If you spend much time with me you will learn that I am nothing if not thorough, especially when it comes to managing the ups and downs of life. When something comes up, especially health related, I tend to pour hours into studying and researching all available information on the topic. Somehow this helps me process the problem and deal with the situation. Although my coping mechanism can be really annoying to others and, I’ll own, might even seem a wee bit obsessive, it helps me make better decisions.
In 1993 when the first disease modifying drug, Betaseron, came out, my name was entered in the lottery for the few injections that were available to the public before the company caught up producing enough for everyone who wanted to use it. My name came up in mid-’94 and I have been on one of the now 15 disease modifying drugs ever since. In most circumstances, having choices is a good thing, but choosing between the options of so many different drugs for MS is an overwhelming, cumbersome, and even dangerous task. Most of them have some very significant possible side-effects and none, save the first three developed, have long-term studies describing how much they may actually affect the course of the disease or the negative health risks that might affect one’s life expectancy. Adding to the confusion is the fact that that no one knows how any of them work to curb the disease, largely because it’s unknown what causes it in the first place. What is known is that it’s an autoimmune disease whereby the immune system attacks itself. There are a lot of theories about how it initiates, but the strongest theories center around some kind of interplay between genetics, exposure to a viral agent, susceptibility, and even low Vitamin D levels.
Nevertheless, these drugs offer hope to the 2.9 million people living around the world with MS, nearly 1 million of whom live here in the United States. The drugs promise life altering results with catchy slogans like, “Put Relapsing Remitting MS in the Background”, “Hey, MS, Take This, You’re Messing With the Wrong Woman”, “Imagine What You Could Do With Fewer Relapses”… These catch phrases and slick sales patter make my blood boil! They make promises that are not real and make it seem like MS is nothing to worry about anymore. Nothing could be farther from the truth!
In light of the fact that the MS triggers are largely not understood, it isn’t very surprising to learn that no one knows how any of the disease modifying drugs work, either. They just do…for some…for a while. Thirteen of the drugs are exclusively for use in the Relapsing Remitting form of MS (RRMS), typically the first stage people go through who have the disease (about 80-85% of those diagnosed initially have RRMS).
The National Multiple Sclerosis Society defines RRMS as “characterized by clearly defined attacks of new or increasing neurologic symptoms, followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission.” The drugs for RRMS have been shown to slow disease progression (but don’t stop it), make flair-ups less damaging to the nerves affected (but irreversible damage still occurs), and reduce the number of flare-ups over time (but you will still have disease activity) by about 1/3 to 1/2 of what it would have been without the drugs. Research has also revealed that use of these drugs pushes accrued disability further down the line for most people. However, up to 95% of people with RRMS progress to Secondary Progressive MS (SPMS) within 20 years regardless of the disease modifying treatments available. SPMS, as defined by the National Multiple Sclerosis Society, is the stage of disease progression that most often follows RRMS in which there is a progressive worsening of neurologic function (accumulation of disability) over time. One drug has been approved for use both with people who have worsening RRMS that have not responded to other treatments as well as for those who have moved into SPMS. The last disease modifying drug is exclusively for those who have Primary Progressive MS (PPMS). PPMS is characterized by worsening neurologic function from onset of the disease with continued, worsening accruement of disability. Make no mistake, the development of these medications is a wonderful thing. I have been on several of them myself and advocate that others should consider taking them, especially for people who have RRMS. But the bottom line is, there is NO cure for MS, just look at the numbers I placed in bold above.
What does all of this mean? It means nearly all people living with MS will eventually reach a significant level of disability. Regardless of this fact and because drug companies have done a fantastic job of marketing their drugs, Joe and Jill public most likely think that those who have MS just need to take some injections, pills, or infusions so their disease will be under control with nothing more to worry about. I cannot tell you how many people over the years have told me about “the new drug for MS.” They are very well meaning, I appreciate their interest, and I love that MS is on their radar, but they don’t know anything beyond the self-promoting words in the ad they heard or the blurb mentioned on the news about “a breakthrough in MS.” If the communal impression about MS is that there “are drugs for it” and there have been “breakthroughs”, then where will the impetus for pushing for more research and funding for more advancements in treatments and to actually find a cure come from? Moreover, will those who are newly diagnosed and their families be able to read past the glossy slogans of their disease modifying drug to see the real and likely long range outlook of MS? Will they feel like an enigma or a failure when the bubble starts to burst on all the pretty promises made from the literature the drug companies sent with the first dosage pack?
Like all other diseases, syndromes, and disabilities, the rest of the world at large will only care when they come in contact with and get to know someone living with the realities of a handicap. Change comes when you finally understand. I decided a long time ago not to try to keep my MS a secret. Maybe it was the educator/therapist in me, but I realized that if I didn’t share my struggles that come directly from my MS, no one I know will care to want to work to find a cure. There is still a lot of work to be done to cure MS. One of the popular slogans to raise MS awareness is a pretty good summation of my thoughts about the disease: Believe in, Dream of, and Hope for a cure!