A couple days ago, I received an email from a woman who had just been diagnosed with multiple sclerosis. She had seen two neurologists and both declared with extreme urgency that she needed to begin treatment with one of the Disease Modifying Therapies (DMTs) immediately. She doesn’t want to take a pharmaceutical drug and believes in alternative treatments. But she’s devastated, worried, confused, and unsure what to do and she wrote me to ask my perspective.
This scenario happens every day, all throughout the country and the world. People are being diagnosed with MS and frightened and pressured into starting immediately on a DMT. But isn’t it a good thing to get on the treatment? The drugs are very expensive, sure, but don’t they work to reduce the frequency and severity of flare-ups and slow the progression of the disease? Isn’t that why neurologists believe in them so strongly? Isn’t that why if you choose to not take them you are seen as no less than a heretic who clearly does not wish to be healthy?
Last year, after my mom died, in my grief and desperation I agreed to try one of the interferon drugs. I made the appointment via phone with the nurse to teach me how to inject, but then I got centered and clear and remembered what is right for me, and called to cancel. She responded as if I were canceling a malaria vaccine on my way into a swarm of African mosquitos. I received three separate phone calls from three different health professionals concerning my “alarming” decision to not move forward with the medication.
One would think that given this attitude, surely the drugs have been proven to work, and work really well. However, recent research illuminating the lack of effectiveness of the drugs doesn’t seem to have made its way into doctors’ practices, the MS Society, or the general mythology of the MS community.
A study published on July 26, 2011 in Neurology, the most widely read and highly-cited peer-reviewed neurology journal, published by the American Academy of Neurology, “found that taking an MS DMT for 10 years yielded small gains.”
“For example, untreated patients were estimated to go about 5 years without an attack,” said Neurology.org about the study. “If a person were taking one DMT, the treated person went about 6 years without an attack. Essentially, patients gained about 1 year without MS symptoms.”
However, what is the cost to a patient to gain this minor benefit – one extra year in six without symptoms?
The study found that “The treatment for MS is expensive. The cost of treatment over a 10-year period was estimated to be about $467,712 for people who were taking one DMT. This compares to about $220,340 for a person who was on no DMT for their MS.” Additionally, the study acknowledged that these drugs all come with significant side effects.
Ultimately, this study was deemed important because, “Based on their estimates, Dr. Noyes and colleagues said that the cost of DMTs for MS is much more expensive when compared to the costs of accepted treatments for other chronic illness. Since the cost of the drug was a large factor in the overall cost of medical treatment, Noyes proposed that if the cost of the drugs were lower, such as those in the United Kingdom, use of DMTs would be cost-effective. However, this would require a cost reduction of 67%.”
But what I find even more alarming to conclude from this well-respected study is that the doctors who are seeing and treating MS patients are either not keeping up with critical new research or are not integrating this information in their counsel. Neurologists are still advising MS patients with extreme urgency to begin disease modifying therapy immediately when they now have studies that show there is very little difference in how they will fare with or without the drugs.
It’s also essential to note that this study did not measure against how people fare who are not taking the drugs but who are altering their lifestyle with a healthier diet, exercise, meditation, emotional and spiritual work, etc. That’s the study I want to see.
When I get an email like this from a new MS patient who is confused and unsure about what to do and being pressured by their doctor, I get very upset. I am deeply disturbed by the dogma that exists in western medicine. According to Merriam-Webster, “dogma” is defined as “a prescribed doctrine proclaimed as unquestionably true by a particular group.” And that is exactly what’s happening here. Medicine is supposed to be a science. And as such, it’s supposed to update when new scientifically validated research becomes available.
Unfortunately, however, what’s supposed to happen and what actuallydoes happen are two very different things. It’s common knowledge that Big Pharma is making bank on MS drugs and that they have a stronghold on doctors’ education and practices. It’s also an unfortunate reality that doctors are simply people, like you and me, who become entrenched in their beliefs and have trouble updating.
If they’ve been prescribing DMT’s for years, in order for them to do something different, they’d have to first accept that they might have been prescribing something mostly ineffective all those years and then they’d have to acknowledge that they don’t currently have a better option to offer (at least not one that exists within the paradigm of conventional medicine). And few things are more uncomfortable for a doctor than not being able to do anything.
This would certainly be a severe ego hit for most doctors. And the lengths people go to avoid an ego hit cannot be underestimated.
But I believe that most doctors are good people who want to help. The thing is though, they’re just people. Not all-knowing gods. But that’s okay. Because we are fortunate to live in a time when studies like this are readily available to us online from the comfort of our own homes. And it is our job as the patient to be our own best doctor, which means we need to not rely on our doctors for all the answers. We need to do the research and come to our own conclusions, and let them know how we’d like to proceed, not vice versa.
What do you think? I’d love to hear your feedback on this topic. Share in the comments section below!