I talked to Steve Walker of the Abigail Alliance on the phone while I was still at ASCO, but then ran out of energy before I got this post up. So here it is, better late than never.
Also, this debate is just heating up, as far as I can tell. So those of you with a thing for lobbying and jumping into the public debate, please consider doing so on this issue: Giving cancer patients new drugs off-protocol (vs. forcing them to get new or experimental treatments ONLY in clinical trials).
My earlier post was about a session titled “Access to Investigational Drugs Off-Protocol: What Do We Owe Patients?” chaired by a great doctor I know from Seattle, Tony Back.
After the panel, Tony told me that ASCO had refused to let a representative of the Abigail Alliance speak as part of the panel. Tony said that he and others on the panel considered canceling the session (because all viewpoints were not represented), but decided to go ahead.
Here's that earlier post: Censorship Controversy at ASCO
"It's not about good science anymore," the Abigail Alliance's Steve Walker said, "it's about power and money."
Steve said that the doctor who originally was to chair this panel at ASCO dropped out, because ASCO decision makers refused to let a representative from the Abigail Alliance take part.
Steve asked, "How can me have a rational discussion about OUR issue without us being there?"
I e-mailed the ASCO PR folks at the same time that I e-mailed the Abigail Alliance, but they (ASCO folks) have not gotten back to me. No surprise there, I guess. Kind of cowardly, though ...
The Abigail Alliance's purpose (from its Web site):
The Abigail Alliance is dedicated to helping create wider access to developmental cancer drugs and other drugs for serious life-threatening illnesses. The Abigail Alliance is promoting creative ways of increasing expanded access and compassionate use programs. We are working to help promote creative ideas to get promising new drugs to the market sooner.
The Abigail Alliance is dedicated to helping better inform cancer patients, other patients, and their doctors about the web sites, clinicaltrials.gov and cancer.gov. These important web sites list clinical trials of developmental cancer drugs and other important drugs. We need pharmaceutical companies to advertise these vital web sites.
The alliance's tools include lawsuits, lobbying, and more.
The reason for the debate NOW is that the FDA is in the process of changing the rules for receiving drugs off-protocol. I understand that drug companies are pushing for tighter rules, in order to force patients to get these drugs only in clinical trials, so that they (drug companies) can get the data they need to get their drugs approved.
My position on THAT is that drug companies and others who conduct clinical trials need to improve their recruitment of cancer patients--including paying patients who take part in trials--rather than tightening up the use of cancer drugs off-protocol.
Go to: Abigail Alliance
@ Jeanne Sather 2008.
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