Saturday, November 24, 2007

WILL WASHINGTON SENTENCE LYMPHOMA PATIENTS TO DEATH?

The answer is yes, if Congress doesn’t act quickly. In a tale that defies belief, Bexxar and Zevalin have become mired in an governmental accounting error that will result in their no longer being available unless Congress fixes the error before January 1. And if they don’t? Some of the 500,000 lymphoma patients in the United States will surely die.

As most of you know, these drugs have yielded response rates as high as 95% even for patients who have failed other types of treatments. And with some patients in complete remission for many years, even after nothing else worked, some doctors are even beginning to whisper the word “cure.”

For all Washington’s talk of its commitment to curing cancer, you’d think these drugs would be hailed as the miracles they are. Wrong.

Each year, the Centers for Medicaid and Medicare Services (CMS) tells hospitals and doctors how much they’ll be paid for drugs, services and procedures. CMS decided that payments for Bexxar and Zevalin, in 2008, will be cut to about half of what hospitals have to pay for them. With a shortfall that hospitals can’t possibly absorb, the drugs simply can’t be offered to patients.

Why on earth would a federal agency do this? From the day these drugs were approved in 2002 and 2003, they didn’t fit neatly into any CMS category. Rather than creating a new category for a new class of therapy, CMS forced them into existing ones, much like trying to force a square peg into a round hole. The flawed accounting methodology has worsened each year until it finally doomed these drugs to their own deaths. Even more unbelievable is that the agency’s report admits to basing its decision on flawed data!

So where does this leave people who need the drugs? It leaves a 19-year-old woman begging for her future. A 37-year-old father pleading to watch his two boys grow up. An active 67-year-old grandmother, who has no other options, facing death. And it leaves angry families calling this blunder “bureaucratic genocide.”

Physicians and organizations representing them have weighed in, too. Dr. Richard Wahl of Johns Hopkins says, “The prospect of their (Bexxar and Zevalin) not being available due to CMS is criminal.” And patients with other forms of cancer are wondering if this could happen to drugs that could possibly save their lives.

Time is short, but Congress can fix this horrible mistake. If they don’t, their fellow Americans will surely pay dearly…with their lives. And the 10.5 million cancer survivors plus their families will surely remember that when they go to the polls.

If you haven’t already, I urge you to write and call your representatives as soon as possible! Let them know this ruling simply cannot stand.

Betsy

18 comments:

Karl Schwartz said...

Dear Betsy,

I want to say how thankful I am that you are speaking up and informing the lymphoma community about this shameful CMS ruling ... after all, you have already benefited from radioimmunotherapy and are therefore acting mainly on behalf of other patients, present and future.

So, again, thank you for your conscientious and eloquent stance on behalf of us all.

TL Hines said...

I, too, am thankful for RIT. After being diagnosed with Follicular Lymphoma in May of 2007, and after doing extensive research, I decided the best option for me was Bexxar--which I received in September/October of this year. I don't know results yet, but after comparing the treatment with many people I've met going through chemotherapy, I can say RIT is much more easy to tolerate, and has few side effects. I've chronicled my own treatment journey at my lymphoma blog. Like you, it makes me ill to think radioimmunotherapy treatments--potential cures--may cease to exist because of faulty reimbursement data.

kkimmies said...

I am a LYMPHOMA patient. i do not look forward to my death by this ugly disease but if the CMS votes down the changes for BEXXAR and ZEVALIN. this will write my death sentence as well as thousands more. this bill must be passed.

kathy nordquist
kingman, az

Anonymous said...

Shame on those in our government who are basically telling lymphoma patients that they will just have to die because the cost of RIT is just too expensive. Medicare funding for cancer drugs has already been cut ... cutting RIT will be just another notch in all of our headstones and another dollar that lines their pockets. I can't believe more people aren't adamantly demanding our right to treatment, no matter what the cost. THIS IS AMERICA!

Anonymous said...

hi betsy,
i too am a lymphoma patient.
in a watch and wait mode right now, but have looked into RIT as an option when that time comes.
the possibility of that option being taken away from me is disturbing.
many other people know much more about RIT and what it can to for us, but to those that have this decision in their hands, i ask that you please not take away the hope of those of us suffering from this disease.
thank you,
eric elya
eelya1@yahoo.com

Anonymous said...

I am a 54 year old female. DX May 06.
Two Oncologist sent me home to Wait & Watch. Without RIT-I may be given a death sentence.

Lora Beckwith said...

I want to take this opportunity to thank Betsy de Parry for her tireless work on behalf of those of us with non-Hodgkin's Lymphoma, especially those who are anticipating the need for Bexxar as I am.

