Our most important resources in addressing the
challenges of the state AIDS Drug
Assistance Program (ADAP) waiting lists are (1) the advocacy community’s
efforts
to convince Congress and state legislatures to provide adequate funding
for HIV drugs
and services and (2) the often heroic efforts of state healthcare
officials and their staffs
in responding to the often impossible challenges of meeting the diverse
needs for drugs
and services of people with HIV disease. But there is more that can be
done. And doing
more is the moral challenge that each of us faces.
Like the knight in Ingmar Bergman’s The Seventh Seal
who challenges Death to a game
of chess, we must also stare Death in the face and try to outwit the
master chess player
to save those on ADAP waiting lists who are pawns in the ultimate cosmic
chess game.
Our strategy must be to do whatever is necessary to postpone the
inevitable checkmate.
Medical Advocates for Social Justice offers two
recommendations that we believe are central
to resolving this challenge. First, to follow up on Dr. Bartlett’s
recommendation on the
importance of prioritizing people on state ADAP waiting lists (see page
16 of the Journal), we
recommend holding a workshop as soon as possible for state ADAP
directors and other relevant
state and federal healthcare officials to establish voluntary
guidelines for the triage of people on
state ADAP waiting lists.
For those who may die without immediate access to HIV
drugs, these drugs are as critical as
an organ transplant to those with advanced heart, kidney, liver, and
other diseases for whom organ
transplantation is the only hope for life. If we can develop an
equitable system for rationing donated
organs, then we can develop a more equitable system for rationing HIV
drugs for the medically
indigent when our government chooses not to provide funding for these
drugs. Medical Advocates is
therefore working with our partners in seeking funding for a workshop on
the establishment of these
guidelines.
Second, we need to have a mechanism for the private
sector to share the responsibility with
government to make HIV drugs accessible to those who will die without
access to these drugs.
Medical Advocates recommends the establishment of an ADAP foundation
whose mission would
be to:
• Provide emergency funding for people on state ADAP
waiting lists that are prioritized according to
proposed national guidelines with the agreement that such funding will
not affect their eligibility for
state ADAP benefits.
• Fund case management studies of people on state ADAP
waiting lists to determine eligibility for
other benefit sources.
• Provide temporary case management support on request
from understaffed state ADAP directors.
• Provide assistance and financial support as necessary
to enroll people on state ADAP waiting lists
into clinical trials.
Medical Advocates invites those who may be interested in
serving as a trustee of this proposed
foundation to submit their curriculum vitae via e-mail to
adapfoundation@medadvocates.org or by
direct mail to ADAP Foundation Organizing Committee, Medical Advocates
for Social Justice, 320
West Illinois Street, Ste 211, Chicago, IL 60610.
One final thought from the Koran: “If anyone
saves a person, it will be as if he has saved the whole of
humanity.” Let us make the commitment today to save the lives of
those on state ADAP waiting lists
as our first step in saving humanity from the growing plague of
indifference to the sanctity and value of
the lives of medically indigent Americans with HIV and other
life-threatening diseases.