My Letter

I am a patient with follicular non-Hodgkins lymphoma. I was diagnosed when I was 29 years old and have received treatment three times in 7.5 years. Just last month, I found out the cancer is back again. My husband and I have a four-year-old son.

I am contacting you regarding a CMS ruling that will have a devastating effect on the survival of patients with lymphomas. The ruling is contained in CMS-1392-FC as it relates to Bexxar and Zevalin.

If this ruling is not reversed, patients in need will be denied access to a life saving therapy, and future patients will be denied access to Bexxar or Zevalin and similar targeted drugs.

The last time I was treated for my lymphoma in September of 2005, I received Bexxar at Stanford. It was by far the easiest treatment I have endured and it gave me 23 months of remission. When my oncologist told me I was relapsing, my first thought was to see if I can receive Bexxar again; if not, Zevalin.

To find out one month after my biopsy that both Bexxar and Zevalin are at risk of becoming inaccessible to me and thousands of other lymphoma patients leaves me feeling more hopeless than at any time in my 7+ year cancer journey. It is hard enough to get a cancer that typically strikes an older patient population (60s and up), it was hard to go through chemotherapy with a five-week-old newborn as a first-time mother. It has been hard relapsing twice since giving birth. But my husband, son and I get through these challenges with the support and love of our family, friends and amazing doctors.

This CMS ruling leaves us in anguish. Forget all the insurance woes we have dealt with and the financial repercussions of living in a high-cost of living state coupled with a serious medical condition at such a young age. To know that even if we could come up with $25,000 to buy Bexxar ourselves, we will not be able to have access to this drug, that is unthinkable.

Are the folks at CMS going to come explain to my son that Mommy has to receive standard chemotherapy and be sicker than ever when there is cutting-edge therapy on the market like radioiummontherapy? I think not. Do they understand that my form of lymphoma has had standard therapies for over 40 years and is classified as incurable with those standard therapies (i.e. traditional chemotherapy)? Do they understand that unless we support and encourage the research for these novel therapies like Bexxar and Zevalin, I face an uncertain future. At least with RIT, there is hope. They are taking away my hope.

Even the medical experts cannot believe this ruling, and that RIT is being called "diagnostic" which is a bold lie. ASH (The American Society of Hematology) has written: the CMS ruling will have “a chilling effect on the development of future drugs and radiopharmaceuticals for treating other forms of cancer and other diseases.”

ACTION NEEDED

I respectfully request that you take all necessary actions to reverse CMS-1392-FC as it relates to Bexxar and Zevalin.

For background on the consequences of this ruling to patients, please see the Newsweek article of Nov 14: (http://www.newsweek.com/id/70301).

With great sincerity,
Jessica Nichols