The National Comprehensive Cancer Network late last week announced that beginning in July it would reveal the financial ties to drug companies of oncologists who write its clinical practice guidelines. The change came in response to a Center for Science in the Public Interest campaign to force NCCN to open the books.
Historically, the NCCN has disclosed the names of companies with whom there are relationships, said Dr. William McGivney, CEO of the NCCN said in a press release. We now will apply that to individuals so that the public may better use the scientific, evaluative information that we provide.
Last Friday, the Center for Medicare and Medicaid Services gave oncologists the okay to begin using the NCCN compendium, which is drawn from its guidelines, to justify payment for the off-label use of anti-cancer drugs.
While the change in NCCN’s disclosure policy is a victory for transparency, it doesn’t change the underlying reality that many of the drug uses listed in the compendium do not have much evidence to back their inclusion. Cancer clinical trials often show that drugs like Avastin slow the amount of time before tumors begin growing again, but just as often there is no significant reduction in the time to death. Yet these trials are routinely used to justify that particular use in the NCCN and other compendia.
For the war on cancer to progress, the public needs better information about the outcomes from the use of these drugs in very sick and dying patients. CMS should consider requiring physicians to electronically report the outcomes of their chemotherapy regimens, especially when they involve the off-label use of drugs.
Independent epidemiologists and biostatisticians (perhaps working at a comparative effectiveness agency?) would then have a powerful database for analyzing the outcomes from the use of these drugs. While such analyses will not have the same predictive power as controlled clinical trials, it would give researchers and practicing oncologists valuable insights into what really works and what doesn’t when it comes to treating the more than 100 forms of the dread disease. Patients’ health, and the nation’s fiscal health, deserves nothing less.