NatCapLyme’s Susan R. Green Presents Comments to the 13th Meeting of the Tick-Borne Disease Working Group
April 27, 2020
Susan R. Green, Esq, who serves as legislative counsel to the National Capital Lyme Disease Association, provided these public comments at the 13th meeting of the Tick-Borne Disease Working Group (TBDWG) on Monday, April 27, 2020.
(comments provided below)
“I ask this committee to unfetter the hands of these doctors who are on the front lines of battling Lyme and tick-borne diseases trying to find a treatment to help these very sick and abandoned patients.” Susan R. Green, Esq.
I am an attorney and also a Lyme survivor. In December 2017, I attended the first meeting of the tick-borne disease working group. I addressed this committee regarding the impediments to access of care. In my statement, I documented how, after contracting Lyme disease, I had been denied adequate treatment to address my condition.
I witnessed first-hand the persecution of physicians who were on the front lines battling Lyme disease. As a malpractice attorney, it was alarming to me to see a group of physicians being singled out and held to a standard of care that was narrowly determined by one group while ignoring other available standards. These physicians were held to a standard far stricter than their peers, a standard that was nearly unattainable. I began defending their licenses against spurious charges put forth by medical boards.
In 2017, I testified before the access to care committee 45 minutes, detailing the perils facing our doctors and the resulting lack of access to care for Lyme patients. Not a word was included in the report to congress.
We now face another pandemic whose virulent nature is so severe that it has an alarming death rate. Regretfully, what I complained about in 2017 has not changed.
Early on in this pandemic, the drugs Plaquenil and Zithromax, drugs commonly known to the Lyme community, were singled out for their efficacy in treating early disseminated COVID-19. The anecdotal reports and clinical evidence demonstrated in early infection were resoundingly positive. The CDC warned physicians of the need for trials to study Plaquenil and directed doctor not to prescribe it. They went onto extol the potential risks and dangers of the drug, despite the fact that this medication has been around for decades and has been dispensed like candy for the treatment of Rheumatoid Arthritis, Lupus and Babesia.
We witnessed governors, the CDC, NIH, doctors following the CDC directives; pharmacies and insurance companies agreeing to deny access to medications that were perhaps the one chance that patients had for a positive outcome.
I have stood before many a legislative body promoting laws to protect patients only to be told by those legislative bodies that it is not the province of the legislature to practice medicine directing doctors as to what they must do. When outsiders come between the relationship of physician and patient, they are engaging in the unauthorized practice of medicine. Only the physician sees the patient, takes a history, performs an examination, is aware of comorbidities and yet somehow your local pharmacist feels that they have more entitlement to dictate medical care than that trained physician.
The time of covering up interference in that sacrosanct physician-patient relationship is over! Lyme patients have suffered this interference for decades without recourse! Today however, the spotlight is on the COVID-19 virus. The world has seen how governmental bodies have conspired to interfere with their relationship with their physicians.
This is not what medicine was meant to be and is an affront to the privacy and the rights of every citizen. I asked you then and I appeal to you now, unfetter the hands of the physicians risking their lives and their licenses on the front line of battling Lyme and other pandemics and let them determine within the sanctity of the physician/patient relationship, the best course of treatment for a positive outcome so that we can prevent unnecessary deaths and suffering.
On May 30, 2018, President Trump signed into law a Right to Try bill authorizing patients with a potential terminal illness to utilize treatments that were in development phase. The FDA approved Plaquenil and Zithromax for trials in the treatment of COVID-19. Despite this law and despite the FDA approval, many have been prevented from access to the medication. Citing trials and risks, the CDC sat on physicians, discouraging them from utilizing the medication. This was disingenuous and caused countless lives to be lost.
In the long run, patients need to be informed! There must be good informed consent, but once that is done the patient/physician relationship must prevail, free from the interference of government and commercial interests. It is my extreme hope that my comments will finally make it into the report to congress so it can consider real change and patients will finally be able to rely on the wisdom and care of their physicians. In conclusion, I am sad to say that my warning of 2017 went largely unheeded! If anything, the COVID-19 pandemic demonstrates greater interference and abused rights of the American patient. I ask this committee to focus on access to care and to remove the impediment that patients face in obtaining the right to try medications and protocols that may be life-saving or life altering for them.
Susan R. Green
Legislative Counsel, NatCapLyme