The ADAP Working Group : Interview Date: June 27, 2004
Subject: William E. Arnold; Interviewer: Gordon Nary

ADAP Fund: Many in the US AIDS community were taken by surprise by the June 23 White House Announcement that $20 million in HIV drugs will be distributed to states with ADAP waiting lists. Apparently the advocacy efforts by The ADAP Working Group, Title II
Community AIDS Network, Congressional Black Caucus, American Academy of HIV
Medicine, HIV Medicine Association, Save ADAP, and others have had some impact on the White House staff. Some in the AIDS community are now hopeful that state waiting lists may soon be eliminated. How many people on state ADAP waiting lists will the $20 million drug allocation cover?

Arnold: $20 million would cover a year's supply of HAART for 1,650 to 2,000 people with HIV disease - depending on the specific drug regimens involved.

ADAP Fund: How many people are currently on state ADAP waiting lists?

Arnold: According to the latest NASTAD [National Association of State and Territorial AIDS The ADAP Watch, there were 1629 people on state ADAP waiting lists as of June 7, 2004. This number included the addition of 366 people to state waiting lists during the previous two months.

ADAP Fund: How many people on average apply to ADAP each month?

Arnold: Between 450 to 650 people apply to state ADAPs every month for the drugs that they need to survive. Those states that have the resources will enroll the majority of their ADAP applicants. Those states without adequate resource will have to consider eligibility restrictions, reductions in their drug formularies and/or placement of applicants on waiting lists.

ADAP Fund: Did the White House announcement signal a commitment by this Administration to eliminate the need for state waiting lists and other restrictions on access to HIV drugs?

Arnold: The Administration is committed to eliminating ADAP waiting lists and providing everyone in America who needs quality HIV care access to such care. Everyone who has formally or informally interacted with the Administration knows this. The debates and disagreements are not on what should be done, but rather how to do it, and whether additional federal funds should be committed to that effort. In short, disagreements are over money, the federal budget and spending clashes. There are two fundamental questions around which the debates revolve:

• Should priority go to drugs and/or medical care?
• Can we meet these goals without spending more money?

There is no consensus on the answer to the prioritization question. There are countless discussions around cost-effectiveness in general. There are also heated debates on the most cost-effective use of federal, state, and local funding stream contributions to reduce the increasing financial strain on emergency room, hospital intensive care, and home healthcare for people with AIDS who have not had access to appropriate drugs and care to prevent their HIV disease progression.

ADAP Fund: As one who reads political tea leaves more accurately than anyone since Jean Dixon, do you feel that the White House announcement portendsany action on the reauthorization of the Ryan White CARE Act?

Arnold: Aside from the very welcome official signal that the US AIDS epidemic needs a reauthorized Ryan White CARE Act, most assume the Administration's signals were that a priority needs to be given to both medical care and drugs. There are also clear signals for more flexibility in use of all CARE Act funding and that specific results (and thus accountability for outcomes of all funded programs) will be sought. Again, there are no surprises here to those working on these issues in Washington. It is no secret that state health departments also want more flexibility. And it is no secret that Congress may not have the highest confidence in either HHS or state government ideas of what the term flexibility might mean, or how well such flexibility would be exercised if they would allow it.

ADAP Fund: How does this White House initiative impact the $217 million requested from Congress for ADAP support for 2005?

Arnold: It does not impact our request at all. If one assumes that the $20 million will clear the current waiting lists and we do not get the necessary $217 million in ADAP funding, the waiting lists will start up again shortly after the 4th of July. The $20 million in HIV drugs is not a declaration of independence from state waiting lists. The Administration has helped those who are currently on waiting lists. But there has been no help for those thousands of medically indigent men and women who will be diagnosed with HIV each year who may become new waiting list statistics.

While the President's chosen approach is laudable for its sense of emergency and demand for fast action, our government has not been successful in solving the domestic ADAP crisis by allocating adequate ADAP funds or the international AIDS crisis by facilitating delivery of the promised HIV drugs to the epicenters of the pandemic. This has been an embarrassment to many.

Our government's approach to HIV drug access can be fraught with problems for people with HIV disease, ADAP programs, and state and federal administrative staff. Our current policies are embedded with political and ethical time bombs. The fiscal year 2005 ADAP financial need was for $217 million in budget appropriations with $117 million made available now via an ADAP Emergency Supplemental Appropriation. However, the Administration has attempted to respond to the waiting list challenge with a $20 million stop-gap plan. The $20 million will probably solve about 10% of the known ADAP problems - but it will not solve the
central problem of drug access for the several thousands of medically indigent diagnosed with HIV every year that will turn to an ADAP for a lifeline.

With these problems still unresolved, are we grateful for solving 10% of the problem? Yes, we are very grateful. Raising the issue in a Presidential speech was a definite act of political leadership and clearly demonstrates that something must be done quickly. This is certainly real political leadership on the part of President Bush and Secretary Thompson on an issue of great importance to Hispanic, African-American, and Gay and Lesbian communities. Even if the solution proposed is just a "start" to solving the problem we should be grateful for the Presidents' actions. Is it our responsibility to continue the work and even step-up our efforts to solve the remaining 90% of the ADAP crisis? Of course it is.