A recent CT scan has revealed that my NHL is no longer stable. Nodes have increased in size and within 3 or 4 months, my oncologist thinks that there is a strong possibility that I will need to begin treatment. However, due to a recent diagnosis of Parkinson's disease, my physician has ruled out chemo therapy and has suggested that Bexxar or Zevalin would be the preferred treatment for me. Now it appears as though
that choice will not be available to me. Now these drugs are out of my reach and I am frightened about what the future holds for me. I've got 9 grandchildren that I want to be around for. They need me as much as I need them.

My hopes are riding on the great good sense of the legislators who can reverse this ruling. I hope they'll give me a chance.

Thank you again, Betsy for all that you are doing to provide us help and hope

Rebecca Stoddart said...

Thank you, Betsy, for fighting this fight; as a fellow RIT recipient, I want this treatment option to be available to my fellow lymphoma warriors, too. I have been blessed with a 2 yr. + remission after receiving Zevalin in July 2005, and am convinced that chemotherapy would have not given me the same results.
Please, if you haven't already contacted your senators and congress reps, please do so today! Ask them to vote to overturn the CMS ruling. People's lives are at stake. Tell them, too, that we are watching, we're citizens who vote, and we're counting on them to do right by all Americans diagnosed now and in the future with cancer.
Thank you again, Betsy, for raising attention to this disgraceful decision against all cancer patients, and for your passionate efforts for all of us.

Best,
Rebecca Stoddart
lymphoma survivor
Granger, IN

Carlos ("Carl") said...

I was diagnosed with stage III, B-cell, diffuse mixed large-and-small-cell NHL in December of 2005, and began R-CHOP chemotherapy soon after. After 6 treatments concluding in May, 2006, I was in remission, but that ended in March of 2007. Follow-up scans revealed that I have enlarged lymph nodes, and a needle biopsy confirmed that it is NHL once again.

Because my particular form of the disease is now follicular (the larger, aggressive cells have not returned so far), and the cancer appears to be progressing slowly, my oncologist's advice (confirmed by a lymphoma specialist at Memorial Sloan-Kettering Cancer Center in New York City) is to pursue a watch-and-wait approach. My most recent scan indicates that the cancer is stable.

Although that is encouraging news in the short term, my doctor tells me it's only a matter of time before the cancer continues to grow. Eventually, once my affected lymph nodes grow large enough to treat, or once I start having symptoms, it will be time to pursue another round of treatment.

One option I'm considering, for when that time comes, is a stem-cell transplant. I've been in conversation with transplant and lymphoma specialists at the Hackensack University Medical Center her in New Jersey, preparing for that eventuality.

Another option I would like to consider is RIT. Because the sort of stem-cell transplant I would need is risky (10-15% fatality rate), time-consuming (3-4 months on disability) and very expensive, a treatment like RIT could offer me an option that would be both more affordable to my insurance company and myself, and less disruptive of my life. Additionally, a stem-cell transplant will only be an option if a compatible donor can be found on the national registry of bone-marrow donors (my two brothers have been tested, and are not good matches). It's conceivable that a compatible donor may not be found, which would eliminate this treatment option altogether.

If the current revisions of Medicare funding guidelines go through, however, valuable RIT medications like Bexxar and Zevalin could disappear. This would remove a proven and effective treatment that could save my life.

I am most eager to see that a way is found to preserve patients' access to these life-saving medications.

The Rev. Carlos E. Wilton, Ph.D.
Pastor, Point Pleasant Presbyterian Church
Point Pleasant Beach, NJ

Blog: "A Pastor's Cancer Diary":
http://www.cewilton.blogspot.com

Michael Seidel said...

My name is Michael Seidel and I have lymphoma. I was dx in 1999 and have had several different treatments at the Mayo Clinic in Rochester Minnesota. None of the treatments gave me a CR until I was fortunate enough to be given ZEVALIN in 2004. At this time I am still in a complete remission and consider myself alive to day because of that drug. If congress fails to fix the CMS underfunding of this drug and BEXXAR they are sending many to there death.

Michael Seidel
Herbster Wisconsin

Anonymous said...

Dear Betsy,

I just want to tell you how much I appreciate your efforts. My husband was diagnosed with Lymphoma last year. I would hope that RIT will be available to him if needed in the future. It could be the difference between life and death.

Regards,
Marianne Lorenzo
Mentor, OH

Anonymous said...

Betsy I was treated with Bexxar as part of a clinical trial for aggressive lymphoma (Bexxar + stem cell transplant). As part of the study I had a 50/50 chance of being on the Bexxar arm. I hate to think that the future of Bexxar is threatened by bureaucracy and that other people in my situation may not be able to receive this very important therapy.

