Sunday, March 13, 2011

Patients with Mysterious Diseases and Medical Scientists Clash

A little learning is a dangerous thing;
drink deep, or taste not the Pierian Spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again.


Alexander Pope (1688-1744), An Essay on Criticism, 1709

Making things more transparent can immediately turn consumers into better shoppers and make markets work better. One might think that such an initiative would receive nearly universal support – after all, who could be against openness and transparency?

Richard H. Thaler, "This Data Isn’t Dull: It Improves Lives” New York Times, March 13, 2011

In a perfect health reform world, empowered patients, armed with transparent information about their disease and its costs, sould control their health destinies. In their 2001 book, Crossing the Quality Chasm, the Institute of Medicine set forth a few of these “simple rules” for a 21st century health care system.

• Care is based on continuous health relationships.

• Care is customized according to patient needs and values.

• The patient is the source of control.

• Knowledge is shared and information flows freely.

• Decision making is evidence-based.

• Transparency is necessary.

• Needs are anticipated.

This is an attractive set of rules , but in the case of three controversial diseases – Chronic Fatigue Syndrome, Fibromyalia, and Chronic Lyme Disease – these rules have limits. The rules are not so simple. Patients may insist they have these diseases and that they are devastating their lives, but scientists may maintain that scant evidence exists that the diseases exist.

Here is how a March 12, 2011 Wall Street Journal piece, “Amid War on a Mysterious Disease, Patient Clash with Scientists,” tells the story.

“ Robert Miller was working as a coal miner in Utah in 1982 when he got the flu and ‘it didn't go away.’ Diagnosed with chronic fatigue syndrome in 1994, he has been living ever since with symptoms that include constant pain, an inability to concentrate and exhaustion so severe, he can't lift his arms.”

“Now, after a 2009 study claimed to find a link between chronic fatigue syndrome and a virus called XMRV, the 52-year-old has become a leader in patient efforts to push scientists to finally solve the mystery of his disease. He's attending scientific conferences, organized patient meetings with government officials and helped mastermind an advocacy campaign that sent daily emails to government agencies demanding action.”

“Stuart Le Grice is skeptical about XMRV's role in the disorder. As head of the National Cancer Institute's Center of Excellence in HIV/AIDS and cancer virology, he is sympathetic to Mr. Miller and other patients. But he insists that science can't be rushed. Desperate patients who want immediate answers risk diverting attention from essential research. ‘There's a danger of deflecting us from what we really want to do,’ Dr. Le Grice says.”

So, what if lack of evidence disrupts continuous health relationships? What if evidence does not support a patient’s needs and values? What if patient “control” runs counter to medical opinion? What if patients believe scientists are not sharing information or letting it flow freely? What if things don’t work out to the patient’s satisfaction?

Openness and transparency may not be sufficient in the real world if evidence for a disease state is scanty or does not exist. It is the a patient’s word against lack of data.

Many medical scientists say in this trio of diseases are psychological disorders, there are no specific tests, no biopsies, no radiological images to document their presence. Their symptoms are vague, involve multiple parts of the body, vary from patient to patient, and may be a pretext for gaining disability and other medical benefits. The controversy boils down to a contest between the subjective and the objective.

I do not pretend to be an arbiter in this dispute . It boils down to a dispute between disease sufferers, spurred on by proliferation of active advocacy groups on the Internet, mobilizing support for their point of view, and open combate at scientific meetings, and a skeptical scientific establishment.

It also raises deep questions. Is a little knowledge by patients and health consumers, largely gleaned from the Internet, a dangerous thing when pitted against scientific opinion? Does the so-called “information-asymmetry” between patients and physicians exist?

Does a set of vague symptoms justify therapeutic intervention? Pfizer thinks so, it developed Lyrica® to treat Fibromyalgia. A small number of practitioners think so. They are giving massive doses of antibiotics to patients who believe they have Chronic Lyme Disease. Chronic Fatigue Disease sufferers think so. They are collecting disability and openly challenging the medical scientific establishment.

2 comments:

Anonymous said...

Please read WSJ (today) "New Efforts to Simplify End-of-Care Wishes" "More than 75% of people will be unabale to make some or all of their own medical decisions at end of life...to reduce the amount of medical intervention (and costs)" Medicaid & Medicare shoudl require POLST forms (database), don't you think? National HealthCare Decisions Day NHDD.org Please inform your readers. Thanks

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