The AmFAR Newsletter Vol. 1, no. 4

Remembering Terry: The Ryan White (CARE) Act
(continued from page 1)

NIH had just begun leisurely to organize its AIDS Clinical Trials Group program;
and, other than Ted Kennedy, the only Senator who, at the time, seemed aware
of AIDS and willing to do something about it was Senator Lowell Weicker.
Fortunately, Terry was an investigative reporter by
training and experience. He knew how to reach
people, unearth information, and set a strategy.
He immediately went to work.
His first great success was passage of the AIDS
Research and Information (HOPE) Act of 1988,
the first comprehensive federal AIDS legislation,
which accelerated and expanded AIDS research
and established the first national AIDS-prevention
campaign. But Terry had long been concerned
about the plight of the rapidly growing number of
people who found themselves impoverished,
jobless, homeless, and often completely destitute
because of AIDS, because of the stigma attached
to it and the consequent discrimination, and
because of the high cost of AZT and other
treatments for their terrible disease. On AmFAR's
behalf, Terry had solicited support from New Yorkbased corporations for the establishment of a fund
to help local hospitals treat people with AIDS, to
develop model hospice-type residential facilities
for homeless patients, and to offer, on the basis of
need, subsidies to patients for the purchase of Ryan and his mother, Je,
drugs. Not surprisingly, the creation of such a at home in 1990. (Phot
private fund proved impossible. Ryan White Foundation
As soon as he arrived in Washington, Terry
proposed to Senator Kennedy that a federal program be developed to achieve these same purposes. But the Senator knew that the
idea of federally supported medical care and housing for people with AIDS would
not appeal to legislators. Terry, however, built his case on the rationale of disaster
relief, which is a federal obligation. He reasoned that if, through the Federal
Emergency Management Agency (FEMA), the federal government could offer
billions in immediate relief for damage to property, why couldn't it offer relief
for damage to human lives? Terry liked the fact that FEMA was capable of rapid

)

Washington Update: From the
Desk of the Public Policy Director
(continued from page 1)
research portfolio. Its report, now
known as the Levine Report, is the firstever blueprint for the federal AIDS
research initiative, and its recommendations include increased support for
investigator-initiated research, more
emphasis on vaccine development and
the need to preserve a strong Office of
AIDS research to provide leadership and
coordination to the entire NIH AIDS
research program.
" 1997 AIDS Research Appropriations
President Clinton released his full
FY 1997 budget request, which calls for
$12.4 billion for NIH, a 3.9% funding
increase. Over half of the increase
would be used for construction of a new
NIH clinical center. As a result, AIDS
research would receive $1.431 billion
(a 1.7% increase over FY 1996) through
a consolidated appropriation to the
OAR. The consolidated appropriation
allows the OAR to fulfill its responsibility to link its strategic planning
process to resource allocation.
* NIH Reauthorization
Maintaining the OAR's budget
authority will be AmFAR's focus in the
upcoming NIH reauthorization process.
The NIH operates under the authority
of the Public Health Service Act of
1944. Over the years, amendments to
this Act have been added authorizing
and/or mandating new programs and
initiatives. The OAR is an example of
such an initiative. Established in 1988
for the purpose of coordinating AIDS
research throughout all NIH institutes,
centers and divisions, the OAR's authority was strengthened during the 1993
reauthorization process. Reauthorization for the NIH is scheduled again for

this year. As the reauthorization process
moves through the House and Senate,
AmFAR will work closely with the
scientific community to maintain
Congressional support for the OAR's
fiscal authority.
* FDA Reform
Over the past year there has been
a growing debate in Congress regarding possible legislative reform of the
Food and Drug Administration. AmFAR
has a vital interest in this issue. It has
therefore become a founding and
leading member of the Patients' Coalition, a group of over 75 independent
organizations representing patients with
serious or life-threatening diseases.
These organizations are working
together for responsible FDA reform.
Speaking on behalf of AmFAR before
the House Commerce Subcommittee on
Health and the Environment, Dr. Ellen
Cooper, AmFAR's Vice President and
Director of its Department of Clinical
Research and Information, recently
expressed our serious concerns about
the House bills currently under consideration. We strongly opposes these
bills because they would 1) lower the
efficacy standard for the approval of
new drugs and new uses of approved
drugs; 2) allow the promotion and
dissemination of information by manufacturers of unapproved ("off-label")
uses of approved products; and 3) permit the use of third-party review of new
product applications at the discretion
of the product's industrial sponsor, thus
opening the door to conflicts of interest.
Dr. Cooper was invited to present
AmFAR's views at a number of conferences and workshops. She also outlined
alternative solutions that are in the best
interest of patients. AmFAR, along
with other Coalition representatives,
continues to meet with members of the
House Subcommittee and their staffs to
discuss these concerns.

