Lull Letter

President’s Message: Consumers Need Our Support

by Robert J. Lull, MD –
Friday, August 2, 2002

NOTE: The author of the article below is now deceased. Reprinted with permission from San Francisco Medicine, the official publication of the San Francisco Medical Society. Original article.

I recently attended a meeting of a local Lyme Disease Association and learned some important lessons about the emerging health care consumer movement and trend toward disease-specific patient activism. I’d like to share the insights I gained from that meeting since it relates directly to the theme of this issue of San Francisco Medicine. These insights also apply to other ill-defined or rare diseases, such as chronic fatigue syndrome, fibromyalgia, gulf war syndrome, and a variety of illnesses possibly associated with environmental causes.

First, I was utterly dismayed at the stories told by individual patients of their disastrous encounters with many physicians who were uninformed about Lyme disease. [Jentri’s note: I was one of them.] Many doctors pontificated their incorrect views (such as the view that a negative ELISA test means the patient does not have Lyme disease) and missed early diagnoses of the disease when antibiotic treatment might have been most helpful. More distressing was the fact that most of these physicians never really listened to their patients. The patients were forced to see multiple physicians (often more than 10 doctors) before finding one who made the correct diagnosis. It was only after learning more about Lyme disease on their own, that the patients realized how ignorant most physicians are about the nuances of presenting symptoms, the difficulties in establishing a correct diagnosis and the controversies surrounding treatment duration.

The situation was far worse for patients who developed chronic Lyme disease. The cause of continued debilitating systemic symptoms and the role of long-term antibiotics to treat them is still hotly debated. The patients felt abandoned by the medical establishment, which seemed to ignore their testimony about antibiotic-related symptom improvement. So they organized an activist group, like the one I was visiting that day, to make sure their views and needs are not ignored. At national, state and local levels, Lyme Disease activist groups are a political force that demand attention. They also provide invaluable educational and informational resources to patients and their doctors.

Through such advocate organizations, patients have the opportunity to provide data that effectively contradicts the medical establishment view that chronic Lyme disease is not caused by ongoing spirochetal infection and therefore should not be treated with long term antibiotics. They can and do critique the few studies that form the basis of this contested view, which has been embraced by many insurers and HMO’s anxious to reduce the use of expensive antibiotics.

Because I can recall stories of treatment-resistant chronic tertiary syphilis-the classic spirochetal disease-I certainly feel physicians should err on the side of long-term antibiotic treatment until evidence to the contrary proves otherwise. This evidence should be sufficient to satisfy even advocacy groups. Doctors should listen to their Lyme disease patients and give them the benefit of the doubt regarding a clinical trial of long-term-antibiotics.

Unfortunately, physicians who have provided long-term antibiotic treatment have faced persecution in the form of adverse licensing action by state medical boards or dismissal from panels of health insurers and HMOs. It seems insurance companies are more interested in saving money than treating patients with a debilitating chronic disease. Such physician persecution in this unresolved treatment controversy is intolerable and deserves to be condemned by all physicians and organized medicine.

Lyme Disease patient advocacy is just one example of the modern health care consumer movement that is changing the face of medicine. When patients become consumers in this sense, the doctor/patient relationship improves. Organized medicine needs to reach out and participate with patient advocacy groups seeking to improve our health care system. Our patients as consumers will accept nothing less-nor should they.