Friday, February 29, 2008

Letter from Mother of MS Patient

As regular readers of Brass and Ivory know, many who comment and the many more who do not, I am straight-forward and sometimes brutally honest about the information and ideas I encounter. I do not enjoy being manipulated, nor do I relish a good argument for argument's sake alone.

I really am the shy, quiet type in real life, albeit confident in my area of expertise. As someone who passed the Calculus AP (B/C) test in high school without ever sitting in on the class (story for another time) and passed with a very high score (enough to fulfill all college math requirements), I am a quick study - smart and logical. That's just me.

Recently, I wrote about a drug company, a public relations company, a pharmaceutical promotions campaign, a Newsweek article, and an MS patient with connections to each. The patient, Gregory Roehrich, was brave enough to lend his story and his face to the cause of MS Awareness.

March is designated National MS Education & Awareness Month, by the Multiple Sclerosis Foundation. March is the month which The Montel Williams MS Foundation is holding it's big Gala fundraiser honoring Billy Tauzin, CEO of PhRMA (Pharmaceutical Research and Manufacturers of America.) And March 10-17, 2008 is MS Awareness Week for the National MS Society.

Do not be surprised if persons with MS are present through various media sources during this time. I point you to our friend Mandy who asks some basic questions regarding what exactly we want people to know about MS and more importantly living with MS.

Now I share with you an email that Gregory's mother sent to me today which she offered to share with you. She has some concerns over the discussion which ensued after I wrote PR for MS - Ogilvy and Betaseron. I highly recommend that you read the article and the comments first to understand some of the references which Mrs. Roehrich makes.

Some final things which I'd like to say is that I commend Gregory for being pro-active in his choice of managing his MS. It is wonderful that he has not suffered severe disability and I hope that his stability continues for a very long time. Eating well and exercising are excellent ways to protect your body's resources and it's unfortunate that this was not included in the Newsweek article. Drugs alone do not keep us healthy.

Dear Lisa,
I am Gregory Roehrich's mother and felt compelled to write.
I would have responded to the blog but am embarassed to say that I don't have a clue how to set up the account.

I find it very curious that you would spend precious time researching my son's article in an attempt to find something negative to post. As far as his "can do everything" attitude, I hope and pray he never loses that. Having to tell my 19 year old that he as been diagnosed with multiple sclerosis was the hardest thing I ever did in my life. To then sit down and have a conversation about life changing as you know it but "that" life does not have to a negative living with MS was a whole other conversation. My son got that wake up call very early on in life and has made choices in how he wants to live his life based on this diagnosis. He has made the choice to create balance in his life both in his career and in his personal life--something that many of us don't do until we have that mid-life crisis. What he failed to mention in his interview is that not only does he take an interferon, he also eats very well, exercises daily and takes various supplements to complement the interferon. What is so wrong with having his face and attitude linked to the image of MS? What is so wrong with having another young man or woman faced with this diagnosis and thinking that their life is over, reading this article and having some hope for their future? What is so wrong with the PR company in the background promoting a "feel good" campaign? Everyone has the choice to take medication or not--in my son's case, I don't know if it is the Betaseron working, the supplements and lifestyle, a combination of both or maybe none of the above, but I know I would never encourage him to eliminate any of them. I am very proud that my son had the courage to put his face out there knowing that there would definitely be a stigma atttached once people found out he had MS. He has faced that stigma but the overwhelming positive impact he has made on other people's lives has outweighed any of the negative.

Feel free to post my e-mail on your blog.

I responded directly to Mrs. Roehrich and afterwards she still felt comfortable with my posting her email on the blog. And she asks some excellent questions, worthy of reflection.
  • What is so wrong with having his face and attitude linked to the image of MS?
  • What is so wrong with having another young man or woman faced with this diagnosis and thinking that their life is over, reading this article and having some hope for their future?
  • What is so wrong with the PR company in the background promoting a "feel good" campaign?
How would you answer Mrs. Roehrich's questions?


  1. Lisa,
    I am having a difficult time putting my thoughts into words at the moment about this issue. I'm going to give it my best shot late on a Friday night...
    The questions Mrs. Roehrich asks are fair. I believe there is nothing wrong with Gregory having his face and attitude linked to MS, perhaps giving hope to a newly diagnosed MSer. What is wrong is her statement that everyone has the choice to take medications. Some don't have the financial ability to do that, they may have no insurance or insufficient coverage. They may not have the social network or support system in play to help them to take the meds (when I was newly diagnosed I was physically unable to give myself injections). The side effects are enough to cause many to forgo the treatments,
    pre-existing conditions, like depression, may need even more treatment than the person is already undertaking, and remember that the DMDs are not indicated for all MS. These are all underlying factors that the PR company doesn't tell you about. Tell us the truth about these treatments and how much they cost and the burden to a family unit, not just the patient. It is fine to offer hope. But remember that hope is not ignoring the truth. It is about fixing on the best possible outcome, striving for it, and dealing with the obstacles that present themselves while doing so. PR companies don't give you the whole story, that's not what they are paid to do. And that's why we have little trust in PR feel good campaigns.
    Rather than hire a PR company to promote a feel good campaign, I'd like to see the drug makers committing that money to more research, more services to disabled MSers, and bring the cost down of their existing medications.
    I am thrilled that Gregory is able to do the things he wants to do and I do wish for him continued good health. And I sure hope he realizes how lucky he is to have such a wonderful support network in his family. Not all of us have that and that is part of my own PR campaign when speaking to folks about MS.


