The Choice to Not Take an MS Drug

In the second of our year-long series of debate blogs, Trevis talks about NOT taking an MS disease modifying therapy'.

Firstly, let me state unequivocally that I believe that multiple sclerosis disease modifying therapies (DMT) work. They work for different people to differing levels of success with different rates and severity of side-effects. The DMTs are an important tool in taking control of our disease.

I have taken three different drugs to change the course of my MS in the 15 years since diagnosis. I am currently (and for the past five years) “between therapies” with the consent and supervision of my MS specialised neurologist in America. This course is not for everyone. It is my choice and that is what I want to address in this rebuttal (if you will) to Niamh’s well-written blog about taking MS meds: CHOICE.

First we must understand the reasons people might decide not to take a DMT and we must take into consideration that the MS & Me blog is read by an international audience. 

  1. Cost
  2. Adverse reactions
  3. Drug sensitivities
  4. Support systems
  5. Availability
  6. Personal decision

1. Cost - The prices charged to governmental entities and health insurance providers internationally varies, but they are all different versions of really expensive. I, personally, can attest to that. I am in something of a pharmaceutical dead-spot myself. As a legal, (but not yet permanent), resident of Ireland, I am not eligible for the prescription drug scheme that residents and citizens may avail of. I have private insurance to cover medical costs in Ireland, but there is a seven year pre-existing condition clause in my policy. This means I am not covered for MS-related medical expenses.

My insurance from the US (I used to get my medication from there), - has a $900 per month co-payment for the least expensive of the (now 13) Federal Drugs Authority (FDA) approved medications for MS. Yes, per month I am out- of- pocket by $900USD for the medications. The financial cost to me is not the only determining factor in my decision, but I will not skirt the fact that it is one of the factors.

2. Adverse Reactions - Sometimes called side-effects, these drug-related reactions can vary in severity from nascence to life-threatening. Along with ease (or lack of ease) in administration, the side-effect profile of any particular DMT is the #1 reason people stop taking or switch their course of treatment. Some reactions are so severe that organ damage (particular liver, heart and sometimes kidney) precludes people from being able to (or being comfortable with) taking a different DMT.

3. Drug Sensitivities - In some cases, while a small group of people may be allergic to the active ingredient in a DMT, a larger number may be sensitive to the additives or preservatives used in the medications. As with the sensitivities, other people may have co-morbidities (such as organliver/kidney issues) that make their systems sensitive to many medications. I, for one, used to joke with doctors that I was “allergic” to large needles. I wasn’t of course, but there are allergies and sensitivities to such things as albumin protein or other animal matter used in the manufacturing of DMTs that take some (or all) drugs out of the potential treatment category for some people.

4. Support Systems - From compassionate medical professionals to friends and family able to help with injections, the support systems that many of us enjoy are not universal. I often read of people needing to travel to different counties or even different countries to receive the care required to make informed choices about their MS treatment.

Patient support organisations such as, MS Ireland, are a lifeline to many of us in the MS community but even these organisations are not available in all areas. Added to this ‘gap’ is the social stigma attached to disability (in some communities and cultures). We can also appreciate how the support systems a patient has – or doesn’t have are a major factor in his/her decision on DMTs.

5. Availability - Earlier I mentioned the 13 FDA approved MS disease modifying therapies, well in Ireland there are only 11 medications available but the European Medicines Agency has approved 12.  While 11, 12 or even 13 drugs may seem semantic, this variation is indicative of the inconsistencies in DMT availability around the globe. Simply put, some people don’t take the drugs because they are not available where they live,

6. Personal Decision -  Here we are to the crux of my argument.

As well as the factors I’ve listed here, there maybe a myriad of other reasons a person chooses not to take disease modifying therapies. The point I hope I make in this rather long-winded argument is that it needs to be a true choice. Not a default that some people don’t because they simply cannot (cannot afford, cannot find one that is comfortable, cannot tolerate, cannot be assisted or cannot avail of). There is a world of difference between “cannot” and “do not” when it comes to MS DMT.

If a person goes through all of the cost: benefit ratio analysis, if she/he is provided with medically correct support information and makes an informed choice to not take a drug, I understand. I believe however, that a person who is not on DMT due to the fact that there isn’t an affordable drug that they can find and be supported to take without making them sick, is not a choice. There is a world of difference. 

I support a person’s choice. I do not accept relegation.

Thoughts?

Wishing you and your family the best of health.

Cheers,

Trevis

Trevis' book, Chef Interrupted, will be published in Ireland in 2017. Follow him on the Life With MS Facebook page, on Twitter, and check out his website.