In 1993, the National Coalition for Cancer Survivorship (NCCS), eager to make sure the new debates on health-care reform included reimbursement for clinical trials, invited leaders of seven other patient-founded groups to meet and assess common goals. Drafting a set of reforms, attendees issued a Statement of Principles they wanted to see in all health-care reform legislation. The collaborative effort was a great success: clinical trial reimbursement language has been in every major health-care bill since 1993.

"None of us would have done this alone or come up with as good a document. Sharing, deliberating, and writing in an open process was a great experience," says Ellen Stovall, NCCS Executive Director. Participants decided to continue meeting to discuss major issues. The Cancer Leadership Council (CLC) was born.

Now a 29-member forum for health policy issues affecting patients with cancer, their caregivers, and families, the CLC has none of the bylaws, hierarchy, fundraising or other trappings of a formal organization. A group asking to "join" must meet simple criteria: a national presence and legal not-for-profit status. Participants pay their own fares to meetings, where the time is spent discussing issues.

Originally, much of the CLC's work was done by conference call. Now, monthly sessions are in the Washington offices of Bennett, Turner & Coleman, LLP, legal counsel to the CLC and legislative counsel to ASCO for many years. Attorney Elizabeth Goss, specialist in government relations, gives background information, explains regulatory processes, and describes all sides of an issue. Experts are often invited to the CLC meetings--recent sessions on stem cell research featured briefings by staff of the National Institutes of Health.

By sorting out differences of opinion and debating what steps to take, CLC representatives become better-informed advocates for key issues. When members unite behind a goal, results can be as gratifying as President Clinton's Executive Memorandum (June, 2000) mandating reimbursement for Medicare recipients enrolling in a clinical trial.

ASCO had been invited to sit in on the early meetings of the CLC. As the forum expanded to include non-patient groups, ASCO, the Association of American Cancer Institutes, the Oncology Nursing Society, and the American Society for Therapeutic Radiology and Oncology became official members. "Especially since the advent of managed care, it's clear that as a professional community, we're much better off going with patients to see legislators, who really want to hear what the patients say," explains Julie Taylor, ASCO Deputy Director of Public Policy & Practice. "It's been a process of educating those on Capitol Hill that coverage for clinical trials won't drive insurance costs way up. Now they understand the issue better. We get fewer questions from Republicans or Democrats through our joint effort. Working with the CLC has been a wonderful collaboration," she finds.

Ms. Stovall agrees, noting that at the time of diagnosis, no one is closer to a person with cancer than the medical oncologist. "If the CLC accomplished little else beyond better understanding and respect between us about what we need to do to make a cancer experience less painful, that would be a victory in itself," says Ms. Stovall, herself a cancer survivor.

Lately, Ms. Stovall has noticed programs at ASCO meetings that reflect issues raised at CLC forums (such as physician-patient communication). CLC meetings provide education for its 18 patient groups about challenges physicians are facing, including outpatient chemotherapy, privacy of medical records, and clinical trial reimbursement -- topics also addressed at ASCO educational events.

An exciting new project evolved because representatives of NCCS, ASCO, and a few other groups feared that the latest pain relief proposals are either too narrow or too broad for passage. They collectively thought 'we might as well write our own bill,' and Ms. Goss told them that they probably could. A subgroup is now working to develop a palliative care bill that crosses the life span of a patient with cancer.

Kim Calder has represented Cancer Care, a founding CLC member, and two other participants (National Alliance of Breast Cancer Organizations and Alliance for Lung Cancer Advocacy Support and Education). Ms. Calder finds that the CLC meetings remain lively. "Still very much a patients' forum, we comment on legislation or regulation from a patient's perspective. Given that the CLC has grown to 29 patient, research, and provider groups, that's a terrific accomplishment and ongoing challenge," she says.

Ms. Calder cites a need for patients' views--and supporting data--on a wide range of policy issues. "Beginning in the early '90s with principles for health-care reform, we have since honed our agenda and made our approach more effective and strategic." She continues, "Yet with too many underserved by the health-care system, I hope the group will promote access to quality care for everyone."

What is ahead for the CLC? "A new administration presents opportunity," Ms. Stovall notes tactfully. "We have to educate a whole new group of people. I think the CLC can have a positive impact on some issues because we ourselves are far more sophisticated and knowledgeable."

Carol Milano

Many of these articles appear on the publication's website, which are often password-protected or members-only. For your convenience, I've gathered them on my own website.