ALEXANDRIA, VaAlthough physicians and other health
professionals are not taught how to create or pass legislation, it is
vital for each of us to be involved in the legislative
process, Edward L. Braud, MD, said at the 25th Annual Meeting
of the Association of Community Cancer Centers (ACCC).
Speaking at a plenary session, Dr. Braud drew on his own experience
as an activist in the Illinois Medical Oncology Society (IMOS) to
underline how laws drafted and passed by well-meaning people who lack
a knowledge of cancer treatment can unwittingly harm patient care.
Oncology professionals must therefore keep a sharp eye on issues that
might affect their ability to provide the highest quality care, said
Dr. Braud, a medical oncologist at the Springfield Clinic,
Founded in 1988-1989 by oncologists who had experienced difficulty
with Medicare, the IMOS became aware of a proposed bill that would
have forbidden off-label uses of medications without informed consent
for each use.
The legislator who introduced the bill was responding to an unethical
use of phenytoin (Dilantin) in pregnant women by some physicians
wanting to test its effects on fetuses. Although existing regulations
already forbade this improper experimentation, Dr. Braud pointed out,
the legislator introduced the bill with the intention of
strengthening patient protections.
When the IMOS learned of the bill, it had already passed the
legislature and was headed for the governors desk. With only 4
weeks to convince the governor to veto the bill, the Society
undertook its first major lobbying campaign. It succeeded in
persuading the governor to reject the measure, whereupon the state
House of Representatives unexpectedly overrode the veto.
We were scrambling, Dr. Braud recalled, until James L.
Wade III, MD, director of medical oncology, Decatur Memorial Hospital
Cancer Care Institute, and an activist in the IMOS, convinced his own
state senator that this was absolutely terrible
legislation, and that the veto should stand.
At that point, Dr. Braud realized the importance of involvement in
the legislative process because good ideas can make bad
bills, he said. IMOS took the offensive in 1991 and
got a bill passed assuring the right to off-label uses.
Ice Cream Socials?
More recently, the Society has worked for a bill requiring coverage
for routine patient costs of participation in clinical trials. In
1995, IMOS entertained legislators at an ice cream social and
talked enough to get hearings on the proposal, with the result
that the legislature finally understood our issue, he
said. The bill passed the state House, but has yet to pass the state
Senate. The pending bill does not provide money for data management
If we dont have clinical trials, we wont know how
best to treat cancer, Dr. Braud said, and those brave
patients willing to participate cannot do so if carriers dont pay.
His experience, however, has taught him the importance of the
oncology community working at the state level to improve the laws
affecting cancer care. It really does matter to legislators if
constituents call or visit to discuss issues, he said.