AEGiS-BAR: An ADAP crisis again? Enough already!

Important note: Information in this article was accurate in 1996. The state of the art may have changed since the publication date.

An ADAP crisis again? Enough already!

The Bar Area Reporter - April 8, 1996
Edward Zold, ACT UP/Golden Gate Writers' Pool

Two weeks ago, we reported in this column the crisis facing California's AIDS Drug Assistance Program (ADAP) and ADAPs nationwide. At the time of publication, we were anxiously awaiting a decision from the state Department of Finance on a request for augmentation that would give the program funding to cover its deficit (approximately $4 million) and add epivir (3TC) to ADAP formulary. As of April 5, we are still waiting. Meanwhile, the state Assembly and Senate are reportedly planning hearings on tightening eligibility criteria for the program. The news, however, is not all bad.

This latest (and most alarming) in a series of inexcusable management errors has been the proverbial "last straw" for activists who have watched this comedy of errors for years. The good news is that those activists, advocates, and ADAP enrollees now agree that it is time to make some major changes to the program.

Finding funding

Adding drugs to the ADAP formulary has always been a difficult task. This time around, it has been excruciating. Top priority has been covering the program's deficit ($4 million) to insure that many counties are not forced to shut down completely before the end of the state fiscal year. The need to find additional funds for the addition of the protease drugs and epivir left the state Office of AIDS (OA) no choice but to attach this request to their request for augmentation - bringing the total to $7-9 million.

It would be difficult for any state office or department to explain why such a need was not foreseen at the beginning of the fiscal year. Additionally, OA, which has a big chunk of federal money to plan for and evaluate this program, has had a lot of explaining to do. It's taking a while, too, for the necessary people in the state bureaucracy to buy the excuses that OA is concocting. The viability of this augmentation request has been so uncertain that without the work of AIDS advocates, the addition of these drugs would be nothing but a pipe dream.

In California, LIFE Lobby, ACT UP/Golden Gate, Project Inform, AIDS Project Los Angeles, San Francisco AIDS Foundation and others have together identified several viable plans to add epivir and protease inhibitors this year and cover the deficit.

Results of community efforts are impressive. Congresswoman Nancy Pelosi and her aide, Dr. Steve Morin, after meeting with several AIDS advocates, were instrumental in getting a $52 million augmentation to ADAP programs nationwide from Congress. Meanwhile, California officials have "felt our pain" as letters, phone calls, and faxes have offered the same advice over and over: cover the deficit and add the drugs!

Community-based AIDS organizations have successfully intervened, while the state bureaucracy has yet to deliver anything. Most community-based advocates know the difference between access to the standard of care and no access: life or death. This motivation is reflected in quick results, unlike the state bureaucracy that has pursued half-measures at a leisurely pace.

Who is more able?

OA's failure to effectively conduct planning, evaluation, and administrative duties is what some activists believe to be the cause of this crisis. There was no plan, there had been little evaluation done, and basic administrative tasks had not been done. Community organizations took on many of these tasks. As a result, we now have a cost projection based on an evaluation of current and future need for ADAP and reasonable estimates on other program statistics.

The performance of community-based organizations in contrast to DA's dismal record on ADAP begs the question: who is more able to manage ADAP?

In prevention and many care programs, the introduction of community planning, oversight, and management created radical change. Programs once forced to meet ill-conceived, rigid goals have in many cases been replaced by innovative, dynamic programs centered around the needs of at-risk or infected individuals.

Local success stories include a multi-service substance abuse/mental health/HIV prevention agency (18th St. Services/Operation Concern), an agency that provides case management to any person with HIV/AIDS in San Francisco (San Francisco AIDS Foundation) and a multi-service, comprehensive program serving high risk and HIV-positive youth (Larkin Street Youth Services & Cole St. Clinic). These are some of the complex programs that serve as a lifeline to many of us. Federal funds are allocated to them by community planning groups, based on our city's needs and their success in meeting needs with services.

Unlike state and federal bureaucracies, community-planned services are funded through contractual agreements that set performance standards and allow for the termination of contracts with agencies failing to meet their responsibilities. Federal, state, and local health agencies and government contractors make technical assistance and support services available to enable agencies to fulfill their obligations.

Need and priorities are evaluated every year before any funds are committed (zero-based budgeting). The result has been a more calculated, quick response to changes in community need. Few government systems, state or federal, are agile or informed enough to operate in such a manner. Organizations in communities across the country have proven that community-based planning and management is among the most effective service delivery models. It may therefore be time to apply this model to ADAP and take it out of the hands of its negligent guardian. Ironically, AIDS advocates are demanding for ADAP what Republican leaders are demanding for many programs: community control over funds instead of government waste.

Let MediCal do it

Other proposals are being studied by AIDS advocates and state officials. The strongest of them maintains state control of the program but consolidates administration, planning, and evaluation with MediCal (California's Medicaid program).

MediCal pays lower prices for drugs, conducts detailed evaluations regularly and does financial planning based on evaluation data. While by no means an extravagant health plan, MediCal adds AIDS drugs immediately upon FDA approval (unlike the tedious process for adding drugs to ADAP) and negotiates rock-bottom prices from pharmaceutical companies, leveraging funds for other drugs or medical services. Enrollment will be consolidated as well, guaranteeing that applicants unqualified for one will be screened for the other. Additionally, a consolidated information system can catch county billing errors - which last year drained millions in funds from ADAP instead of MediCal.

Such policies may very well enable California to live up to the mission of ADAP: to respond in a compassionate and cost-effective way to this epidemic by providing access to treatments for all, regardless of insurance status.

OA's system for managing ADAP has broken down. While systems that fail are sometimes repairable with years of work and strong commitment to change, one has to ask: why continue to put the limited energy of activists and advocates into a fourth year of a time-consuming effort to repair it?

Responsible entities with records of success and good management can meet the challenge now. Now is when we need care and treatment for HIV. Now is when we need public funds allocated for those purposes to be spent responsibly. It is now time to put ADAP in the right hands. t

'Ironically, AIDS advocates are demanding for ADAP what Republican leaders are demanding for many programs: community control over funds instead of government waste.'

ACTION BOX:

Killing time is killing people!

Stop the madness! State officials are still withholding treatment from PWAs while they try to sort through the mess that they have made of ADAP.

Call Governor Pete Wilson: (916) 445-1114; or Craig Brown, director, Department of Finance: (916) 445-4141. Let them know that you are tired of people with AIDS being punished for the carelessness of state employees! Insist that they reform ADAP immediately or turn it over to a competent and concerned entity.

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