standard of care to patients in treatment nor provide the resources necessary to bring those who should be treated into care,” he wrote Hill staffers in response to the draft legislation.
Arnold criticized the federal government for being either “unwilling or unable to provide any needs-based estimates” of what levels of funding the program should be providing. He urged increasing the eligibility criteria from 200 percent to 300 percent of the federal poverty level, and technical changes to the “hold harmless” provision that would limit the reduction in ADAP funding to a single state to no more than 7.5 percent over five years.
AIDS advocates have pushed for an addition of $70 million each year for ADAP to fully fund recommended drug formularies and eliminate the waiting lists that restrict access to drugs. The draft bill calls for a one-time addition of only $30 million.
A technical fix is being offered by members of the Senate Finance Committee that would allow costs incurred through ADAP, the Indian Health Service and other qualified programs and designated hospitals to count toward a beneficiary’s annual out of pocket threshold for purposes of Medicare.
“This is likely to provide $35 to $50 million a year in relief to ADAPs,” Arnold says. “It is vital to insuring that ADAP is the payer of last resort,” and make most effective use of those funds.
A new controversial requirement requires 75 percent of funds go to “core services.” The term, however, has not been defined in the legislation. Some AIDS advocates are pressing for Congress to do so rather than leave it up to the regulatory prerogative of the Secretary of Health and Human Services.
AIDS Action, the lobbying arm for most of the nation’s community-based AIDS services organizations, said in its written comments that it was “unable to take a specific position on the draft bill” until funding information is released.
Data runs on the financial impact of the changes for each program title to each state were not released until after the comment period had closed on Friday.
AIDS Action is particularly concerned that the 75 percent of funding for “core services” be calculated only after 10 percent administrative overhead and 5 percent grant management is deducted. It also argued that the definition of “core services” should include case management and substance abuse treatment for people living with HIV.
The draft legislation also foresees development and switching to a “severity of need index” as the basis for allocating funds. But this crucial mechanism also has not been defined in the bill.
NASTAD noted that government panels “are having great difficulty identifying reliable universally available data that might be used to make allocation decisions. At a time when the panels are forced to use a proxy for even the most straightforward indicator of need (i.e., HIV cases), we believe it premature to direct the allocation of funds to states based on a yet to be tested severity-of-need index.”
AIDS Action also criticized the prohibition of funding, programs and materials relating to sexual activity and injection drug use. It said, “HIV is a disease about sex and drugs. It cannot be prevented or adequately treated without addressing the issues of sex and drugs.”
AIDS Action criticized the short time period for comments which “may not allow the community proper consideration of a number of important issues.”