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March 1, 2000

  Contact: ASCO Communications Department: 703-299-1016


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 insurance coverage.

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 illnesses.

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 scans.

  • 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 Survivorship.

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 cancer community.

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."

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Related Testimony:

Maureen Lilly 2/29/00 remarks

Christina Carr's 2/29/00 testimony 

Amanda 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 year.


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