January 27th 1998 update: As predicted in this article, President Clinton in his State of the Union Address called for "the largest increase in history" in the budgets of the National Institutes of Health and the National Cancer Institute.

Medical schools and doctors are discovering patients as allies for raising money for research. Are they looking at them as true research partners, who may come up with their own feisty demands? Or do they see patients as compliant experimental subjects?
      Remember the children back in the 1950's who were asked to eat radioactive oatmeal? Orphan boys outside of Boston, viewed as retarded. MIT, working for Quaker, organized a "Science Club" for those boys. The boys would do experiments. Eat radioactive oats. Quaker wanted to track the passage of oatmeal through the gut to prove it went the way of other breakfast cereals. Forty years on and MIT and Quaker are in court for violation of civil rights. Million dollar class-action-suit damages.
      A system of alliances among science, medicine, hi-tech and commerce is turning prostate cancer into a treatable disease and will, we believe, find a cure for it. Currently these huge interest groups are competing for pools of patients. Patients are being headhunted. We want to see alliances in which patients are true partners. Otherwise many patients in the coming decade will become roadkill on the Medical Pike.
Lobby or "Science Club"?
Robert Pear, reporting in The New York Times ("Medical Research to Get More Money from Government" Jan 3, 1998), says patients' groups, doctors, and medical schools are forming a coalition to lobby for a big increase (100%) in the budget of the National Institutes of Health (NIH).
      How much heft do patients in this lobby have? Is the lobby needed for the stated purpose? Is it good for patients? Desperate as we are for more and better cancer research, let's keep focused on the needs of cancer patients themselves.
      The timing of this effort on behalf of NIH seems off. As Pear reports in the Times, NIH is about to get a substantial budget increase. The National Cancer Institute has asked Congress for $3.19 billion for the next fiscal year, up from $2.55 billion this year. NCI plans 13 more research and treatment centers around the USA (up from 57 to 70). It has asked the Government to authorize fees for five times the number of cancer patients participating in clinical trials. The surprise is, NCI will probably get most of what it asks for.
Government eager to invest
According to Pear's upbeat report, this month President Clinton will ask for "a substantial increase in Federal spending on biomedical research." Members from both parties say they will almost certainly vote for more than the President requests. They will do so because voters want it and biodmedical investment is good for the American economy. Even hold-out Republican representatives (Pear says) now appreciate biomedical research as "an engine of economic growth."
      Senators actively pushing for huge increases in NIH funding include Democrats Tom Harkin (Iowa) and Edward Kennedy (Mass.) and Republicans John Porter (Illinois), Arlen Specter (Pennsylvania), Connie Mack (Florida) and Alfonse D'Amato (New York).
      NIH has another friend in Vice President Al Gore. He and Donna Shalala, Secretary of Health and Human Services, are asking for a billion dollar increase for NIH in the year beginning next October. And President Clinton has already agreed.
Research Needs Bodies
All of which is wonderful news. Why, though, are doctors and medical schools reaching out at this moment to form a coalition with patient groups? Can it be they are looking for what clinical trial patients call bodies?
      This far into the AIDs epidemic and on the brink of investments (and payoffs) in cancer research, candor evaporates. In the past, it was acknowledged that even desperate patients had reason to pause before entering clinical trials. The Phase I trial, which tests for toxicity and dosage, is worse than a crapshoot. Hardly anyone participating benefits (estimates range around 3% to 5%). Many patients get sicker than if they'd stayed away.
      If five times as many trials are ready to roll, we ought to be talking about redesigning trials to make them less savagely wasteful of patients. Instead we are hearing about villainous HMO's keeping desperate patients away. The desperation is all too real, but it is not driving people into as many Phase I trials as researchers and companies want to run.
Shortage of Trial Patients
Shortage of trial patients concerns NIH director Dr. Richard Klausner. Three years ago Dr. Klausner said research was slow because of the sheer complexity of cancer.Today Dr. Klausner says knowledge of the fundamentals of cancer is "exploding." The obstacle, he says, is this: HMOs don't want to pay for routine care of patients in clinical trials.
      About 300,000 cancer patients a year participate in trials. If NIH boosts this fivefold for the next 5 years, it will need 7 million cancer patients enrolled. Dr. Klausner says the point is to make sure everyone who wants to participate can. Worthy as this goal is, at a time when pressures from AIDs and an outpouring of new drugs is spawning commercial trial facilities, it sounds simplistic.
      As a money-raising theme song, the blaming of HMOs carries some fudged notes. True, many patients need treatments they can't afford. True, some are desperate for experimental treatments their HMO won't pay for. These are not the patients NIH and the oncology industry are scouting, though. At Phase I, the need is for experimental human animals. Why not be frank about it?
      NIH's position is laid out in Treatment of Last Resort. A careful discussion is at Gay Men's Health Network. Our first question here at PSA Rising, based on a review of those articles and interviews with survivors in trials, is this: Under what conditions will patients feel safe in asking to contribute more input into the clinical trial process?
      We mean more than token oversight and input. Right now, patients who are about to spend months taking grueling experimental therapies may never be allowed to read the top-secret trial protocol. (A protocol is not the document patients are asked to read and sign, namely the Informed Consent sheet.) In our opinion, this and everything that depends upon it will not change unless and until patients get together on their own turf and organize on their own behalf.