Open
By
Leonard Zwelling
https://www.nytimes.com/2021/11/06/opinion/lyme-disease-medicine.html?searchResultPosition=4
Ross Douthat is a prominent editorialist for The New York Times. He contracted Lyme Disease and now suffers from the effects of a disorder that some in medicine don’t accept—chronic Lyme Disease. The details of how the disorder is manifested clinically is less important than the fact that many of the symptoms are non-specific and it’s a brutally hard diagnosis to make and even harder to treat. In fact, as I understand it, there is no accepted treatment for this disorder and there are some in the medical establishment who doubt it exists.
When I was working on Capitol Hill in 2009, the office in which I worked, the Committee on Health, Education, Labor and Pensions (HELP), was lobbied by advocates for those with this disorder. They were assigned to lobby me, which immediately demonstrates that the office did not take this lobbying very seriously. I usually received those who lobbied the office who the staff did not find very important or thought the presentation would be too technical. On occasion, I was pressed into service when doctors visited the office as the staff thought that I could make them comfortable, and, more importantly, understand the message before summing it up in a one-page memo.
In one of his latest op-eds in The New York Times on November 7, Douthat discusses how his chronic disease has made him more open to, hmm-how can I say this—unconventional therapies. In his case it was a frequency generator called a Rife machine that claims to treat a wide variety of ailments based on the idea that the radio frequency waves generated by the machine through hand-held metal cylinders, can rid the body of chronic infection. Let me be the first to add that the Rife machine is not part of any medical school curriculum of which I am aware and is an untested way to treat real disease. But as Douthat points out, when you are suffering a debilitating and chronic illness the cure of which seems to be eluding traditional medicine, you become open to wild ideas.
Remember please that wild ideas gave us the anti-vaxx movement and QAnon and that in the age of the internet, wild ideas always find a welcome reception somewhere.
As someone who has been on both sides of the stethoscope, and, at times, suffering from ailments resistant to conventional treatment, I get the attraction of alternative medicine. This would come up from time to time when I was the vice president overseeing clinical research, because, as you can imagine in the oncology field, wild ideas are not in short supply and some of the wildest eventually prove to work. Thus, I have long been an advocate of alternative medicine, but not of alternative methods to prove its benefits.
I still believe that the randomized, double blind clinical trial which compares any new therapy with that which is currently accepted is the best way to sort out what works and what doesn’t and what the price of working in the form of toxicities is going to be.
Any oncologist knows that patients, especially ones whose cancer is not responding to conventional therapy, become desperate and will try anything. Our job when we meet such patients is to make sure they have had a good trial of conventional therapy and then offer them access to an applicable clinical research trial be it phase 1, 2, or 3. Our other job is to understand why a patient might be driven to try something unproven and to try to steer the patient to the best medicine, what my good friend Dr. Wendy Harpham describes when she says “clinical trials are healing medicine.”
Chronic illness, whether malignant or not, wears down the patient. If the patient is going to benefit the most, doctors have to be aware of the suffering and desperation and accept that unaccepted forms of treatment might be tried. Even better, read up on the treatment and see if it has any validity and then write the trial to test it.
I saw some really crazy ideas tested over my nine years in that VP job. Many of them were highly unconventional at the time and are now used commonly. I still remember hearing about Gleevec and wondering if a pill to cure chronic myelogenous leukemia could be for real. It was and it is.
Great clinical research takes on the seemingly untreatable with the unconventional. People thought the late, great J Freireich would kill people with combination chemotherapy. Then he cured with it. The best clinical researchers are highly open to new ideas. So are the desperate patients. When the interest of these two groups align, progress is bound to follow.
Stay open.
