Patient Support and Advocacy
Cancer Politics and Economics

Author’s Note:
Early in my fact-finding days for this novel, I spoke with a woman named Deb Sandry from Iowa. I needed to hear what stereotactic brain surgery was like and she told me, in unflinching detail. She described herself as a ‘very verbal’ patient who learned to advocate for herself – 'if I didn’t, I’d be dead.' She also stressed the importance to her emotional and mental health of the Quad Cities Gilda’s Club.

It was early in 2002 that Debbie called to ask how the book was coming along. I heard a wistfulness in her voice, and an urgency. She died that March. I never got to meet her, but I did tune into her message about the vital role of patient support and advocacy in the lives of cancer patients.

Gilda’s Club provides home-like meeting places for the emotional and social support of cancer patients, their families and friends.

Gilda’s Club under formation in Madison, Wisconsin
Gilda’s Club in the Quad Cities (Davenport, Iowa)
Gilda’s Club Worldwide: search here for a Gilda’s closest to you

The Center for Science in the Public Interest (CSPI)

One goal of this distinguished organization is to ensure that science and technology are used for the public good. Read the mission behind their Integrity in Science Project, and make regular visits to the News pages. A late February '07 visit, for example, yielded these two articles:

• FDA Fails to Find Advisors Without Industry Ties
• Positive Results More Likely in Breast Cancer Trials Involving Drugmakers

Commonweal Cancer Help Program

An integrated program of healing via week-long retreats sponsored by this California health and environmental research institute. Commonweal also provides information on retreats in other locations. You will find exceptional links at this site, and the classic book Choices in Healing, written by Commonweal founder Michael Learner and provided in its entirety.

Steve Dunn’s CancerGuide
A wealth of technical help and a robust attitude. Dunn learned from personal experience that information can save lives. The section on clinical trials alone is worth a visit. “Information with a point of view,” Dunn wrote, “not information sanitized by committee.”

The Annie Appleseed Project

A complementary alternative medicine site for cancer patients, offering an encyclopedia of options.

National Breast Cancer Coalition (NBCC)

This activist organizaation, though not open to developing a position paper on ex vivo (per personal communication with the author), does offer exacting and thorough guidance to patients, and advocacy on their behalf. Their fact sheets and position papers are good starting points.

State of the Evidence on Breast Cancer

A woman's lifetime risk of breast cancer in 1940 was 1 in 22. In 2004, it was 1 in 7. For a responsible, thorough look at the evidence why, check out this report on the connection between the environment and breast cancer.

The Center for Patient Partnerships
Based at the University of Wisconsin-Madison, the Center focuses on patient advocacy, education of future health-care professionals, and patient-centered research.

Burzynski Clinic

Dr. Stanislaw Burzynski is not a quack, and it is debatable whether antineoplastons should even be classified as alternative medicine. This non-toxic therapy appears particularly effective for certain brain cancers. Much can be learned on the clinic website, and on another maintained by his grateful patients. For an eye-opening history of the FDA vs Burzynski, buy or borrow this book: The Burzynski Breakthrough, by Thomas Elias.

Author’s note:
Should people gather the impression – from perusing the following links or from other portions of this website – that A Test of Survival is filled with oncology-bashing scenes, they would be quite wrong. I can’t imagine a tougher medical specialty, I’ve witnessed excellent oncologists at work (my mother had two of that category), and I respect the skill, character, and endurance required to help people get well or to help them die.

'I like looking for funny things'

Parallels to the ex vivo controversy can be found in the story of two persistent Australian scientists who went to extraordinary measures to prove that ulcers are caused by bacteria and do not require lifetime injestion of expensive anti-acid drugs, however lucrative that industry may be to those prescribing and making the drugs. In 2005, Barry Marshall and Robin Warren were awarded the Nobel Prize. In his acceptance speech, Marshall alluded to the resistance he and Warren encountered via this quote from historian Daniel Boorstein: 'The greatest obstacle to knowledge is not ignorance; it is the illusion of knowledge.'

Fortune Magazine article
The March 22, 2004 issue of Fortune ran a riveting investigative article written by the magazine’s executive editor, Clifton Leaf. 'Why We’re Losing the War on Cancer (And How to Win It )' explores in detail a dysfunctional cancer culture. (Leaf is writing a book of the same name under contract with Alfred A Knopf, part of Random House.) How wonderful that this original article is now available for anyone to read on-line. At the very least, read Part 3: ‘The Models of Cancer Stink.’

Books by Samuel S. Epstein, M.D.
Dr. Epstein is a heavily credentialed and blessedly persistent critic of the cancer industry. His latest book is entitled Cancer-Gate: How to Win the Losing Cancer War. The second edition of his previous book, entitled The Politics of Cancer Revisited, is a stunning, exhaustive expose of the forces Dr. Epstein deems responsible for feeding instead of fighting the cancer epidemic.

The Five Horsemen of the Cancer Apocalypse

In this interview, activist-educator Judy Brady dissects and defines the components of the powerful cancer establishment. 'The only way I see that we can fight back is by expositing the establishment's lies.'

Dr. Marcia Angell on drug company practices

For knowledgable insights that move well beyond fiction, read this review of John Le Carre's excellent novel, The Constant Gardener, written by Marcia Angell, Harvard Medical School lecturer and the former editor of The New England Journal of Medicine. “This system (in third-world countries) makes a mockery of the notion of informed consent,” Angell writes.

Then dip into this Mother Jones interview with Dr. Angell about her own book, The Truth About the Drug Companies: How They Deceive Us and What to Do About It. 'Around 75% of new drugs approved by the FDA are me-too drugs. They can be less effective than current drugs, but as long as they're more effective than a placebo, they can get the regulatory green light.'

Dr. Jerome Groopman on the 30-year cancer war

'The need to justify the bureaucracy meant that scores of clinical trials of relatively ineffective but toxic drugs were conducted with little benefit to the patient or to science.'

Toxic Sludge Is Good For You

Where is all this cancer coming from, and who is the enemy, anyway? Hard-hitting answers in two books by John Stauber and Sheldon Rampton of the Center for Media and Democracy.

• Toxic Sludge is Good for You: Lies, Damn Lies and the PublicRelations Industry
• Trust Us, We're Experts: How Industry Manipulates Science and Gambles With Your Future

Dr. Vernon Coleman Health Letter

Here is a plainspoken, information-rich viewpoint on ‘The Real Cause of Cancer – And the Solution’, by Dr. Vernon Coleman of the U.K. 'The most repressive, most prejudiced and most obscenely intolerant branch of the international medical industry is undoubtedly that part of it which claims to deal with cancer.'

Conflicted Science

On this Greenaction website, activist-writer Judy Brady reports on a conference of scientists who explored the question: to what extent has the commercialization of science undermined science itself?

SavvyPatients Integrative Medicine on the Internet
An exhaustive site with scores of resource links on the topic of politics in cancer. The most recent are often grouped near the end of each section.