TOUCHED BY LYME: Working group’s abrupt shift excludes Lyme patients
Tick-borne disease working group
Last week, on June 4, my eyes were glued to my computer screen. The occasion? The first meeting of the newly reconstituted federal Tick-Borne Disease Working Group (TBDWG). I’ll refer to this as the “2019 panel,” since that’s when its term began.
You’ll recall that the first incarnation of the TBDWG, which started its term in 2017, met eight times and delivered its report to Congress last December.
There is a world of difference between how the 2017 panel operated and where the 2019 panel is headed. The result? Lyme disease patients are being left out of the process—to their detriment.
Some background:
The Working Group was created by the 21st Century Cures Act, which included many different health-related provisions. The TBDWG was inserted into it at the behest of Lyme patient advocates.
The idea was to give Lyme patients, their treating doctors, and researchers toiling on their behalf a voice in the formation of government policy regarding Lyme disease.
The Department of Health and Human Services (HHS) set up the Working Group as follows. There would be three iterations of the panel, seated in 2017, 2019, and 2021, respectively. Each session would culminate in a report to Congress. The group would consist of seven “federal” members, chosen from government agencies, and seven “public” members, representing patients, clinicians and researchers. The panel would also set up subcommittees to help them, made up of experts, advocates, and patients.
Major differences between the 2017 and 2019 panels
The first time around, HHS announced the panelists about three weeks before the Working Group’s first meeting on Dec. 11, 2017. This gave Lyme patients time to learn about the panelists and, if they chose, arrange to come to the meeting in person.
In sharp contrast, HHS didn’t publicly announce the membership of the 2019 panel until late in the day on June 3, mere hours before the group’s first meeting on June 4.
Earlier, on May 15, despite no public acknowledgement from HHS, the Infectious Diseases Society of America (IDSA) made its own announcement. The organization proudly posted on its website that Dr. Eugene Shapiro, an IDSA member, would serve on the TBDWG. We asked HHS for confirmation, and they told us they had not yet selected the final panel.
Eugene Shapiro
Dr. Eugene Shapiro
With the meeting only weeks away, that assertion strained credulity. And then, on June 4, HHS swore Dr. Shapiro in as a member of the Working Group.
This is a critically important point, because Dr. Shapiro is much more than just a representative of the IDSA. In addition to financial conflicts of interest that should preclude him from serving on the Working Group, for years Dr. Shapiro has notoriously waged war on Lyme patients, their doctors, and advocacy groups. Putting him on the Working Group shows tremendous lack of respect for Lyme patients and their concerns. (More than 21,000 people have signed our petition to remove Shapiro from the TBDWG. Click here for more on why we oppose his appointment and to sign the petition.)
How did the IDSA know that Dr. Shapiro had been appointed? And why was that organization privy to non-public information? Why did HHS deny his appointment when asked and claim that no members had been selected? All of this reveals a staggering lack of transparency and process integrity—and begs the question: what else is HHS hiding?
More differences from last time
At that first meeting in 2017, you may recall the strong lineup of public commenters. I still remember stirring words from now-retired Air Force Colonel Nicole Malachowski and then-13-year-old Olivia Goodreau. There were many others.
Furthermore, at that 2017 meeting, two representatives of Lyme patient advocacy groups—Greg Skall of the National Capital Lyme Disease Association and Lorraine Johnson of LymeDisease.org, were invited to make presentations to the Working Group. Because Lorraine is on the west coast, she gave her remarks by telephone.
This is what engaging with patients looks like. You announce what you’re doing, you allow different stakeholders to give input, and you open up the phone lines for those who aren’t geographically close.
Things played out very differently in 2019. There were few public comments this time around, no advocacy groups were invited to give special presentations, and HHS did not allow telephone participation. Few patients attended this meeting in person.
The 2019 approach limited verbal comments to those who live close enough, and/or were healthy enough to leave the house, and/or could afford to travel from elsewhere to appear in person. Yes, anyone could submit written comments one week in advance (and I did), but in past meetings I have delivered spoken comments to the committee by telephone. Restricting access in this way pushes Lyme patients—many of whom are disabled—out of the process even more.
Here’s a picture of the audience at the opening meeting in 2017.
Here’s a picture of the audience at the opening meeting in 2019.
More at this link: https://www.lymedisease.org/tbdwg-excludes-lyme-patients/?fbclid=IwAR0QqcvdNhkzqgeDcj5-u40_ggSRrRSs9U8Gtu_doS_OyUiaWFQpuAjKSjw
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Dear RM Agents and Readers,
Remember when the towns people went after Dr. Frankenstein? Is that what it is going to take in this future world to be acknowledged when being ill with Lyme and Tick borne disease???
The pandemic is upon us and the silence is deafening--
Many Blessings,
CrystalRiver
