The Bay Area Reporter - March 25, 1996
Edward Zold, ACT UP/Golden Gate Writers Pool

While many stories imply or state unequivocally that these drugs are the most promising development yet in the struggle to transform HIV infection into a chronic, manageable illness, few have focused on the other story about protease/combination therapy. The other story, while just as big, may offer some very valuable lessons to our community organizations and state officials. This is the story of a crisis situation, brought on by negligence and ineptitude, in financing the addition of these drugs to public assistance programs.

AIDS Drug Assistance Programs (ADAPs) and Medicaid prescription drug programs, both federally funded yet administered by states, are now scrambling to identify resources to cover these drugs for the significant numbers of program enrollees who have no other way to pay for prescription drugs. In California, funds to add 3TC to the ADAP formulary have been identified, which puts us ahead of the pack, to some extent. Meanwhile, ADAP enrollees (largely working people without health insurance or with insurance plans that do not cover drugs) lack access to these drugs.

While the crisis for ADAP enrollees who are ready to try a protease inhibitor is very real, the crisis apparently faced by ADAP administrators, some Medicaid program administrators, and state AIDS seems to some a false crisis (read: scandal).

ADAP is funded through Title II of the Ryan White CARE Act (you know, that bill that has been stuck in Congress forever and ever). In California, the state's Title II allocation is divided up among several programs, including a mandated 50% that currently goes to local community planning bodies (consortia). Local consortia set funding priorities and distribute these moneys to community-based and county-managed programs on a contractual basis. Funding levels for the other programs - CARE HIPP (an insurance premium subsidy program), ADAP, home- and community-based care and a housing subsidy program for rural PWAs - are set by California's Department of Health Services' Office of AIDS, based on the recommendations of the Comprehensive Care Working Group. The working group, made up of people with HIV/AIDS, service providers, and county and state officials, may make recommendations on the allocation of 40% of these funds.

Anyone who has not been lulled to sleep by this tour of our community-based bureaucracy may be wondering: where is the remaining 10% of these funds? Title 11 of the CARE act allows states to withhold a maximum 5% for planning evaluation and 5% for administration of programs. California's State Office of AIDS withholds the maximum allowable amount for each.

To many, 10% of a multi-million dollar pot of money may seem reasonable to cover the administration of complex programs and conduct evaluation and planning to ensure that programs evolve with the needs of people living with HIV/AIDS. At this point, however, many activists, people living with HIV/AIDS, and the elected officials in whose laps this crisis has fallen, have grave concerns about California's apparent failure to effectively carry out such responsibilities. Frankly, the sky did not open up this month and rain protease inhibitors, nor did 3TC magically appear a few months back. These drugs were the object of intense hype by the mainstream media for months before their approval.

Likewise, AIDS-specific and non-AIDS-specific medical journals, treatment newsletters, and the gay press (even this very column) vigilantly reported on progress on these drugs at every stage of their development. Few AIDS conferences or large meetings passed, whether treatment-oriented or not, without some discussion of these drugs moving through the development process. The advance news about protease inhibitors and their certain approval, it is safe to say, has been the most celebrated and hyped situation since the approval of AZT.

What plan, one might ask fairly, was made to provide for these drugs after the evaluation of ADAP utilization and demand showed that these drugs were on the way, would be in demand, and were expensive? Further, considering the annual deficit of approximately $4 million that the program has been running, what administrative measures were taken to prevent an all-out bankruptcy of the program before protease inhibitors were even approved, and to provide an accurate accounting of program expenditures as requested by activists and community-based organizations conducting their own analyses?

Those of us who have repeatedly asked these questions of our state officials have received a disheartening and disturbing response. Every indication, in fact, is that administration, planning, and evaluation on ADAP under the program's former director were severely neglected, to the extent that the $18 million program has been running a $4 million annual deficit (mentioned above). Of course, this estimate does not include the projected cost of new drugs - the state office of AIDS has not formally released to AIDS advocates any firm cost projections for expansion (the first step to conduct planning or evaluation).

The flood of information about protease inhibitors, moreover, seems to have reached everywhere but Sacramento, where ADAP's administrators have received significant funding to plan for such developments. We therefore find ourselves in a false crisis. This is no crisis; to the contrary, systematic neglect and ineptitude within California's State AIDS Office are finally being exposed, while people with HIV/AIDS go without the drugs that they need to maintain their health as a result.

ACTion UPdate

If you, too believe that denying people with HIV/AIDS access to promising therapies in order to compensate for sloth, ineptitude, and mismanagement of our tax dollars is unconscionable, we urge you to act. Call the following state officials as soon as possible and share your concern and indignation. Please tell them that you expect these drugs to be available through the AIDS Drug Assistance Program immediately.

S. Kimberly Belsche (916) 657-1426 Director, State Department of Health Services PO Box 942732 Sacramento CA 95814

Craig Brown (916) 445-4141 Department of Finance State Capitol Room 1145 Sacramento CA 95814

Pete Wilson (916) 445-1114 Governor, State of California State Capitol, First Floor Sacramento CA 95814

Sandra Smoley (916) 664-3345 Secretary, Health and Welfare Agency 1500 9th Street Room 240 Sacramento CA 95814
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