CANCER LEADERSHIP COUNCIL
A PATIENT-CENTERED FORUM OF NATIONAL ADVOCACY ORGANIZATIONS
ADDRESSING PUBLIC POLICY ISSUES IN CANCER
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)
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
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."
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