Listen to Tick-borne Diseases Working Group on Dec. 11-12
Meetings 1 and 2 of the federal Tick-Borne Disease Working Group will be held in Washington, DC on December 11 and 12.
Members of the public may attend the meeting via webcast.
The TBD Working Group was established by the 21st Century Cures Act in 2016.
The law calls for appointments to include a diversity of viewpoints and specialties regarding Lyme disease. On November 22, the Department of Health and Human Services named 14 people to the panel.
One of them was Dr. Gary Wormser, chief architect of the highly controversial, widely despised 2006 IDSA Lyme guidelines. This set off howls of protest in the Lyme community. LymeDisease.org filed a letter objecting to Wormser’s appointment, based on his flagrant financial conflicts of interest, and then started a petition which gathered more than 10,000 signatures within four days.
HHS subsequently announced that Wormser had “declined the invitation” to serve on the group. His replacement is not expected to be named before the December meetings.
The first meeting starts at 12:30 pm ET (9:30 am PT) on Monday. Lorraine Johnson of LymeDisease.org is scheduled to address the panel at 2:50 ET (11:50 am PT). Click here for more scheduling information.
Please insist the subcommittee meetings be open to the public.
Being heard means nothing, if policy is made behind closed doors.
I pray this panel can start working towards conclusive efforts and spear a change in the way Lyme is minimilized for those that continue to suffer. I hope this panel can review more research and give more guidance to practitioners and patients that are still working towards irradicating this nasty disease.
I won’t be able to watch or listen, so I will be on the lookout for a recap! ?
Good work advocating in the political process!
Enjoyed hearing Lorraine’s presentation today. Great idea for LDo to have started a patient input/advocacy org like MyLymeData! The patient testimonies were great. Someone made a suggestion about adding a tick research scientist to the group. The woman who facilitated was great – I didn’t catch her name. She was an AIDS ACT-UP activist. I think we are at the same time parallel as when they started doing work in 1994 to get AIDS under control. She said it took them 3 years to start managing the epidemic. In our case, we also have a need to manage the environmental problem, so it’s an even bigger challenge to deal with.