Waiting for Your Life: A Closer Look at a
Growing Public Health Disaster

From busloads of seniors crossing the US borders seeking cheaper prescription drugs to the
rationing of expensive antibiotics in hospitals, it seems not a day goes by without some news
coverage of the continuing public health crisis facing America: the lack of universal healthcare.
Among the majority of people living with HIV disease in this country, the Ryan White CARE
Act–funded AIDS Drug Assistance Program (ADAP) had, until recently, succeeded in meeting
the healthcare needs of those with low-income, uninsured and underinsured. But after 4years of
under-funding caused by the erosion of the federal commitment to domestic HIV care, a new day
is dawning in America. The evidence is mounting in the form of ADAP waiting lists, and it’s about
to get a lot worse.

What is at stake is a model program that grew out of an unmet need. People come to ADAP
because they cannot afford the costly drugs themselves. Even if they could afford the premiums,
they are legally barred from purchasing insurance policies. They are likely to work at low-wage
jobs that usually do not come with health benefits. They are unable to meet the stringent financial
and medical requirements to qualify for Medicaid. They come to ADAP because they have no other
options. Given the limited discretionary funding, it is remarkable the extent to which ADAP bridges
this gap. It is the last resort in this country’s publicly financed HIV healthcare safety net.

As the end of the 2003 ADAP fiscal year approaches and funding begins to run out, the list of ADAP
closings are growing longer. Not surprisingly, this list also reflects states where healthcare coverage
gaps are the largest and ADAP dollars are stretched the thinnest.

The decision to close enrollment is not an easy one. Each program must ensure uninterrupted
coverage for its current clients to prevent the development of drug resistance. Once that mark is
reached, the program must either cut back on benefits or close the door to new clients. Changing
program design to prevent closure can be accomplished in two ways: reducing the number of drugs
covered in the formulary to accommodate more people, or impose stricter income limits in order to
keep the current level of coverage. But are these options available to states running out of funding?

Nationally, 95% of ADAP utilization is for antiretrovirals and for drugs for prophylaxis of opportunistic
 infections. However, for states currently  in crisis, drugs from these two core categories are the only
ones available on the formularies. A look at income levels shows that program financial eligibility cutoffs
n these states are set barely over the poverty line, with the eligible groups consisting mostly of people
making less than $20,000 a year. In other words, these are already barebones programs with no room
for cuts. So the programs close and the waiting lists grow. For most of the programs that have waitlists
and make public the number of people on the lists, rationing of newly available program slots are done
on a first-come, first-serve basis. Since the existence of a waitlist is of an emergency nature, only a few
states experiencing chronic funding shortages have developed policies to triage clients based on need.
For the most part, pregnant women are the only ones given priority. Medical need is sometimes
assessed on an individual basis.

All programs assist waitlist clients in seeking other ways to get medication. This is done through the
network of case managers affiliated with the program, either in local health departments or community-
based AIDS organizations. Because of this decentralized setup and the fluidity of the situation, accurate
data on waitlist clients are hard to come by.

Informal surveys of ADAP directors and case managers indicate that this temporary and patchwork
approach has to date prevented waitlisted clients from going  without treatment. In some instances,
emergency supplies can be obtained from clinics and hospitals that provide indigent care. But for the
most part, temporary access to treatment is obtained from charity patient assistance programs (PAPs)
operated by individual drug makers.

In order to get access to the programs, applications to PAPs must be filed for each medication the
client is prescribed. Depending on the program, the process can take just one phone call or up to 4
weeks of waiting. In most cases, the cooperation of the medical provider is required. For most
of these programs, frequent re-enrollments are necessary. At a minimum, access to treatment
through PAPs will take a motivated patient, a dedicated caseworker, a cooperative physician,
and a mountain of paperwork. Since PAPs are meant to provide temporary charity assistance,
using them to fill the gap caused by massive ADAP under-funding is a new and uncharted territory.
For the most part, these programs are designed with the existence of ADAP in mind; some even
use each state ADAP’s eligibility criteria in order to limit utilization.

Companies are not legally required to provide PAPs, and programs are known to close when generic
drugs come onto market. Most programs do not publish program eligibility criteria, keeping coverage
decisions to their own discretion. It remains to be seen how deep each company’s commitment is to
continue providing drugs to those in need.

The current ADAP waitlist situation, horrendous as it may be, is just the beginning of the catastrophe
coming this way. For the first time in ADAP’s history, the projected funding shortfall for fiscal year
2004 will be one fifth of the total program budget. New federal funding appropriations will barely allow
continued coverage for people already enrolled in the program. Over 7000 expected new enrollees will
be waiting at the gate by year’s end.  This previously unthinkable situation, at least domestically, is
based on the assumption that locally administered ADAPs will maintain their current infrastructure and
keep a waitlist. To keep a waitlist is to have the expectation that, eventually, the wait will end. In the
case of ADAP, the wait ends when slots open up from people leaving the program, either because of
death or by finding other forms of coverage. Largely, however, ending the waitlist is dependent on an
influx of money for a new fiscal year. Since this is clearly not the case, a more likely scenario will be
the  destruction of ADAPs as we know them today.

The dramatic drop in AIDS deaths has been used to illustrate the success of medical research, in which
the United States is the world leader. The availability of the resulting medications through ADAP has
played a pivotal role in our government’s response to this epidemic. From the fiscal standpoint, the cost
savings derived from keeping people healthy and out of costly emergency rooms and hospitals are invisible.
It is hard to imagine the state of the country’s healthcare infrastructure had ADAP not been there. Yet, the
day has now come when Americans themselves are denied life-saving treatment because of arbitrary budget
caps. Americans will die from a treatable disease because they cannot afford the advanced therapies that
are discovered and developed here.