What Could the White House Do to Fight the Epidemic?

By Nancy Solomon

Michelle Roland, a medical student at the University of
California in Davis and an AIDS activist, was the only one who
noticed.

While reviewing research proposals for clinical trials for a
pre-cancerous cervical condition in HIV-positive women, she
discovered two similar studies under review by two separate
committees of the AIDS Clinical Trials Group (ACTG) at the
National Institutes of Health. Not only are the studies an
inefficient use of resources in the federal research program on
AIDS, but the duplication means that each study would compete for
enrollment, causing both studies to have low participation and
fail to prove anything, Roland says.

She has been raising this issue for almost a year, but has
not found enough willingness from the different committees of the
ACTG to coordinate research.

"That's a microcosm example of the problem -- but the
problem is much, much larger," Roland says. "If there isn't
sufficient coordination within the ACTG itself, we can't expect
coordination at any other level...I get calls from clinical
scientists at the NIH who ask me what the basic scientists are
doing down the hall."

She has tried to force the issue in one area of research,
Kaposi's sarcoma, and has walked into brick walls. "I've just
tried to get Sam Broder of the National Cancer Institute and Tony
Fauci of the National Institute for Allergy and Infectious
Diseases to sit down in the same room together and tackle the
tremendous challenge of planning and coordinating research," she
says.

Roland's criticism is backed by many researchers and leaders
in the fight against AIDS who say that research is undermined by
competition, the building of fiefdoms, and lack of coordination
and an overall strategy. Furthermore, AIDS prevention strategies
are ineffective because government health leaders refuse to talk
directly about sexual transmission of HIV. And funding for
direct services and health care continues to be slashed at both a
federal and local level.

Responsibility for this quagmire, they say, lies at the door
of the White House where first President Reagan and then
President Bush showed no interest in stopping the AIDS epidemic.
People with AIDS and those fighting the epidemic agree that the
Republican administrations over the 11 years of the epidemic have
failed to properly address AIDS.

With the possibility of a change at the White House come
January, AIDS TREATMENT NEWS recently asked community leaders,
researchers and activists what exactly they would want from a
president who cares about AIDS.

Proposed Infectious Disease Emergency Act of 1993

Terry Beswick of the Human Rights Campaign Fund, the largest
lobbying group representing the needs of gays, lesbians and
people with AIDS, has written a plan for a White House response
to the epidemic. He is calling for an Infectious Disease
Emergency Act of 1993 that would dismantle the present
bureaucracy and replace it with a coordinated system. That
system would have clear lines of authority and communication from
the president, and a national management plan that would
establish a definitive division of labor among all federal
agencies involved in AIDS work, eliminate duplication and
inefficiency, and ensure that necessary work is undertaken.

His plan, and the suggestions of many others, require that
AIDS be de-politicized to the extent that efforts to stop the
spread of HIV, care for the ill, and conduct research be driven
by principles of public health and science.

Beswick is circulating a 19-page draft of the plan for input
from people with AIDS, activists and community leaders. So far,
he has received support. (He can be reached at the Human Rights
Campaign Fund, 202/628-4160.

AIDS Czar

"We can't conceive of the power of the president because
we've never had it," says Paul Boneberg, director of Mobilization
Against AIDS in San Francisco. "A new president could get the
funding, he could double the NIH budget. It changes to what
level of a champion do you have versus what level of an
opponent."

Boneberg is among the many who are calling for an "AIDS
czar" -- a cabinet-level coordinator of the federal response to
AIDS who would have the ear of the president. The White House
must also commit to adequate funding for research and health care
and to legislative reforms that could change the Centers for
Disease Control restrictions on HIV education, the immigration
ban on people with HIV, and procedures of the Food and Drug
Administration.

Replacing Political Appointees

He also advocates replacing some of the existing AIDS
bureaucracy. "Everyone agrees that there are many people there
principally for their political views, not for their medical
expertise," Boneberg says.