responses and, initially, proposed that FEMA be the channel for AIDS relief.
In March 1987, Michael Iskowitz, a very bright, intense, young lawyer, joined
the staff of Senator Kennedy's committee for ten weeks, as a fellow. Terry and
Michael became friends and worked well together.
(Thanks to Terry's skills in persuasion, Michael's ten
weeks have become, as of today, nearly ten years,
during most of which he has served as Chief Counsel to
the Committee.)
The idea of using FEMA as a conduit for AIDS
relief funds was studied and debated. In the end, FEMA
did not appear to be an appropriate mechanism. The
only remaining option was to create a new AIDSspecific federal program. With Senator Kennedy's
approval, Terry decided to go for it. The road map was
literally drawn by Terry and Michael on the back of a
restaurant's placemat: it was to become the blueprint of
a future CARE act, whose central idea continued to be
"relief funding."
To begin, Terry organized a series of public
hearings for the Committee on Labor and Human
Resources in the District of Columbia, New York,
Boston, Los Angeles, and rural Georgia. Everywhere,
the situation was dire; the needs, acute. Senator Kennedy
became very concerned about the tragedy unfolding in
major urban areas; Senator Hatch, the ranking minority
nne White-Ginder, member, worried about the isolation of people with HIV/
courtesy of the AIDS in rural areas and, in all states, the need for
voluntary support efforts and available home care. (Their
concerns were later reflected in the CARE bill's draft as
Title I, aid to cities, and Title II, aid to states.)
With indomitable determination and much demographic, medical and economic data as ammunition, Terry set out to consult with many legislators in both
houses to formulate a Comprehensive AIDS Resources Emergency (CARE) bill
and to enlist their support. The Senate's bill was crafted largely by him, piece by
piece, to meet the various needs created by the AIDS health crisis. In the House,
Congressman Henry Waxman soon drafted a similar bill.
In March 1990, the Senate bill was introduced by its first sponsors, Senators
Kennedy and Hatch, and a sizable group of other senators. The arduous task of
recruiting as many sponsors as possible had fallen to Terry and Michael. But
Terry had a plan for that: he had invited Elizabeth Taylor to be on Capitol Hill for
visits and photographs on the very day the bill was to be introduced. Senators
were offered opportunities to have individual pictures taken with her, provided
they signed on as sponsors of the CARE bill. The number of sponsors increased
by 20, almost doubling on that day alone.
For help with the CARE bill, Terry called on other friends as well, notably
Ryan White and his mother, Jeanne, who had become his friends. As part of the
public policy activities started by the AIDS Medical Foundation, one of the two
precursors of AmFAR, some of us had defended the rights of Ryan White when
he was expelled from school in Kokomo, Indiana. Ryan had endeared himself to
all of us, but especially, to Terry. In 1989, Terry had introduced Ryan and Mrs.
White to Senator Kennedy. One year later, the day before the CARE bill's mark
up, Senator Kennedy heard that a very sick Ryan White had entered the hospital.
He spoke with Ryan on the phone that day, and when the bill passed unanimously
in committee, Ted Kennedy exclaimed, "This is for you, Ryan." The remark,
overheard by journalists, was reported in the press. Ryan White died a few days
later.

In order to preclude a filibuster, Senator Kennedy had requested that the
number of sponsors for the bill be increased to 60 before he brought it to the
floor for a vote. Terry could not bear thoughts of disappointing the Senator and
of failing on the last stretch of the long road. Yet at the time, he was also working
on the Americans with Disabilities (ADA) bill. And although many organizations
were, by now, helping with both bills, their activities needed his strategic leadership,
focus, and coordination. The resulting level of stress would have been unbearable
for anyone other than Terry. But by May 1990, he had the 60 sponsors for the
CARE bill.
At Terry's invitation, Jeanne White visited Congress in May 1990; her visit
helped get the bill on the Senate floor within the month. Her well-timed presence
in the visitors' gallery throughout the debate lent solemnity and poignancy to the
occasion. During the debate, at Terry's request, Senators Kennedy and Hatch
proposed that the bill bear Ryan White's name. When the vote was called, the
Ryan White Comprehensive AIDS Resources Emergency (CARE) Act passed by a
vote of 96/4; soon thereafter, it also passed in the House. When the Senate and
House bills were reconciled in conference, the final bill had two more Titles (III
and IV), which further broadened its reach. In August, President Bush signed it
into law.
This was an enormous victory for all people with HIV/AIDS. Thanks for it
are due to many people, particularly Senator Edward Kennedy, but, in my mind,
to none more than Terry Beirn. It was Terry who originated the idea, formulated
it in politically acceptable terms, gave it substance and justification, shepherded it
through countless negotiations, and carried it over many obstacles to shape
it into a viable legislative proposal. It was his profound sincerity, winning
enthusiasm, total commitment, and artful use of persuasion that mustered the
votes in Congress to make the Ryan White CARE Act the law of the land.
Thank you, Terry. I hope that we of the AIDS community will never forget
how much we owe you.
VVV
Mathilde Krim, Ph.D., is the Founding Co-Chair and Chairman of the Board of
AmFAR.

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