In 2008, my primary doctor noticed that my white blood cells were high (12,000 range) and referred me to a hematologist. The hematologist decided to "wait and see" for a while. From 2008 to 2018, we watched as my white cells slowly grew from 12,000 to 207,000. The oncologist then prescribed an eight-hour infusion of Rituxan. As I sat in the recliner chair with a needle in arm, I got several violent reactions from the Rituxan and they pulled out the needle. The doctor told me that I needed a drug called Imbruvica (Ibutrinib). I was told it was very expensive and I was left to my own devices.
After trying unsuccessfully to get the drug through the manufacturer, I awoke one night with a whisper in my ear: "Chris, you are a veteran..." I wrote a letter to the pharmacy at my local V.A. hospital. The doctor at the pharmacy got my letter and arranged for me to see the V.A. oncologist. Only prescriptions written by a V.A. doctor can be filled at the V.A. pharmacy. The V.A. oncologist had me go to the V.A. blood lab to prove that I indeed had CLL. After about two weeks, a UPS truck came to my door with a 28-day supply of Imbruvica, and I was charged only $11.
Some changes have been made, and I now receive a 30-day supply each month, but still the cost is just $11.00. I am being "thanked for my service" in a way I never imagined! This treatment has reduced my white blood cells to about 8,100, and they have stayed in that range for about a year. I am so blessed.
In August, 2019, at age 78, I had to quit my part-time job as a bus driver for a retirement home. I needed that job to balance the family budget each month, because our two Social Security checks and three annuity checks (which are very small) didn't produce enough income to meet our bills. About six months later, the oncology clinic I use brought on a full-time social worker, and I was advised to see her. During our appointment, she got on the phone with the The Leukemia and Lymphoma Society (LLS) Co-Pay Assistance Program, and about 20 minutes later, she almost fully completed the grant application process including getting paperwork from my doctor faxed to LLS.
I was accepted into the program for year 2020 and renewed for 2021 and 2022. The check I get from LLS each month is about equal to what I made as a part-time bus driver. If it weren't for the LLS Co-Pay Assistance Program, I would have to start using some of our savings each month to pay all the bills. That would be exhausted in about 12 to 18 months. LLS Co-Pay Assistance Program is making it possible for my wife and I to continue living in our home and keep the monthly bills paid on time.
The peace of mind that this gives us is immeasurable. Thank you!
Chris
Chronic lymphocytic leukemia (CLL)