Leading his list are the top three men in the federal health
administration: Secretary of Health and Human Services Louis
Sullivan, his undersecretary and right-hand man, James Mason, and
the director of the Centers for Disease Control, William Roper.
All three are Republican political appointees, and Mason and
Roper have connections to conservative Senator Orin Hatch, R-
Utah.

Mason bared his philosophy on AIDS in the March 1992 issue
of Medicine & Health, where he was quoted as saying "there are
certain areas which, when the goals of science collide with moral
and ethical judgement, science has to take a time out." Mason's
spokesman is quoted in the same article as saying "When you're
fighting a fire, you control it from the outside and let the
center burn. The same holds true for medicine."

Mason was promoted from his post as head of the Centers of
Disease Control during the 1980s, when the federal agency failed
to stop the spread of HIV.

A senior AIDS researcher, who spoke with unusual candor
about the federal research program under the condition of
anonymity, agrees with Boneberg's assessment.

"The White House should appoint a Secretary of Health who is
knowledgeable in science, not just a guy who has a medical
degree," he says.

"There's no central coordination at the NIH. God knows
there's no coordination at the Centers for Disease Control. We
don't have a national program," the AIDS researcher says.

"If you go out through the states you'll see there's no
consistency about AIDS prevention. In North Carolina, students
get prevention from English teachers. Most of them can't say the
word penis without blushing. To talk about condoms drives them
nuts. This ultimately comes back to the CDC and that ultimately
comes back to James Mason...He's going to make absolutely sure
that nobody talks dirty during the Bush Administration."

The AIDS bureaucracy grew without any overall plan, strategy
or structure, he says, and its history is marred by opportunism,
competition and careerism. "The whole process has been slowed
down by opportunists."

Leadership Is Paramount

Derek Hodel, who started the PWA Health Group, a New York
City buyers club, and now works with the AIDS Action Council in
Washington, says the question of leadership is paramount to
untangling the mess that has become the government's research
program on AIDS. "There is precious little in authority that
guides research across the institutes," he says. "A cabinet-
level post would send a signal that this is a serious issue."

He likened the need for coordination, strategy and
commitment to the way the White House runs the military. "The
air force, army and navy all work in collaboration," Hodel says.
"We need a triple track message: research, prevention and care."

That triple track was also discussed by Dr. Mervyn
Silverman, president of the American Foundation for AIDS
Research, who suggested an AIDS czar to coordinate a national
plan to fight the epidemic. That person should have the
expertise necessary to direct the research program as well as a
public health program willing to use explicit language to prevent
the further spread of HIV. "It will come from an administration
that is compassionate and understanding."

In a report released in July, the Treatment Activist Group,
a splinter group of ACT UP/New York, calls for a doubling of the
NIH budget, a line-item in the federal budget for AIDS research,
and the authority of the Office of AIDS Research to reallocate
funds across institute lines.

In a foreword to the report, Larry Kramer sums up TAG's
conclusions. "The AIDS plague is utterly and completely devoid
of leadership," Kramer writes.

"At the NIH, no one is at the center, nothing is
coordinated, no one is asking the life-saving (and money-saving)
questions: what is missing from our efforts, what is being
duplicated, why are we being forced into competition with our own
fellow institutes right here on our own campus, when budgets are
shrinking and shrinking?"

Comment

This article attempts to further the necessary debate about
what we would want from a White House that is not hostile to
people with AIDS. We felt that our readership could benefit from
this kind of discussion rather than a comparison between the
policies of George Bush versus Bill Clinton. We hope this
article will encourage thinking about what we need from
government. Asking only for more money will signal that we are
not doing our jobs: The federal response to the AIDS epidemic
must change in many significant ways in addition to an increase
in funding. We are more optimistic than at any time since the
emergence of HIV that a new administration in the White House
will address AIDS. The question is, will we be ready to harness
the power of the presidency to end this epidemic?