ADAP Fund: How equitable is this stop-gap initiative on states who have provided the necessary financial support for their ADAP programs to avoid major formulary cuts and waiting lists? Will this announcement make it more difficult for future state ADAP appropriations?

Arnold: No one thoroughly evaluated the questions of equity, sufficiency, or unintended consequences on the $20 million ADAP stop-gap plan. Possibly the White House may not have given the responsible parties at HHS sufficient time to do so. It is an election year. So when marching orders come from the White House, there may not be adequate time to marshal the most effective recommendations from the ground troops who battle the inequities of drug access for the medically indigent with HIV disease.

States that have worked long and hard to secure funds to insure that their ADAP programs did not have to reduce their drug formularies, restrict their eligibility requirements, or implement waiting lists are unhappy about the equity of the White House initiative. For example, there are several states faced with having to create waiting lists in the next few weeks and months, and those states are audibly angry.

Sometimes in the rush to implement a new policy that may have significant benefits for some, we may fail to thoroughly evaluate the consequences of the policy on others. This is the fundamental challenge of distributive or social justice. Many states have been understandably disturbed over the equity of this policy and are asking:

• "Why did people with HIV disease in state "x" get special attention and our people were ignored?"
• "We run a far better and more comprehensive ADAP program than than does state "x" and our people are getting a raw deal."
• "They are going to send drugs to people in a state that doesn't even have protease inhibitors on the ADAP formulary. Our formulary covers antiretrovirals and OI [opportunistic infection] drugs How fair is that?"
• "We have to open an ADAP waiting list in eight days. Why won't the Administration help us?"

Because there are always life and death implications on drug access policies, one should expect hard questions on any policy perceived to be inequitable. Many of these questions come from those who work with ADAP applicants. Their hearts often break when they are unable to help those who look to them for access to HIV drugs. Some secretly dream of performing "loaves-and-fishes"-type miracles and
providing unlimited drugs for all who need them. But dreams are only dreams. The reality is that they must often settle for less perfect and sometimes painful resolutions.

This welcome gesture from President Bush should not make future appropriations any more difficult. The needs all remain as they have been for the last 3 to 4 years. Each month 450 to 650 people with HIV look to ADAPs for access to HIV treatment. We will either have the political will to ensure that these patients get appropriate treatment for their disease or we won't and everything remains as it was. We sometimes forget that HIV attacks both the person and the society. Unless people with HIV disease get access to effective drugs, they suffer and die. And our society also suffers and dies. We suffer from the financial burden of end-stage HIV care and slowly die from the loss of our moral sense of right and wrong as we refuse to to help the most vulnerable among us who depend on us for their survival.

ADAP Fund: Should access to HIV drugs by the medically indigent in our country be an entitlement?

Arnold: Yes for both moral and fiscal reasons. The moral argument should be obvious. Government has an obligation to protect its most vulnerable citizens from unnecessary suffering and death. Some policymakers have failed to appreciate the fiscal argument. It should be very clear from multiple and reliable data sources that keeping HIV-positive people healthy, working, paying taxes and raising their families is much less costly than allowing avoidable AIDS deaths accompanied by the incredible expenses of end-stage hospitalizations and accompanying societal costs of orphans, broken families, and the other consequences of unnecessary suffering and death.

There are opportunities to do some of this work in the reauthorization of the Ryan White Care Act. There are models in the Early Treatment for HIV Act (ETHA). The Institute of Medicine has advanced their own entitlement recommendations. There are state level models involving a high-risk insurance pool mechanism that offer tremendous cost savings and have great appeal.

There are a number of viable approaches. It remains to be seen if all stakeholders will be able to come to consensus on a single approach that will do a good job for HIV+ patients and for the US health care delivery systems, as a whole.

ADAP Fund: Thank you for taking time on your day off for this interview. Your insights into these issues and challenges are a valuable resource for the US HIV care advocacy community and others who believe that all healthcare for the medically indigent should be a human right.

William E. Arnold is the Vice Chairman and CEO of the Title II Community AIDS National Network, Inc., Director of the ADAP Working Group, and Secretary and Treasurer of AIDSETI (AIDS Empowerment and Treatment International).

Gordon Nary is the executive director of the AIDS Drug Assistance Protocol Fund and Medical Advocates for Social Justice. His editorials and articles on state ADAP waiting lists include: Yin, Yang, and Tuskegee-Lite: Ethical Concerns Over HIV Testing in ADAP-Challenged States; No Exit: Are State ADAP Waiting Lists a Metaphor for Hell?; Magda Sorel and State ADAP Waiting Lists; and A Proposal to Reduce Deaths on State ADAP Waiting Lists 040627
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