https://www.lymedisease.org/who-represents-lyme-disease-patients/

LYMEPOLICYWONK: Who represents Lyme disease patients? Why it matters.
Tick-borne disease working group
Since December, the Lyme community has been waiting to learn who will be appointed as new members of the federal Tick-Borne Disease Working Group.

You may recall, the 14-member panel was first formed in 2017, in accordance with the provisions of the 21st Century Cures Act. The idea was to bring together government officials, assorted experts, and representatives of the patient community—so that a variety of viewpoints could be discussed. Their goal was to help set the course for government action regarding Lyme and other tick-borne diseases.

The group met a number of times in 2017 and 2018, and issued its first report to Congress at the end of 2018.

Now, the Working Group is set to be re-constituted, with another report to Congress due in 2020.

As we wait for the new panelists to be announced, we have many questions about who will be chosen to represent the Lyme community. Such as:

Will the interests of the Lyme community be effectively represented on the Working Group?
If patient interests are not sufficiently represented on the Working Group, then its processes will lack credibility and may harm the Lyme disease patient community.

How many patient representatives are appointed to the Working Group? There are seven public members on the Working Group under the legislative mandate. The last Working Group’s public members included three patient representatives: Wendy Adams of Bay Area Lyme Foundation, Pat Smith of the Lyme Disease Association, and Karen Vanderhoof-Forshner of the Lyme Disease Foundation. (Vanderhoof-Forshner was subsequently replaced by Robert Sabatino, of the New York-based Lyme Society, Inc.) How many patient reps will there be on this Working Group? Patients can have a hard time holding their own in a group of researchers. To a certain extent, effective representation is a numbers game. How outnumbered are the patients? Who is protecting their ability to have an influence?
Who can effectively represent patient interests? in a survey last year, we asked members of the Lyme disease community what they saw as the difference between a “token” patient and someone who could meaningfully represent patients with chronic Lyme disease. The chart below shows the results of that survey.

More at this link: https://www.lymedisease.org/who-represents-lyme-disease-patients/

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Many Blessings,
CrystalRiver