Lyme Disease Patients Vent Frustration During HHS Panel

Alicia Ault

December 13, 2017

Individuals with Lyme disease expressed frustration and anger about what they called the scientific and medical community's lack of seriousness and compassion about their illness, and delivered a wish list of prevention, treatment, and research priorities to a new federal committee charged with taking on the government's response to tick-borne disease.

The US Department of Health and Human Services' (HHS) Tick-Borne Disease Working Group heard from a variety of clinicians, public health officials, and patients over the 2 days of its inaugural meeting in Washington today and yesterday. But it was the patients who made the biggest statement.

Rachel Nevitt compared those who deny the existence of chronic Lyme to Harvey Weinstein and others recently accused of sexual harassment, saying that they blame the victims, and "constantly discredit and delegitimize the Lyme specialists." She said that Centers for Disease Control and Prevention (CDC) officials and others in the medical establishment have tried to convince patients that "Lyme practitioners are quacks who have gone rogue off the guidelines and will endanger their patients with their treacherous protocols."

The advisory panel was created by the 21st Century Cures Act, at the urging of Senators Richard Blumenthal (D-CT) and Kirsten Gillibrand (D-NY), who say tick-borne diseases are a public health threat.

The CDC lists at least 16 known tick-borne diseases. Some 30,000 cases of Lyme disease alone are reported each year in the United States, "while studies suggest the actual number of people diagnosed with Lyme disease is more likely about 300,000," according to the agency.

Differing Opinions

The Lyme disease field has been rife with debate over whether it's possible to eradicate infection or if it can become chronic and lead to coinfections, neurologic conditions, and other ailments.

Working group committee chairman John N. Aucott, MD, said that the panel could not answer every question or end every debate. "Our job is very specific — to identify the gaps in what we know," and set a pathway forward, said Dr Aucott, associate professor, rheumatology, Johns Hopkins University School of Medicine, Baltimore, Maryland, and director of the Johns Hopkins Lyme Disease Clinical Research Center in Maryland.

The panel heard from representatives of the two diverging views in the clinical community — the International Lyme and Associated Diseases Society (ILADS) and the Infectious Diseases Society of America (IDSA). Samuel Shor, MD, FACP, associate clinical professor, George Washington University Health Care Sciences, Washington, DC, and president of ILADS, said that "there is no room for dogma" in the field.

Guidelines published by IDSA in 2006 refute the notion that Lyme is a chronic disease and the organization has cautioned against long-term use of antibiotics. In November, 28 patients filed a federal antitrust suit in Texas against IDSA; the Blue Cross and Blue Shield Association; Blue Cross and Blue Shield of Texas; Anthem, Inc; Aetna Inc; Cigna Corporation; Kaiser Permanente; United HealthCare Services, Inc; UnitedHealth Group; and several clinicians, claiming they were in league to deny coverage for chronic Lyme.

At the HHS panel meeting, IDSA President Paul Gisbert Auwaerter, MD, said, "What IDSA is committed to hews very closely to what I believe are the goals of this working group."

IDSA still does not see convincing evidence that long-term antibiotic therapy is effective, but the organization "will certainly stand by high quality evidence that helps inform both diagnosis and therapy," said Dr Auwaerter, clinical director of the division of infectious diseases, Johns Hopkins Medicine, Baltimore, Maryland.

The HHS committee aims to issue its first report in December 2018.

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