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This article is from
Upfront
April 1999
Upfront
Unacceptable Delay
Six Thousand Men Will Die While NCI Stalls, NPCC Says
April 21, 1999. A two-month delay in a Senate meeting about prostate cancer scheduled six months ago for Thursday, April 22, 1999 was announced at the last minute this week. The meeting was supposed to hear from directors of the National Institutes of Health and the National Cancer Institute on progress in prostate cancer research so that money to close a research gap can be quickly allocated.
NCI's stalling breaks plans involving Dr. Andy Von Eschenbach of MD Anderson Cancer Center, Senator Robert Dole, Michael Milken testifying on behalf of CaP CURE, and Bill Schwartz, Vice-Chair of the National Prostate Cancer Coalition.
NPCC's president, Jay Hedlund, evidently upset about the delay, called it "unacceptable." Hedlund is urging prostate cancer patients and supporters to write, call, and E-mail the Senator who arranged for the hearing in the Senate, Arlen Specter (Republican, PA) Chairman of the Labor, HHS, and Education Appropriations Subcommittee:The Honorable Arlen Specter
United States Senate
Washington, DC 20510
(see Hedlund's letter below).
Thursday's meeting, now canceled, was supposed to hear from the Directors of the National Institutes of Health, Dr. Harold Varmus, and of the National Cancer Institute, Dr. Richard Klausner. They were expected to report their plans for prostate cancer research. Spending for prostrate cancer research, the US Congress found in October 1998, has not kept pace with scientific opportunities and the proportion of men who are afflicted with this disease.
The National Institutes of Health (NIH) has been "strongly urged to make prostate cancer a top priority when it hands out money for research." NPCC says. NIH has been "urged to consult closely with the research community, clinicians, patient advocacy groups, and the Congress to identify promising new avenues of basic and clinical research."
NIH was ordered in October 1998 to develop a report to be presented to the House and Senate Committees on Appropriations within six months outlining the professional judgment for prostate cancer research within the next five years. The Secretary and the Director were told last fall that by this month, April 1999, they must get themselves up to speed on prostate cancer and present a plan for funding and implementing the agency's prostate cancer research portfolio for fiscal years 1999 and 2000.
The April 22 meeting was expressly to receive NIH's report on these matters. The hearing was scheduled by the Senate Labor, HHS, and Education Appropriations Subcommittee. Dr. Harold Varmus and Dr. Richard Klausner knew that among those gathered to hear review and respond to their reports on plans for prostate cancer research would be Dr. Andy Von Eschenbach of MD Anderson Cancer Center, Senator Robert Dole, Michael Milken testifying on behalf of CaP CURE, and Bill Schwartz, Vice-Chair of the NPCC.
Tuesday, April 20, the hearing was canceled when Dr. Varmus of NIH told the subcommittee that he would not be prepared to submit his report until sometime in June. The NPCC immediately announced that "this delay in reporting and implementing a more aggressive strategy for prostate cancer research at NIH is unacceptable."
Jay Hedlund, president of NPCC, is asking prostate cancer patients and supporters to let NIH know that the prostate cancer community "will not sit idly by during delays in research." "Too many lives hang in the balance," he said Tuesday. "Please write or e-mail Dr. Varmus and tell him that you are unhappy with the delays in the NIH report, that NIH's research on prostate cancer has been inadequate for too long. Insist that NIH show a bold new commitment to patients by promptly completing a five-year research plan and by funding significant increases in clinical and translational research on prostate cancer beginning this year!"
On behalf of the National Prostate Cancer Coalition, Hedlund sent this letter to Dr. Varmus:Letter to Dr. Harold Varmus from Jay Hedlund, NPCC
April 20, 1999
Harold Varmus, M.D.
Director National Institutes of Health
Bethesda, MD 20892-0148
Dear Dr. Varmus:
I am writing to express the deep dismay and concern of the National Prostate Cancer Coalition at the failure of the National Institutes of Health to comply with the congressional directive to report a five-year prostate cancer research plan this month. We understand from the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education that you indicated you were not prepared to submit this report at the hearing scheduled for Thursday, April 22, and would not be prepared to do so until June.
Dr. Varmus, the history of prostate cancer research at the NIH has been characterized by too much neglect and indifference. In directing you to report, the Congress found last year that:
Spending for prostate cancer research over the years has not kept sufficient pace with the scientific opportunities and the proportion of the male population who are afflicted with this disease. This has resulted in significant gaps in scientific and clinical knowledge that contribute to the ongoing morbidity and mortality directly attributable to prostate cancer.
Given this finding by the Congress and the specific instruction to report by April, your failure to be prepared suggests a continued indifference to making prostate cancer a priority at NIH. The million men currently living with their diagnosis of prostate cancer and the 500 additional men diagnosed each new day and their families should be able to expect a committed effort from the NIH in the fight against prostate cancer. We strongly believe, as the Congress found, that effort to have been woefully insufficient in the past. Prostate cancer research has been underfunded and uncoordinated.
The prostate cancer community firmly believed that this report represented a real chance to change that path. Your delay seriously undermines our confidence that NIH is committed to waging an effective fight against prostate cancer.
During this two-month delay, more than 6,000 American men will die from prostate cancer. How do we explain to their families that the National Institutes of Health has chosen to delay making prostate cancer a more urgent priority?
Sincerely,
Jay H. Hedlund President & CEO
cc: Sen. Ted Stevens
Sen. Robert Byrd
Sen. Arlen Specter
Sen. Tom Harkin
Rep. C.W. Bill Young
Rep. John Porter
Rep. David Obey
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