Phyllis Mervine’s public comment to TBD Working Group
Phyllis Mervine delivered the following remarks by telephone at the November 17 meeting of the Tick-Borne Disease Working Group.
Good morning. I am Phyllis Mervine, Founder and President of LymeDisease.org, the oldest Lyme patient advocacy nonprofit in the country.
I and other patients have submitted written and oral comments to the Working Group over the past few years. We have also served on subcommittees. I want to emphasize 5 points from these comments.
1. Pat Smith is one of my heroes, but no single person should have to carry the burden of representing the entire patient community on the Working Group. Please make sure more patients are represented next year. Patients deserve to have fair representation and strong voices on this group.
2. We also need more transparency in how Working Group members are picked. HHS ignored our petition of over 38 thousand signatures to remove Gene Shapiro. Dr. Shapiro has conflicts of interest and a long history of disrespectful conduct toward the Lyme community. He has served as an expert witness against ILADS doctors in medical board prosecutions and is a named defendant in a federal lawsuit that charges IDSA guidelines authors and insurance companies with conspiring to deny medical care to Lyme disease patients. Dr. Shapiro’s anti-patient bias on this Working Group has borne out our concerns about his participation. Patients deserve better.
3. Geographic limitations which hinder timely diagnosis should be removed. They make it more difficult for people in states the CDC labels “low endemic” to get diagnosed and treated. Northern California is a case in point. We’ve asked the CDC to revert to the county-based maps so high-risk counties within low-risk states can be identified more easily. We’ve asked the CDC to remove the geographic restrictions from their surveillance case definition to help patients to be diagnosed quickly and avoid chronic disease.
4. The CDC should not be taking sides between the IDSA and ILADS as they have been doing for years, in violation of federal guidelines about peer review. Most patients with chronic Lyme are treated by ILADS doctors because IDSA doesn’t provide any effective treatments for chronic Lyme. Let doctors know there are two standards of care.
5. Tick-borne disease educational materials developed for doctors need to present the spectrum of scientific and clinical perspectives on tick-borne diseases, not just IDSA. The CDC should not take partisan positions in professional turf wars that benefit the IDSA to the detriment of sick patients.
Thank you for your attention.
By the way, my friend and neighbor with ALS, who I told you about in January, and who was belatedly diagnosed with tick-borne diseases, died in July. He was 72.
Phyllis Mervine has advocated for the rights of Lyme patients for more than 30 years.