Lyme Policy Wonk
Lorraine Johnson, JD, MBA
(SHOULD BE EDITED)is the Chief Executive Officer of LymeDisease.org. She is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 40 peer-reviewed articles on this topic. She co-authored the Lyme disease guidelines of the International Lyme and Associated Diseases Society, published in 2014. She serves as a patient representative of the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI) and sits on both the Executive and Steering committees of PCORnet, a national patient-centered big-data project. She chairs PCORnet’s Patient Council. In addition, she is co-chair of the steering committee of Consumers United for Evidence-Based Healthcare, a nationwide coalition of consumer groups associated with the international Cochrane Collaboration and serves as a consumer peer reviewer for Cochrane evidence-based protocols and reviews. She has spoken before state legislatures, US and international governmental agencies, and at healthcare policy conferences throughout the world. Her blog focuses on medico-legal ethics and healthcare policy issues related to Lyme disease. Publications on Google Scholar; Publications on PubMed
2025
1Will glutathione treatments survive? Controversial BOP deadline looms.
For almost a year now, the California Board of Pharmacy (BOP) has been trying to impose severe restrictions on so-called “Category 1 sterile compounds,” much to the dismay of chronically ill patients and the state’s firefighters. Now, the deadline is getting closer, where the BOP must either pass the proposed
2025
LikeThe struggle for a normal life after Lyme disease
You might not think that a mini-series called “Girl at a Bar” is about Lyme disease. But it is. Or more specifically, it’s about a young woman trying to return to normalcy after Lyme disease stole five years of her life. “Girl at a Bar” is the work of Tracy
2025
LikeDavid vs. Goliath: Lyme patients and firefighters stall BOP decision again
California’s Board of Pharmacy (BOP) has been trying its darnedest to restrict access to IV glutathione and other alternative treatments. (See here for background on the issue.) Yet, vociferous opposition by chronic Lyme patients, the state’s firefighters, and others have turned this issue into the opposite of a “slam dunk”
2025
1While L.A. burns, BOP ponders limiting vital treatment for firefighters–and Lyme patients
On January 8, the California Board of Pharmacy (BOP) was discussing potential restrictions on Category One sterile compounds, including nebulized and IV glutathione. Glutathione is not only beneficial for Lyme disease patients but also proven to help firefighters recover from lung damage caused by their dangerous work. In a twist
2025
LikeJesse Colin Young, the voice of ’60s anthem “Get Together,” later sang about Lyme disease
Anyone who was around during the late 1960s is sure to remember these words: “Come on people now…Smile on your brother…Everybody get together…Try to love one another…Right now.” Jesse Colin Young and the Youngbloods were not the first to record the song “Get Together,” but their version became a huge
2025
LikeTen years strong: How MyLymeData works to transform Lyme research
A decade ago, LymeDisease.org introduced MyLymeData, now recognized as the largest patient-driven registry for Lyme disease in the United States. What is a patient registry? It’s a system that collects information about patients with the same medical condition, in order to figure out the best ways to improve their care.