  2. Dear Mrs. Roehrich,
    Did you read my previous comment as to why your son may not be the fantastic image of MS for people living with MS? I will restate: MS takes many different courses. The majority of people will need a cane or wheelchair 5-15 years after diagnose. No drug co. under oath would say anything different, because that is the current reality of life with MS. People do not need stories of how MS will not affect your life, and you can still climb mountains---they need the truth. MS is a CHRONIC PROGRESSIVE DISEASE for the MAJORITY of those diagnosed. So what if Greg is A-OK now? So what if he is A-OK all his life? People with MS get hope from hearing from people who CAN'T climb mts. or ride bikes or hike or drive race cars YET STILL are happy with their lives. People who eat right, find ways to exercise, sharpened their emotional tools and planned for a life w/a disability after diagnosis. Drug companies do not want THOSE stories told and I am insulted by that. I have now and always had a good attitude about my MS; I had a good attitude when I was told I had ovarian cancer, but I would NEVER allow a major magazine (or any cancer drug co.) to USE the fact that I am happy, cancer free, an "inspiration!"==baloney! The majority of women with ovarian cancer will die. I am lucky that my course allowed me to live 13 years, PERIOD. After diagnosis I planned for the very likely possibility of death. My family, friends and co-workers found me to be inspiring with my ACCEPTANCE of my condition and continued positive love of life. Mrs. Roehrich, how many people with MS do you know who must use wheelchairs? How is your son an inspiration to them? Do you get it, yet? We are all happy to know a person with MS whose course is benign; who is in remission; but we also are happy to not be treated like children. (YOU had to tell your 19 year old son he had MS? Where was he? He would have been devastated? That is a shame, life is full of unpleasantness--I hope he is stronger now. We all need to be strong.)
    Diane- PS: People like Lisa research such issues for those too weak from MS to do so. We KNOW our Drs. take money from drug companies, we see now that 15-20yrs out most people taking drugs are exactly where they would have statisticaly been without them. We watch side effects change as time passes. We WANT a reason to TRUST, and we search for that. People like LISA inspire me! I am insulted that you would think we are looking for a reason to feel negative.

  3. Well...DAMN YOU LISA, for causing us all to THINK and form opinions! How dare you challenge our pointed little MS heads! LMAO

    All I can say is, YOU ROCK, girl...I sure have missed some awfully good controversy over here while being sick with my CRAPPY CASE OF MS (Which I take Novantrone for, readers from other drug companies, and I STILL have relapses...sigh). Keep up the magnificent work here,'s good to be slapped around a bit...brings us all back to consciousness.

    Linda D. in Seattle

  4. Ladies, thank you so much for your kind words and strong support. I am deeply touched.

    To truly understand the opinions of another requires us to consider the experiences of that other person. This is one of the more difficult aspects of being human - we tend to look at things from our own point of view.

    Only those folks who have struggled with the financial aspect of trying to gain and keep access to one of the DMDs for my MS might understand my frustration with 'the system' and the deceptive propaganda of pharma-related organizations. The most striking example which first (and always) comes to mind is the 'Partnership for Prescription Assistance' by PhRMA, a reputation-repairing, self-promotional campaign with very little substance.

    I think that the majority of self-employed persons who do have individual health insurance would not understand my struggles if they had not had the same experiences. There is not a level playing field out there.

    Although MS doesn't discriminate, people do and it is impossible not to bring your own opinions to the game.

    I believe that Gregory's family has been reading more of 'Brass and Ivory' and I hope that they continue to do so. There is much positivity to be found here. I can emphasize with Mrs. Roehrich who as a mother doesn't want anything to hurt her son. Mothers often want to be able to take away their child's disease or pain. I know that my mother would have done anything to be able to take away my hurt and struggles while dealing with MS and RA. But as Diane says, it is my course in life not hers.

    As a song once said - "you gotta keep on keepin' on" - and hopefully spread some love and joy along the way.

  5. Jojo - Keep On Keepin On


    You got to keep on keepin on
    You got to keep your head up high
    You gotta work with what you've got
    And someday you will flyyyyy

    VERSE 1:
    Poor kids pouring cold water in their cereal
    Second hand clothes
    Surviving is pivotal
    Praying to God at night
    That things'll get better soon

    I remember when I was in your position
    Tried to tell people my story
    But no one would really listen
    I know times are hard right now
    Happiness is hard to find right now

    You got to keep on keepin on
    You got to keep your head up high
    You gotta work with what you've got
    And someday you will flyyyyy
    You got to keep on keepin on
    You got to keep your head up high
    You gotta work with what you've got
    And someday you will flyyyyy

    VERSE 2:
    Lookin out the window to a rose grows in concrete
    Dreamin' of the day when you'll be standing on your own feet
    Hard to find the good in such a scene so bad (scene so sad)*
    Seein other kids with their Tims on
    Fresh with Air Ones, wish I had one
    Longin' for a day when you get your chance to shine
    Don't worry, there'll come a tiiiiiiime


    Young girl sittin' on the steps of her duplex (mmmm)
    Why you gotta choose to make my life so complex
    Breathing to the beat of a slow, sad drum
    Trouble leaves some moments for some fun
    I can almost guarantee you
    It'll get better todaaaaaayyy


  6. As with any other disabilities, I need to trust our medical experts as well as my identification with MS (along with other disabilities).

    I dislike "feel good" campaign because they do this to emotionally prompt you to do something that is often not in your character.

    To me "feel good" campaign should be without agenda. Yes... there is always hope in all catagories including disabilities (not just MS). I do not like taking drugs but I will take them if they help me.

  7. Thank you all for such straight talk. This is very inspiring and insightful...