The letter also quotes Dr. Willy Burgdorfer, formerly of the National Institutes of Health and discoverer of the Lyme spirochete: “The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people that have for the past 30 years produced the same thing— nothing.”
You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.
James H. Oliver is a well-known expert in ticks and their pathogens. He is a…
Advanced Laboratory Services Inc. (ALSI) has announced a new culture test for Lyme disease. It is commercially available in all states except California, New York and Florida, which have individual state licensing requirements that must be met before the test can be offered. Direct detection of bacteria through culture is considered the “gold standard” for diagnosis, but this method has not been commercially available for Lyme disease using previous culture methods. The new test is based on research conducted by Dr. Eva Sapi and colleagues, which CALDA helped fund. Results of the research published earlier this year demonstrated the improved culture method for Borrelia burgdorferi, the agent of Lyme disease, and the technique has recently been corroborated using human blood samples. Larger confirmatory studies of the test are now being pursued. Dr. Joseph Burrascano, a pioneer in the treatment of Lyme disease, consulted with ALSI to help make the test commercially available. A sensitive high-quality culture test would not only permit patients to be accurately diagnosed, but would lay to rest much of the controversy surrounding Lyme disease.
On February 17, 2009, President Obama signed into law a stimulus program that includes $1.1 billion for comparative effectiveness research. The Partnership to Improve Patient Care, a coalition of patient groups, physicians and pharmaceuticals, warned that the research might be inappropriately used to “limit treatment options for patients.” A health care e-list that I’m on has become an active war zone on this issue. (Full disclosure—I am a combatant.)
Recently, a group that writes guidelines asked for my input about the role of patients in the development of Evidence Based Medicine guidelines. With universal healthcare now ‘the law of the land’, treatment guidelines have become even more important. Preserving the integrity of the guideline development- process is what matters most. It is essential that patients play a role in the process that can so affect their lives. The question posed to me was why should those developing guidelines involve patients? My response follows.
Everyone is entitled to their own opinion. So why do we care about bias in medical guidelines? Because opinion should not dictate patient care. Think of the prostate cancer patient who sees the surgeon who recommends surgery, the radiologist who recommends radiation treatment, and the internist who recommends watchful waiting. Everyone knows that one’s position depends on where one sits. The surgeon may genuinely prefer surgery and when he recommends it to his patient, the patient realizes that he is, after all, talking with a surgeon and that surgeons are likely to favor surgery. He also knows that he can walk down the street a bit and talk with the radiologist and get his perspective. The point is that even though the patient is given conflicting advice, at the end of the day the decision is his. He chooses among treatment options and the physicians respect his decision. This is called autonomy—a recognition that patients are entitled to make choices among health care options.
Patient representation on the revised IDSA guideline panel: Is it real or token? The IDSA…
