U.S. Rep. Chris Gibson (R-NY) lauded the Infectious Diseases Society of America’s (IDSA) removal of Lyme disease treatment guidelines from the National Guideline Clearinghouse website on Monday and called for revised standards.
Gibson’s Tick-borne Disease Research Transparency and Accountability Act, H.R. 789, was included in the larger 21st Century Cures Act, H.R. 6, that was recently approved by the House of Representatives. The bill aims to expand federal programs that develop and approve treatments and cures for diseases.
“The IDSA’s Lyme treatment guidelines have been woefully inadequate in addressing the diagnosis and treatment of Lyme disease, chronic Lyme and related tick-borne illnesses plaguing families across New York,” Gibson said. “Dated treatment guidelines not only prolong patient suffering, they give health insurers a pass on providing the support these patients need for adequate care. Following years of legitimate public outcry, I am pleased the IDSA’s Lyme treatment guidelines have been removed from the NGC website.”
The Tick-borne Disease and Research Transparency and Accountability Act would establish an interagency working group to ensure coordination among federal agencies to make the most of research priorities. The working group would be comprised of federal and non-federal partners, including physicians specializing in Lyme disease.
“I am hopeful the IDSA will now undertake a complete revision of these standards, including substantive input from people who are living with and treating Lyme,” Gibson said. “I have always maintained that these revisions are necessary to improve patient care, bring relief to families coping with astronomical medical bills, and ultimately stop this public health scourge.”
The Secretary of Health and Human Services would also be required under Gibson’s bill to partner with the working group on a strategic plan that would be presented to Congress.