Tom Chelius’ Testimony in Support of Senate Bill 300: The Cancer Treatment Fairness Act

Good morning Chairman Lasee and members of the Senate Committee on Insurance and Housing. Thank you for holding a public hearing today on Senate Bill 300, The Cancer Treatment Fairness Act. Today’s hearing holds so much promise for Wisconsin individuals and families suffering from cancer’s many pains and struggles – which are physical, emotional, spiritual, and financial.

I am wholeheartedly in support of this important bill, and I would like to take a couple of minutes to share my story with you, in hopes that others will someday be provided with the lifesaving resources that I have been so fortunate to obtain.

I consider myself lucky, which most people might think is odd. Not long ago, only a third of patients would live 5 years after being diagnosed with multiple myeloma, an incurable cancer of the plasma cells. Plasma cells are responsible for creating antibodies and are a vital component of the body’s immune system. I was diagnosed nearly 6 ½ years ago and am happy to say that I am currently in complete remission and am not on any myeloma treatment. This is due to breakthrough innovations, like the new oral anticancer medications.

Tom Brain Scan

The average multiple myeloma diagnosis is around age 68, but I was diagnosed at 38. I found out I had cancer after having surgery to remove a large mass from my skull. I included two MRI images of the tumor, which you can see includes the large, white area on the pictures below. This tumor ate away part of my skull, my left eye socket and part of a sinus wall. Other scans showed that I had other lesions on my spine and pelvis.

As a first line of treatment, my oncologist prescribed Revlimid™, at the time, a relatively new FDA approved medication, which cost about $7000 per month. Because of the effectiveness of Revlimid™, however, my oncologist determined that I did not need radiation treatments on the large tumor.

As a result, I was able to go back to work after a month and a half and was able to lead a normal life, socialize with my friends and not have to worry about frequent IV needle sticks. Instead, I just took a pill in the evening. After 4 months, I was in a partial remission. This was only open to me because of my insurance coverage provided to me by my employer, the Medical College of Wisconsin (MCW). My co-pay was only $20. I am lucky that my employer covers this, but so many others are not so fortunate. Many families are forced to choose between life and financial ruin.

My journey doesn’t end there. As a younger patient, my oncologist and I decided that a more aggressive treatment course was needed, with hopes of actually curing me of this cancer. I had a bone marrow transplant with my eldest brother as the donor. While my lab results say that I am in a complete remission, I currently suffer a crippling side effect of the transplant called Graft vs. Host Disease (GvHD). Unfortunately, I will likely have lasting effects of this condition for the rest of my life. My hope is that this course of treatment will no longer be necessary in the future because of new, novel drug development.

Looking to the future, the treatment of myeloma has changed. Bone marrow transplants are still performed, but there are newer FDA approved drugs available and even more in development. Research shows that these drugs often work better together when treating myeloma. These drug combinations are often at least an oral pill and IV medication. The idea is to have a “1+1 = 3” effect. Researchers are looking at genetic profiles of the cancer which may be helpful in determining which drug is more effective for which “flavor” of myeloma.

I attended a conference on myeloma recently that was held by the International Myeloma Foundation (IMF) and was uplifted by liberal use of the word “cure,” and that research is getting close to finding one. The IMF has launched a research program called the Black Swan Research Initiative™. Its purpose is specifically to find a cure to myeloma. It is my understanding that this cure will come from combinations of medications. Ultimately, access to the entire range of these anti-cancer medications, oral or IV, is vital to the treatment of myeloma. A patient will likely be on a sub-optimal treatment plan without access to oral medication.

The Cancer Treatment Fairness Act (SB 300) is vital in assuring that patients receive the best treatment for their cancer. As a member of the West Bend Area Myeloma Support Group, I have met many others who have been able to continue working during and after treatment because of oral anti-cancer medications. My support group was established and maintained with the help of the International Myeloma Foundation (IMF), the oldest and largest foundation dedicated to improving the lives of myeloma patients while working towards prevention and a cure.

As you know, if an insurance plan covers chemotherapy, SB 300 would require the plan to cover both oral and intravenous treatments equally. As my example shows, individuals without the coverage could be left with the decision between thousands of dollars of unaffordable oral anti-cancer medications, or simply choosing not to be treated as effectively – Possibly denying a patient of potential life-saving options.

On behalf of the IMF, MCW, myeloma patients and all cancer patients living in Wisconsin, I strongly urge you to please vote in favor of SB300 to ensure access to all anti-cancer medications for all cancer patients. Thank you for your time and consideration. I am available if you have any questions.

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