NIH and CDC should dismantle barriers to proper Lyme treatment
Mira Shapiro gave the following public comment at the November 21 meeting of the federal Tick-Borne Disease Working Group.
Thank you for the opportunity to speak with you today. My name is Mira Shapiro. I am a chronic Lyme disease patient, biostatistician, and real world data specialist.
While attending ILADS as a patient several years ago, I was fortunate to learn about Lyme Disease.org and their MyLymeData patient registry. Since that time I have been working on projects using MyLymeData and have seen from our research results that I am not alone in my struggle with chronic Lyme disease.
Like many other patients, it took me more than 20 years to get an accurate diagnosis of my Lyme disease and co-infections. In that time, when I was misdiagnosed and dismissed by physicians, my symptoms escalated and interfered with my career progression, my family life, and overall quality of life.
As a scientist, I persisted and was eventually properly diagnosed. Had I not been able to do so, since my condition progressed to central nervous system involvement, I firmly believe I would be in a wheelchair or might not have survived.
I also had the resources for the cost for treatment that was not covered by insurance. I don’t consider myself well, but manage my condition as best I can. I wish I had been diagnosed at an earlier stage and avoided this lifelong debilitating chronic condition.
I consider myself lucky–not every Lyme patient has the knowledge or financial resources to fight this battle. You don’t have to look too far to read countless accounts of individuals who have been misdiagnosed with other conditions, and struggle to get an accurate diagnosis and the care they need for Lyme disease and other tick borne co-infections.
Although there are in excess of 400,000 new cases of Lyme disease annually, and most likely more, it is a disadvantaged disease from a research perspective. The last NIH treatment trials were conducted more than 25 years ago. Patients can’t wait for research to catch up.
The IDSA has essentially abandoned patients with chronic Lyme disease. Patients are disabled with chronic Lyme disease and many of them can’t work. It is unreasonable to interfere with patients’ ability to get treatment or leave them with no treatment options.
We need to recognize the fact that some patients are being treated by educated and dedicated Lyme Literate MDs. The NIH and CDC should not be putting up obstacles that interfere with patients getting the treatment and support they need to improve their health and quality of life. It’s about time we use all the scientific and medical resources available to put patients first and help them fight this battle.
Watch a video of Mira delivering her remarks.