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Ever since AIDS was first recognized as a grave new disease,
it has raised a host of complex social, ethical, economic, legal,
and political issues. The Foundation played an early and very
important role not only in educating the public and policy makers
about HIV/AIDS, but in calling on government to allocate the
resources needed to address the emerging epidemic and, through
expert testimony, in helping the courts protect the civil rights of
all those affected by HIV/AIDS. amfAR was a galvanizing force in
securing government support for critical HIV/AIDS research,
prevention education, and treatment programs, as well as in
promoting vigorous enforcement of protections against AIDS-related
discrimination.
Given the qualifications of the respected
scientists, physicians, and public health experts on its Board and
advisory committees, the Foundation soon established itself as a
trustworthy and highly regarded advocate of rational and
compassionate AIDS-related public policy. As such, amfAR was
instrumental in securing the passage of key federal legislation,
including the Hope Act of 1988, the Ryan White Comprehensive AIDS
Resources Emergency (CARE) Act of 1990, the Americans With
Disabilities Act of 1990, and the National Institutes of Health
(NIH) Revitalization Act of 1993, which strengthened NIH’s Office of
AIDS Research. In 1986, the Foundation was the first to press
Congress to establish an AIDS drug assistance program (ADAP) to help
people with HIV/AIDS cover the high cost of anti-HIV drugs. amfAR
has persevered in its support for this vital program, which
continues to operate with federal assistance to states under Title
II of the Ryan White CARE Act. ADAP increased from $30 million in
fiscal 1987 to $461 million in fiscal 1991 — for a cumulative total
of nearly $1 billion in federal support that has assisted many
thousands of Americans with HIV/AIDS.
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amfAR has been a pioneer in
supporting research, training, and policy development. This
involved providing funds in areas for which they were not
traditionally available or in areas that were politically
sensitive. They were early leaders and continue in that
role.
— James W. Curran, M.D., M.P.H., Dean of
Emory University’s Rollins School of Public Health, former
U.S. Assistant Surgeon General, and former director of the
CDC’s Division of HIV/AIDS Prevention |
| Today, the
staff of amfAR’s Sheldon W. Andelson Public Policy program, and the
highly qualified volunteers who support it through public statements
and invited testimony in Congress, continue the Foundation’s
advocacy efforts in support of sufficient and well-coordinated
funding for HIV/AIDS research, including vaccine research; effective
prevention strategies; expanded access to care and treatment; and
the protection of the human rights of all people affected by
HIV/AIDS. In these efforts, amfAR often works in coalition with
other national AIDS and health organizations to present a united
front speaking on behalf of people with HIV/AIDS, as well as those
with other disabilities and life-threatening diseases.
Public
policy activities have always constituted a relatively modest
portion of the Foundation’s overall program budget. But the results
of amfAR’s steadfast advocacy have been impressive, both in
leveraging increased government funding for research, prevention
education, and support services, and in protecting civil liberties
that benefit not only people with HIV/AIDS, but society as a
whole.
In the past two years, amfAR has pursued a number of
important public policy initiatives:
- Recognizing the need for Secretary
of Health and Human Services Donna Shalala to take a definitive
stand on the efficacy of needle exchange programs (NEPs), the
Foundation used the results of both amfAR-funded research and
other well-documented studies to push for a firm determination on
the scientific evidence to date. And, in April 1998, Secretary
Shalala announced that conclusive evidence shows that NEPs reduce
HIV transmission without increasing illegal drug use. However,
despite this determination, and broad support for the efficacy of
needle exchange among leading professional organizations and other
government advisors, Congress remained unwilling to lift its ban
on federal funding for NEPs. Today, the Foundation remains
actively involved in efforts to educate policy makers that needle
exchange is an essential component of an effective and
comprehensive national AIDS prevention strategy.
- During federal budget
negotiations, amfAR was one of a select group of organizations
invited to testify before the House of Representatives
Appropriations Committee. The Foundation’s testimony stressed both
the need for increased funding for the National Institutes of
Health and NIH’s Office of AIDS Research and the importance of
allocating federal funds to needle exchange programs. The
recommendation to strengthen the NIH as a whole reflected the
continued need for targeted and well-coordinated funding for
HIV/AIDS research, as well as the recognition that
basic-biomedical research benefits people with many diseases,
including those with HIV/AIDS.
- In June 1998, amfAR Chairman Dr.
Mathilde Krim, Chief Executive Officer Jerome Radwin, Board member
and Dean of Columbia University’s Mailman School of Public Health
Dr. Allan Rosenfield, and Jane Silver, amfAR’s Director of Public
Policy, met with Vice President Gore to discuss new developments
in AIDS research, the continued ban on federal funding for needle
exchange programs, and the importance of a unified and unambiguous
position statement from the Administration on the efficacy of
NEPs.
- In March 1998, the Foundation
signed an amicus brief in the case of Bragdon v. Abbott,
which helped win the landmark Supreme Court decision that
individuals with asymptomatic HIV infection are protected from
discrimination under the Americans With Disabilities Act (ADA).
Preventing discrimination against people with HIV is indeed key to
encouraging individuals to seek HIV testing and to avail
themselves of early treatment as appropriate.
- amfAR co-sponsored AIDSWatch, a
major annual HIV/AIDS education and advocacy event that brings
hundreds of constitu-ents to Washington, D.C., to urge their
elected officials to support increased federal funding for
essential AIDS-related programs.
- amfAR supported and took part in
the annual National AIDS Treatment Advocates Forum (NATAF), which
brings together AIDS advocates from across the country to develop
strategies related to HIV/AIDS research, treatment, and
access-to-care issues.
- The Foundation continues to offer
student internships that provide hands-on Capitol Hill experience
and help inform the next generation about the role they can play
in pressing government to implement effective HIV/AIDS-related and
other public health policy. Most recently, amfAR interns have
completed research on the Food and Drug Administration (FDA)
entitled “A Review of HIV/AIDS-Related Drugs under the FDA’s
Treatment IND Mechanism and Analysis of the Information Gathered
and Submitted to the FDA.”
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