Apr 212006

or so it would seem for some select vocal members of the Multiple Sclerosis community. In the latest edition of InsideMS there was an article on the people with Multiple Sclerosis voicing the support to the FDA for Tysabri’s return. [PDF version with both quotes] (For the record I have no stance on Tysabri. I am doing too well to take a drug this new on the market). What I found most interesting, and upsetting, about the article was two quotes from fellow MS’ers. Barbara Cooks: “Tysabri was easy to take, and it improved my walking and mobility. I’m not afraid of dying; I’m afraid of living as a burden to those I love.” And Marcy Canavan “Quality of life is more important to me than quantity of years lived.”

My suspicion is that these views are not really well thought out, or is mostly rhetoric to get the desired result of a return of Tysabri. Regardless, what I dislike is the radical devaluation of life, and those with disabilities, in their quotes. Quality of life is more than being able to walk or use your hands or any number of other activities. I certainly would rather not be disabled (or seriously disabled in the future), but I definitely would not rather risk death than be disabled. Secondarily, I think it devalues the lives that people with disabilities live every day, with many having an excellent quality of life – some certainly even better than people without disabilities. The idea that quality of life revolves around a lack of disability is a very poor view of quality of life. If a person would let a disability ruin there quality of life, and define their life, then they have really let the disability/disease win.

I do suspect that their attitude is simply a reflection of a much larger problem of the view of quality of life in modern times. I guess the question becomes has Singer’s philosophy become this prevalent, or is he simply echoing the subconscious of the masses (in a more philosophically consistent way)?

  9 Responses to “Death Before Disability!”

  1. I have a few questions. Have you been tested for Lyme Disease? Perhaps you already know this but Lyme Disease mimics many
    different diseases in symptoms, including MS. Do you use the artificial sweetener Splenda? Splenda has been linked to MS. Again, perhaps you already know this but having been diagnosed with MS you should most definitely avoid Splenda. One more question, have you heard of the product Natural Cellular Defense (liquid zeolite)? It effectively removes heavy metals from the body and a variety of toxins which can be involved in triggering MS and aggravation of the disease. This is a very new product and I know doctors using it in a clinical setting, recording results, and it is highly effective. It could be of great assistance to you.

  2. The above post by prstein is comment spam. I received a longer version of this email from Paula.Rothstein@medicinefreeliving.com (same person this comment came from). Based on a brief interactions with her, she is probably SPAM’ing quite a few people.

  3. Your final observation about Singer’s observations (postulation) made me sit down and think for a moment. His ethical arguments that “Abortion, euthanasia and infanticide” are the correct and right in special circumstances is an entirely dangerous path to start down. Several steps he takes to obtain his conclusions fail to take into consideration intangibles outside of his sphere of reasoning. Thoughtfull, but shortsighted. I tend to believe that the masses do not (in a Jungian manner) march to his tune.

  4. mdmhvonpa,
    I wish I could concur, but we live in a fallen world. At this point in time we seem to be a culture of death.

  5. Erik,

    I found your blog by accident this evening as I was trying to learn more about the effects of steroids on stomach acid. In any case, I read a number of your blogs including the one about the testimonies on Tysabri. I understand and agree with your views on the devaluing of life for someone with a disability, but I had a different take on what the people were trying to say.

    I didn’t see their comments as a devaluation of life when disabled even though they may well have intended this. What I saw is their willing to take a known risk through the use of Tysabri for the benefits they had seen from the drug. I think they made their statements in an extreme way in order to get that point across. I agree with the FDAs role of understanding the side effects and risks of medications as part of approving them, but I also believe that there are no medications that don’t have a side effect. Many medications have potentially terminal side effects and even some that you can purchase off the shelf if taken in certain combinations.

    In the case of Tysabri, there are risks, but based on the feedback I have heard from people who used it there are clear benefits. I support what those testifying before the FDA were trying to do even if some of their statements could be interpreted in a less than appropriate way.

    For the record, I have MS, but have not take Tysabri. I declined the drug when originally offered because I didn’t feel my condition was such that I should take it. I serve on the Board for the Georgia Chapter of the National MS Society, and I am in the process of joining the Board of the Multiple Sclerosis Center of Atlanta. I am a Research Advocate for NMSS, but I have never testified for or against Tysabri or any other medical treatment for MS. I also have no connection with Biogen/Idec or Elan Pharmaceuticals, the makers of Tysabri.

    Thanks for your continued writings. I have enjoyed them and will likely bookmark your Blog for future reading.

    Mark Neville
    Atlanta, GA

  6. Mark Neville,
    I suppose one (me) could get desperate enough to try almost anything. Tysabri would fall in the desperate category for me.

  7. Was surprised to see an MS’er being anti-Tysabri, but given the news reports about the drug’s rare PML side effect, it is understandable.

    What is probably not well understood is that zero (0) MS patients have died of PML while on Tysabri therapy. According to the NEJM, the MS patient who died was misdiagnosed with MS – she did not have MS, or an aggressive immune system but rather she suffered from a compromised immune system.

    Tysabri works by reducing the number of active VLA4-mediated T cells in the typical MSer (who has a far higher and disproportionately active number of these cells) by 50%.

    The lesson from the whole controversy is that if you don’t have MS, or if you have HIV or some other immune compromising condition accompanying your MS, then don’t take Tysabri. But, for 90% of MS’ers Tysabri would seem to be the best and most logical choice.

    Hope your MS is not progressing Erik, regardless of your therapy of choice!

    Best regards,


  8. Hi Erik, why haven’t you put in any comments on your blog since April 2006? Hope you are OK, I liked all the comments and hope to read more. Check mine out at Tysabrihelp.blogspot.com. Good luck to you!

  9. Dee,
    I have made a lot of comments/posts on the blog since 4/2006; though not on this post. I don’t know where you are going but http://blog.thesmithlife.com/ has the latest stuff.

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