A little over two months ago, I wrote the post called Multiple Sclerosis Update, which discussed recent MRI results. Here, I learned my multiple sclerosis is progressing at a faster rate than my neurologist both thought and hoped. This essentially meant the medication I have taken for almost the past two years — a once-a-day pill called Aubagio — has essentially not helped me. Because of this, my neurologist recommended changing my disease-modifying treatment. This new medication had to have one requirement: It needed to be an infusion because, simply put, both pills and injections are not as strong for my MS. In the end, I was left with three options:
Now for my update, and what this post will be on: My decision.
Since writing last, I have engulfed myself in research to determine which infusion would be best for me. While I have sought out information on each company’s site (that information in my previous post), I wanted to gather more. The following is what I learned . . .
There is a website called Comparison Review of MS Drugs, which reviews thirteen multiple sclerosis medications on the market. This means there is a direct medicine-comparison by analyzing cost, effectiveness, side-effects, safety concerns, and route of administration. On this site, I found Ocrevus to have the least side-effects — even in comparison to Aubagio. Those side-effects are infusion-related reactions and upper respiratory tract infections. Along with this, Ocrevus’s safety concerns were also fewer: infusion-related reactions, infections, and increased risk of certain cancers (which is troubling but by far less severe than the other MS-infusion side-effects).
This all felt like great news so I wanted to search for any negative press on Ocrevus. That’s when I stumbled upon this article, Ocrevus: Former Genentech Research Speaks Out. This well-written article is reportedly by a man who was diagnosed with MS fourteen years ago. He did research of the company that makes Ocrevus — that company, Genentech. His information on the medication begins with ensuring readers he is not anti-Ocrevus, or any MS medication for that matter. He says openly and honestly, “The simple fact of the matter is that there is no perfect MS treatment; each and every one has its upsides and downsides and even these are mutable depending on the particulars of any individual patient.” This, of course, is true and he continues writing, “It’s my sincere hope that Ocrevus proves to be safe and even more effective than was shown in its clinical trials.” This carries alarm and opens what he went on to explain:
Ocrevus is one of the newest MS medicines on the market and, it is getting an overwhelming amount of support from the press who hail it as “a tremendous breakthrough” due to “the revolutionary nature of this drug.” The writer though, wanted to air awareness about its past. He goes on to say that an earlier version of Ocrevus, called Rituxan, was made by the same company and put on the market. Rituxan, too, appeared to be a wonder drug and had a history of being safe; however, Genentech suddenly stopped research on Rituxan and develop a newer molecule, which became known as Ocrevus. The decision as to why this happened — when it was doing well — is still unknown.
Beyond this, the writer also analyzes the evil business of money. He writes, “It’s common practice for drug companies to funnel payments directly to doctors who prescribe their drugs.” He claims that Genentech pays doctors the largest sum of money — an amount that stretches far above other companies. To get more information, a site called Dollars for Docs comes in. This site states exactly how much money pharmaceutical and medical companies give doctors and teaching hospitals. Apparently, this information is required by law to release, which means the amount of details accessible to the public is incredible. Looking today, the site gives records from August 2013 to December 2016. It is here, I learned during that timespan my doctor received $89,500. This may be troubling and I’ll explain why . . .
To compare the amount my doctor received versus other physicians in the same city, I organized the 226 pages to detail funding highest to lowest. Out of a total of 22,535 doctors listed, my doctor is the 40th highest paid.
Giving you an idea of the gap between my neurologist and doctors in a variety of other fields — Many physicians were given a few $1,000. Still more were paid hundreds not even totaling $1,000; and even more received amounts less than $99. Again, mine received almost $90,000.
Further information I found interesting was that out of the forty pharmaceutical and medical companies that give money to my doctor, the drug that paid the highest was Aubagio — the medicine I was given information on and the medicine I took. Ocrevus, strangely enough, was not listed.
In the end, this information can appear concerning because — bluntly stated — one could argue doctors can be bought, and that this could be clear from encouragement to take Aubagio. It could be said that doctors push the drugs that most financially benefit them.
And this leads to the end of my research where a bit of common sense comes forth: Patients need to take their own health into their own hands.
Sure, there is a selfish motive for my doctor to recommend medication to me; however, it is my responsibility to determine if this selfishness outweighs concern for me, the patient.
I have been seeing my neurologist shortly after my multiple sclerosis diagnosis, which came in 2012. Every single time I see him or speak with him, I feel good and I cannot say this about any other doctor I have seen — and there have been a plethora. My neurologist is patient with my many (and I do mean many) questions, provides full answers without speaking above me, acts quickly when problems arise, and truly seems concerned for my well-being. Not only this but when I need to discuss medications with him, he outlines both positives and negatives of all, gives me the companies’ corresponding medicine pamphlets, then openly admits each time that pharmaceutical and medical companies do pay him to speak to patients about certain drugs, which is why he stresses for me to do my own research and come to my own conclusion.
My neurologist seems upfront and honest and never deceptive. Never once has he seemed the slightest bit a salesman pushing certain medications. He gives equal information to all disease-modifying treatments that are options. Lastly, he never gives his opinion unless I ask, and even then he reminds me that I need to do my own research and come to my own decision. “It is your health,” he says each time and for that, I am grateful because he is taking the time to remind me of this, to show me that he does not have a perfect answer, and to let me know that this important decision lies within myself but that he will support the path I choose.
It is because of this, I determined I would take Ocrevus. Looking at it from my personal research alone, Ocrevus has the least side-effects and those mentioned are not as harsh as other infusion medications. The press also claims that, in a large amount of research, Ocrevus is the most promising MS medicine yet. Lastly, when asked, my doctor sides with Ocrevus too and I trust him.
This all means it is towards Ocrevus I move. What awaits me?
- Approval from insurance
- Authorization from the infusion center (which will happen with documents showing approval from my insurance and neurologist)
- An eleven-day “wash-out” medication that will clear my body of Aubagio
- The first Ocrevus infusion, which is only half
- The follow-up and other-half Ocrevus infusion fifteen days later
- A hope that my body accepts the medication positively
- A wait and see with MRI results a year after to determine if Ocrevus is effective
Here’s to the next step. Here’s to Medication Number Three.
For more information on the disease-modifying treatments discussed, visit the companies’ websites:
For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.
Bezzie. ! What a dilema you have ! Your Neurologist seems a good bloke, has you and your health in mind. Hope you won’t be waiting long for the formalities to be completed. Here’s to you !! Midad. XX