1. Health
You can opt-out at any time. Please refer to our privacy policy for contact information.

Why Isn't Everyone With MS on Treatment?

By

Updated January 15, 2008

If you haven’t heard it yet, here goes: If you have relapsing-remitting, secondary-progressive or progressive-relapsing multiple sclerosis, you need to have a serious discussion with your doctor about whether you should be on one of the disease-modifying therapies. Even if you feel good right now. Even if you hate needles. Even if you haven’t had a relapse for a while. Even if you think that there will be a cure for MS soon. Please: Talk to your physician about these drugs. Despite misconceptions, side effects and inconveniences, the bottom line is that they decrease relapses and disability for most people that take them.

I was shocked to find out that most people with MS were not on treatment, which was revealed in the first study to look at prescribing patterns of disease-modifying drugs for people with MS. The study showed that 92% of people with MS visiting general practitioners and 62% of MS patients of neurologists are not on therapy. Read here for my review of this study on prescribing patterns of MS treatments.

Possible Explanations

The study was designed to describe the situation around MS drugs, but not answer the question “Why is it this way?” The researchers put forth the following possible explanations:
  • High private insurance co-pays deter some people from going on therapy
  • Some patients with mild symptoms, especially early in the disease, may choose to put off treatment and wait to see what happens
  • Some doctors, seeing only mild symptoms, may advise the patients to delay treatment
  • Both patients and doctors may be waiting to see what happens with a certain new drug
  • Patients may have a lack of awareness about the pros and cons of treatment
  • Patients may be advised by their physician that they do not meet the criteria for taking therapy
  • Differences in physician communication styles may limit uptake of therapy
  • Physician beliefs about the appropriateness of the drugs may prevent them from prescribing the drugs
  • Physician perceptions about internal organizational constraints and policies about use may also prevent them from prescribing the drugs

My Take

As a person with MS myself, I know that several thoughts went through my mind when the question of starting therapy came up that would not necessarily occur to researchers conducting a medical systems overview. I had to grapple with each of the following thoughts, and can understand that any one of these reasons could be a deterrent:
  • Dislike of Needles: This is very rarely mentioned in the campaigns promoting the disease-modifying medications or the ads with smiling patients, but let’s face it – this part is no fun. None of the current medications is taken orally, so we have the less-than-pleasant choice of subcutaneous or intramuscular injections or intravenous infusions. While our feelings about this may range from complete and abject needle phobia to a more mild dislike for them, nobody likes it.
  • Side Effects: Some people just don’t like to take medication. Period. Much of this can be explained by fear of potential side effects. While this is understandable, it needs to be emphasized that all of the older drugs (Avonex, Betaseron, Copaxone and Rebif) have excellent safety profiles. Again, a skilled neurologist can help you choose the treatment that fits your lifestyle. There are also several tips gathered over years of patient use for managing side effects.
  • Not Impressed with Results: I have heard several times that “all the (older) drugs are the same – they all reduce relapse frequency by 30%.” To some people, that might not sound impressive and compelling enough to endure the aforementioned side effects and needles, especially if their relapses are mild and infrequent. However, this statistic is based on two-year trials and much more encouraging statistics from longer-term use are becoming available.
  • Waiting for Something Better: There are several promising therapies in the pipeline. We have even been told that a cure for MS may be available in our lifetime. Please realize that it takes a long time for any drug to reach patients from clinical trial stage, as these trials are comprised of many phases and other things have to happen before they are available, including: FDA approval, manufacturing enough drug for distribution, inclusion for coverage by insurance and other steps before usage is widespread. Keep waiting for something better, but do what you can to stay healthy and minimize disability while you wait by taking one of the medications that is currently available.
  • Relapse-Management Approach: Early in their MS journeys, people may experience relapses that are infrequent and mild, with symptoms that can be addressed with prescription medications or simple lifestyle modifications until the relapse is over. Even if the symptoms are dramatic, such as loss of vision from optic neuritis, many relapses can be shortened by a short course of Solu-Medrol (a high-dose corticosteroid given intravenously). At this stage, it may be tempting to some to continue like this, dealing with the symptoms as they come and enjoying symptom-free remission periods. This approach is unwise for many reasons, including a 42% chance of residual disability from each relapse and potentially serious side effects from Solu-Medrol treatments.
  • Financial Concerns: This is beyond the scope of this article, but there are several ways to address this problem to obtain your medications. Talk to your doctor and your local MS Society chapter about solutions. Also, all of the companies have programs to help people get their medications.

One Last Time...

This is not the time to listen to someone’s story of a friend of a friend with MS who did just fine without medication, and in fact healed herself with water from the River Jordan. Please – be aggressive about finding out more about these medications for your situation. Bring the article about prescribing patterns to your doctor to facilitate the discussion. Seek a second opinion from a neurologist if you are not satisfied with the answers you get.

Source:

Jagannadha R Avasarala, Cormac A O'Donovan, Steve E Roach, Fabian Camacho and Steven R Feldman. Analysis of NAMCS data for multiple sclerosis, 1998-2004. BMC Medicine 2007, 5:6

  1. About.com
  2. Health
  3. Multiple Sclerosis
  4. Newly Diagnosed
  5. Why Isn’t Everyone With MS on Treatment?

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.