Wednesday, December 9, 2009

Our Voices Matter

I've been a mighty lucky guy throughout my myeloma voyage, at least so far. I had a great doctor watching me through MGUS and smoldering, and then was lucky to get a wonderful Mayo doctor who used an PET scan to determine that I was symptomatic BEFORE any bones broke, and got me on a trial of pomalidomide, which has kept me stable (and running!) for the better part of two years. And my insurance has been good.

Others are not so lucky, and I meet many of them in our local Twin Cities support groups. Many have broken bones or other organ damage because of poor diagnosis, or have been on every approved and available treatment including autologous and allogenic stem cell transplants, and don't know what to do next. Many have struggled with their insurance companies or with Medicare to get the treatment that their doctor advises, and some have chosen a less-preferred treatment because insurance would not cover the preferred one.
International Myeloma Foundation
The International Myeloma Foundation (IMF) has joined with the Myelodysplastic Syndrome Foundation and the Tackle Cancer Foundation to create a Cancer Patient Statement of Principles. Hover over any one for a more complete description of that principle, or click it to download the full document from an IMF web page:
These seem to be common-sense fundamentals, but we don't have them now. Example: Insurance may pay for Velcade, because it is administered as an IV drip in a hospital or clinic setting. But insurance may not pay for Revlimid, because it is a prescription. Therefore the patient may choose Velcade and drive to a hospital several times a month, possibly hundreds of miles, even though the doctor might believe that Revlimid would have been the better treatment for this patient.

Example 2: I know several people now who have died from myeloma which progressed because nothing worked any longer. I wish those friends could have had the pomalidomide that I am taking, or the carfilzomib that is also on the horizon. Who knows - they might still be with us.

Needless to say I believe strongly in these principles. They make a lot of sense to a cancer patient. So what do we do about it? Lobby! Right now health care legislation is big news, with large issues like "how will we pay for it all" taking up most of the air. Nevertheless, our issues will require new legislation. There are congressmen on both sides of the aisle willing to get behind a bill, or perhaps an amendment, when the time is right. Whether this happens as a part of a huge new health care bill or as a follow-up bill, the IMF needs support for its lobbying effort in Washington.

If you agree with these principles, I encourage you take action, and to send an email to your representative and your senators. The IMF has a web page which makes it easy to do that and to learn more about pending legislation and even to sign up to be notified about changes.

Thank you!

More ASH news coming up, stay tuned. -- Don


  1. I have a comment on Principle 1, cancer prevention, that is. As you point out, we don't have them now. Case in point: in the fall of 2005, a month or so before I found out that I had 50% neoplastic cells in my bone marrow (=less than 40% in 2007), I contacted two internationally-renowned MM specialists in the U.S. and their equivalent in Italy. Three famous specialists.
    I asked each one what I could do to slow down what seemed inevitable at that point--that is, the progression of my MGUS to MM. None of them had any useful suggestions, aside from the generic eat-a-healthy-diet recommendation (but with no specifics). They basically told me there was nothing I could do. Nothing. Back then, I didn't question things...
    At any rate, this has got to change. There needs to be more funding of research on prevention...could dietary changes help? How about supplements? What about vitamin D (I wrote a post about the Mayo Clinic vit D and lymphoma study yesterday)? Exercise? And so on. We need guidelines based on scientific data. Until then, Principle 1 is a joke.
    Just my opinion...and you know that I have strong opinions! ;-)

  2. Oops, I added my second sentence as an afterthought and made a mistake. I meant to say: "As you point out, we don't have any of these common-sense principles yet."

  3. Hi Don, interesting to read, however some hyperlinks do not work.



  4. Hi Hans,

    I do appreciate the comment! But when I try the links they all work. Any particular one?

    Thanks, Don

  5. Don, I have called too early. Now everything works perfectly. It was the hyperlinks under the principles. At first I thought it was the browser firefox or konqueror (I use Linux), but then I read that the server was overloaded at that time.

    I also asked my doctor what I could do to remain stable (a good result yesterday!), And got no real answer.

    Principle 1 requires, as Margaret says much struggle. I told the doctor about turmeric and a given article.

    keep running,


  6. ..and gave her an article about Turmeric

    (Google also has trouble translating that difficult Dutch in English ..)