Joint press release from LymeDisease.org and Lyme Disease Association (LDA):

May 6, 2015

It’s been forty years since Lyme disease was first recognized in the US− when researchers studied an unusually large number of children diagnosed with juvenile rheumatoid arthritis around Lyme, CT. Their investigation was initiated through a phone call by a mother with sick children, Polly Murray, who noticed the anomaly in her neighborhood.

Unfortunately for 300,000 people who contract Lyme annually in the US, the last 25 years of research has not improved patient care.  Instead, a small group of researchers have built their careers around a biased view of the disease that brings us no closer to cure.  They have disregarded patients while pursuing dead- end research using tax payer funded grants.

These researchers, members of the Infectious Diseases Society of America (IDSA), have developed Lyme clinical practice guidelines that leave patients ill and without treatment options. When guidelines represent “de facto” law to insurers, government agencies, medical societies and hospitals, there are serious economic, legal and treatment consequences to patients.

According to Pat Smith, President, national non-profit Lyme Disease Association, Inc. (LDA), “Today, science is producing experimental drugs that can make incurable cancers disappear in 3 weeks’ time. Yet, obsolete lab tests that pick up less than 50 % of cases, make it difficult for Lyme patients to get diagnosed.  If lucky enough to be diagnosed, they have to fight for treatment. When IDSA protocols fail, they are denied further treatment. Physicians who try to help these patients may find themselves brought up on charges before medical boards. Parents who seek treatment for their sick children, may find their children torn from their homes by state agencies.  It’s a nightmare of unimaginable proportions.” http://www.lymediseaseassociation.org/index.php/lda-news-a-updates/1371-lyme-community-unites-to-protect-patient-rights

IDSA recently announced a public comment period on updating its 2006 restrictive Lyme guidelines, which were the subject of an antitrust investigation by the CT Attorney General, because they foreclosed treatment options.  Patients and treating physicians have again been excluded from the guidelines’ panel. The LDA, LymeDisease.org (LDo), and scores of organizations nationwide, examined IDSA’s plan and determined the process is devised to maintain the status quo by including on the panel only like-minded members and excluding those who might disagree. This process violates the 2011 Institute of Medicine (IOM) guidelines’ report standards, which state that guideline panels should include clinicians and populations affected in the process. This includes physicians who treat Lyme as well as patients with Lyme —who are the most affected by the guidelines.

The IDSA panel does not include any Lyme patients.  Instead, it includes a single “consumer” who has stated she has never had Lyme and knows nothing about it. Patients are outraged that the panel does not include a representative who understands the devastating impact these guidelines have on Lyme patients and their families.

According to Lorraine Johnson, JD, Chief Executive Officer of LDo, “The IDSA guidelines process excludes the very people who should matter the most—the patients. The goal of guidelines should be to help sick people get well. For too many, these guidelines do the opposite. They abandon seriously ill people to lives of pain and disability. They deny them a diagnosis and they deny them treatment.”

An LDo patient survey launched in the comment period drew over 6,000 patient responses in one month. A recurrent theme was how patient lives were being ruined by the guidelines’ failure to provide early diagnosis, the high treatment failure rates and the lack of treatment options. https://lymedisease.org/activism/idsa-guidelines-survey-results.html

The IDSA extended its initial comment period, but refused to permit the LDA/LDo to submit additional online comments prior to the new deadline, showing clear distain for the patient voice.

We have written to the US House of Representatives Lyme Caucus and the Energy & Commerce Committee to consider our many, significant and documented concerns and asked the latter to hold a hearing on these issues that affect the health of millions of people worldwide and their ability to keep their jobs, attend school, keep their homes and maintain the integrity of their families.