There is a fabulous article on the importance of patient choice in universal health care in the Wall Street Journal. The article, "Sorting Fact from Fiction," is by Groopman . I recommend that you take the time to read this important piece, which identifies many of the issues Lyme patients have been raising for some time.

I posted a comment to the article drawing the analogies to Lyme disease, which follows. You may want to weigh in on this important topic.

You can find the WSJ article here.

I posted a comment to the article online drawing the analogies to Lyme disease.  The full text of my comment is below.

I want to commend Jerome Groopman and Pamela Hartzband for applying razor-like precision to a typically muddy subject.  Any health care reform needs to carefully consider the issues raised in this article in order to “do it right”.  Patients need to have both a voice and a choice in their healthcare decisions.  Restrictive treatment guidelines can become de facto law and deny seriously ill patients access to care that could restore their quality of life.  Patients with Lyme disease have been denied access to health care treatment options by restrictive guidelines adopted by the Infectious Disease Society of America.  These guidelines leave patients without any treatment options when short term antibiotics fail to restore their health.  Treatment failures exceed 65% in patients with late Lyme disease.  The IDSA guidelines are treated as mandatory by insurers, who deny patients reimbursement for additional care.  They are also used by medical professional boards as a basis for unprofessional conduct actions against physicians who fail to comply.  

The IDSA Lyme treatment restrictions are so extreme that the Connecticut Attorney General launched an antitrust investigation regarding the IDSA guideline development process. He found that the guidelines were adopted by a panel populated by academic researchers and riddled with conflicts of interest.  The simple fact is that while panel members had extensive pharmaceutical interests in vaccines, diagnostic test kits, and insurance, no one representing the interests of patients was seated on the panel.  This panel found it easy to deny patients access to the only health care option available to restore their health and give them back their lives.  Whatever happens with health care reform, it is clear that physicians need to be permitted to exercise clinical judgment and provide individualized care. Patients need to be permitted to make vital decisions regarding their health care.

As part of its antitrust settlement with the CT AG, the IDSA held a hearing on July 30th with a new panel free from conflicts of interest.  The hearing gave patients and their treating physicians an opportunity to present scientific evidence that the previous panel had suppressed and ignored in making treatment recommendations. Over 1,600 pages of analysis and peer reviewed research studies were presented. Despite the weight of this evidence, IDSA president, Dr. Gershon steadfastly maintains that there is “no evidence” of persistent infection requiring additional treatment.

Unlike judicial actions, the IDSA controls the review process and excluded all physicians who treat chronic Lyme from the panel.   Still, the new panel has an opportunity to recognize that sick patients should be provided with treatment options.  Whether they will rise to the occasion and seize this opportunity or remain loyal to their organization’s dogmatic viewpoint despite patient suffering remains to be seen.  The new panel is expected to determine whether the Lyme guidelines need to be revised in view of the scientific evidence provided at the hearing by the end of the year.  Documentary and video archives of the testimony given at the hearing are available www.idsociety.org.

Lorraine Johnson, JD, MBA
Chief Executive Officer, California Lyme Disease Assn.