ALEXANDRIA, Va—Although 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, Springfield, Illinois.
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(Drug information on 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 governor’s 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 in trials.
“If we don’t have clinical trials, we won’t know how best to treat cancer,” Dr. Braud said, “and those brave patients willing to participate cannot do so if carriers don’t 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.
