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CANCER COMMUNITY RALLIES BEHIND KEY PROVISION OF
PATIENTS’ BILL OF RIGHTS AT HILL BRIEFING
Patients, Physicians Urge Passage to Increase Access
to Cancer Clinical Trials
Cancer specialists and patients meeting on Capitol Hill yesterday
urged Congress to pass Patients’ Bill of Rights legislation that
would guarantee insurance coverage for routine patient care costs
associated with participating in cancer clinical trials. Speaking at
a standing-room-only policy briefing hosted by Rep. Nancy Johnson
(R-Conn.), they noted that a key provision of the legislation
currently pending in Congress would significantly improve cancer
care in the U.S., particularly if the provision is expanded to cover
FDA-approved as well as NIH-sponsored trials for cancer.
"Far too few patients in this country have access to cancer
clinical trials, which can offer patients their best and last hope
of effective therapy," said Lowell Schnipper, MD, of Beth Israel
Deaconess Medical Center in Boston, and a speaker at the briefing.
"Because of this, fewer trials are done, fewer important questions
are answered, and less progress in cancer care is made."
Dr. Schnipper noted that only 3% of cancer patients receive their
treatments in cancer clinical trials, although many more are
eligible and would be enrolled if not for existing restrictions on
The provision in the Patients’ Bill of Rights would require
private insurers to cover patient costs associated with
participating in NIH-sponsored cancer clinical trials. The
legislation passed in both Houses of Congress last fall and is
scheduled for conference committee reconciliation in early March.
The Senate bill would guarantee clinical trials coverage for
individuals with cancer, while the House bill would extend that
coverage to individuals with all serious and life-threatening
Three women whose lives have been directly affected by cancer
shared their personal experiences at the briefing:
- Christina Carr. "Clinical trials offer hope for better
treatments and better quality of life," said Christina Carr, who
attributes her recovery from Stage III-C ovarian cancer to
treatment she received in a clinical trial. "If clinical trials
are not supported, we destroy not only today’s medical care but
the future of research and effective drug therapies."
Ms. Carr recounted the story of a woman in St. Louis who has
amassed a $17,000 debt because her health insurance would not
cover her clinical trial therapy for late-stage ovarian cancer.
After a brief remission, the woman’s oncologist recommended
another clinical trial for her recurring cancer, but she was
forced to decline because her insurance company refused to pay
for routine costs such as laboratory tests and CAT
- Maureen Lilly. Ms. Lilly, whose 16-year-old daughter
Rebecca died in 1997 after a six-year battle with brain cancer,
said insurers agreed to cover her daughter’s clinical trial
therapy only after the family obtained a lawyer.
"Parents should not have to pursue such extremes to find
effective treatments for their children," she said. "It is hard
enough to make treatment decisions for your child and then be
able to live with those decisions. It is unfair to have to make
life and death decisions based on whether you can cover the
costs of the trials."
Ms. Lilly credited clinical trials for extending her
daughter’s life. "It was the clinical trials which offered hope
for a cure," she said. "With each clinical trial, we added
months if not years to Becca’s life."
- Amanda Adams. Ms. Adams said her clinical trial therapy
for Hodgkin’s disease not only saved her life, but allowed her to
resume her ice hockey career at Yale University after missing only
one season. "Treatment went so well, I didn’t need radiation
therapy as a follow-up to chemotherapy, which might have meant
losing up to 40% of my lung capacity and any real chance of
returning to my athletic career," she said. "The side-effects were
so minor and few, that other than hockey, I really did not miss a
beat of my freshman year."
The Patients’ Bill of Rights legislation before Congress would
cover routine patient care costs incurred in clinical trials. Such
costs include routine diagnostic tests, hospital charges and doctors
fees – the same costs that would be covered if a patient was
receiving standard therapy.
"Insurers must stop raising the false argument that treatments in
clinical trials are more expensive than standard care," said Ellen
Stovall, Executive Director of the National Coalition for Cancer
Frank Haluska, MD, PhD, of Massachusetts General Hospital in
Boston, agreed, noting that all available data show that routine
patient care costs are equivalent regardless of whether they are
incurred in a clinical trial or standard care.
Over the past year, support for insurance coverage for cancer
clinical trials has gained significant momentum. In addition to the
Patients’ Bill of Rights legislation, Congress is also considering a
bill, The Medicare Cancer Clinical Trials Coverage Act, which would
guarantee Medicare coverage of cancer clinical trials. A number of
states have also enacted measures to increase access to cancer
clinical trials, and in December a coalition of insurers in New
Jersey agreed to cover cancer clinical trials. Guaranteed insurance
coverage for cancer clinical trials is supported by the entire
Referring to this mounting momentum, Dr. Schnipper said, "We
haven’t seen an opportunity like this before, and I urge Congress
not to miss it."
# # #
Lilly 2/29/00 remarksChristina
Carr's 2/29/00 testimony
Adams 2/29/00 testimony
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The American Society of Clinical Oncology (ASCO) is the world’s
leading professional society representing physicians from 95
countries who treat people with cancer. ASCO’s 14,000 members set
the standard for patient care worldwide and lead the fight for more
effective cancer treatments, increased funding for clinical and
translational research, and, ultimately, cures for the myriad
different cancers that strike 1.2 million Americans every
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