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Tick-Borne Disease Working Group, established by Congress as part of the 21st Century Cures Act gives patients a seat at the table to develop recommendations for the federal response to tick-borne disease prevention, treatment and research.
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Patients are coming together to have an impact and create change in Lyme disease policy.
The purpose of having balanced Lyme disease stories is to provide some human interest to incentivize Congress to fund Lyme disease research.
Members of the Tick-Borne Diseases Working Group share their feelings about what being a part of the process has meant to them.
LymeDisease.org’s Lorraine Johnson gave the following verbal comments during the Tick-Borne Disease Working Group’s June 21 meeting.
You don’t have to be an “anti-vaxxer” in order to raise questions about Lyme disease vaccines.
Patricia Smith, president of LDA, identifies lessons we can learn from the LYMErix Lyme disease vaccine story and pitfalls we can hopefully avoid in the future.
Over a period of six months, there were a number of personnel changes.
Among the most dramatic parts of the Tick-Borne Disease Working Group meeting were the public comments, including patient’s Lyme disease stories.
Alpha-gal “red meat” allergy develops after a person has been bitten by a lone star tick and becomes allergic to meat.
LymeDisease.org founder, Phyllis Mervine shares her story of growing up in Lyme-endemic areas, and then contracting Lyme disease in Mendocino County, California.
We need accurate data about ticks, the infections they carry, and the number of tick-borne disease cases in all parts of the country.
Lorraine Johnson, CEO of LymeDisease.org, shares data from the MyLymeData research project as well as her own personal experiences with Lyme disease.
The CDC’s recent increase in estimated Lyme disease cases per year means we also need to update how we view real-world economic costs for Lyme patients.
A summary of how minority opinions influenced the Tick-Borne Disease Working Groups views on vaccines, treatment, and diagnosising Lyme disease.
Dorothy Leland submitted the following comments to the Tick-Borne Disease Working Group in advance of the June 21, 2018, meeting.
TBDWG subcommittees have been working nearly around the clock to ensure high-integrity reports will be ready for submission to Congress later this year and will include the most comprehensive viewpoints possible.
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