Nancy from Wisconsin

Anonymous said...

Hello, Betsy, and all of us other survivors and hoping-to-be-survivors,

Having a low-grade lymphoma has meant that I've had chemotherapies 4 times and radiation therapy to my eyes when lymphoma threatened my eyesight.

Not having the option of RIT will mean that I will be at the end of the road the next time I need treatment, and it doesn't work. There are just so many therapies...

I have three children and six grandchildren. I have taught, and still teach, large numbers of children, and I hope that I can continue being there for them.

I need to know that treatments that work will be accessible when I need them.

I'm on Medicare now...does that mean I'm dispensible?

Carol Lee

sara said...

hi Betsy! havng had an agresiv lymphoma and sevrl treetmnts ttht have kept me heer, i too stand wtth yuo and all lymphoma warriors in my foot stompng tax payng VOTE CASTNG anger and say to Washngton.....SHAME ON YUO FOR TELLING ME MY LIFE IS NOT COST EFECTV!

i do not wish a blood cancer on anybdy, and sertnly thos of us who hav delt wtth it undrstand ttht ANYBDY can litrly wake up any one day and hav ther lives forevr chanjd by it. ther is no screening for THIS cancer. no preventtv. no underlyng caus ttht we can point to and say, heer! if yuo avoid THIS yuo wil be ok!

so BEWARE WASHNGTON......tmoro it cood be yuo, yuor wife, yuor husbnd, yuor child, yuor parent, yuor spouse, yuor best ffrend, yuor brotthr, yuor sistr........and yuo wil hav relizd ttht yuo hav alredy gotn rid of one of tth leading swords used in combatting tths killer. yes, killer. how many frends hav we alrdy lost on owr suprrt bord alone? 'good cancer', my foot.

We need evry tool. evry drug and treetmnt and cliniccl study. and we also keep in mind tthis afects how OTHR DISEESES AR TREETD in develpng new drugs. ther, that is all for WASHINGTON

By the way........tthis post is riddled wtth spellng errors. i refuse to use spell chek. tthis is a battl woond i ware wtth pride. from fiting lymphoma tthat invaded my brain.
good cancer, my foot. or my head.


Betsy, i'm wtth yuo!!! all the way!!!
HEERS TO HOPE!
sara from cincy ohio!

Anonymous said...

Its unbelievable that a potential cure is being taken from patients due to a calculation error of reimbursement rates.

This mistake must be fixed. Its a failure of the entire system. We need to be promoting the most cost effective and most effective treatments. No wonder health care costs so much!

Lets not let patients have cures! Lets just keep poisoning them over and over again with expensive, less effective, more toxic drugs.

This is the stupidist thing I've every heard of.

Connie Hester
conniemhester@yahoo.com

H. William said...

Hi Betsy and thanks again to SUPER Betsy for your efforts on behalf of of the 1000's us who are in line for RIT in the future.

Two years ago, I was diagnosed with follicular non-Hodgkins lymphoma. I was initially treated with CVP a type of chemotherapy and had a good short term response but the disease returned in a few months. Again I was treated with CVP and again had a short term response. This year the disease returned and I was treated with another chemotherapy agent, Fludarabine with a third positive response. I am now a candidate for Bexxar a targeted treatment, known as radioimmunotherapy (RIT) when my disease returns. My life may depend upon the availability of these new and proven drugs,

H. William Levy
Stuart, FL

RE: CMS-1392-FC, Payment for Radiopharmaceuticals

BEXXAR® Therapeutic Regimen (Tositumomab + Iodine 131 Tositumomab) and

ZEVALIN® Therapeutic Regimen (Ibritumomab Tiuxetan)

Hanne and Bill said...

Thanks to people like Super Betsy for her advocacy for all NFL patients.

Two years ago, I was diagnosed with follicular non-Hodgkins lymphoma. I was initially treated with RITUXAN, experienced an adverse reaction then was given CVP a type of chemotherapy, I had a good short term response but the disease returned in a few months. Again I was treated with CVP and again had a good short term response. This year the disease returned and I was treated with another chemotherapy agent, Fludarabine with a third positive response.

I am now a candidate for Bexxar a targeted treatment, known as radioimmunotherapy (RIT) when my disease returns with the hope of a longer remission period: years instead of months !

H. William & Caregiver Hanne
Florida

White Cats said...

Hi Betsy, I'm still hanging in there after 5.5 years with follicular NHL, a failed PBSCT in NE , radiation and then chemo again most recently. Hoping Bexxar would be my ace in the hole. Will contact my senators and governor who is a cousin by marriage. Thanks for your work. Glad you are doing well. Lena in Alabama