Judy’s story

My name is Judy Hays, a 75 year old retiree with a complex case of Chronic Lymphastatic Leukemia (CLL). I have been fighting this cancer since 2010 and am now on my 4th round of chemo. The drug is Venclexta (my 4th chemo drug) in pill form 4 – 100mg tablets taken at approximately the same time every day with my evening meal. The drug cost is $10,366 per month after the first $4700 co-pay, it is $518 per month. Needless to say, I hit catastrophic coverage in the first month  

Previously, I was on Imbruvica (my 3rd chemo drug), which was approximately $9,500 per month. I began taking Imbruvica in June of 2014 and thru July 2016 my out of pocket expense was approximately $16,000. In July of 2016, I applied for a grant through Patient Access Network Foundation for payment of my co-pay amounts and received a grant. I have applied and received the co-pay grant since then applying every year. The grant is a specific amount and when I reach that amount, then I am responsible for the co-pay.  

I have Highmark insurance which is provided thru PSER’s (Public School Employees’ Retirement System) and I cannot afford to change my coverage, because the other coverage UPMC and Aetna’s co-pays are so high. For example, all my doctors and specialists are with AHN with the exception of my oncologist (UPMC), if I changed my coverage to UPMC all my doctors and testing would have to be affiliates of UPMC. If I went to Aetna my co-pays for specialists would go from $15 to $40 and each scan would be $200. I cannot afford to change carriers and will have to hope and pray that my new oncologists will continue to keep me alive. I am a very busy lady, a Master Gardener, a member of the Garden Club, Civic Club, sing in the Church choir, Maintenance Financial Secretary for our Church and am the care giver to my husband Dave who has had MS for 25 years.  Since being diagnosed in 2010, I have had UPMC oncology handle my case with the exception of one year with Dr. Rossetti at West Penn. Dr. Rossetti is now with UPMC and I see him at the Hillman Center. I am 75 years old and living on a fixed income. I can’t see how UPMC cannot provide care for Highmark Medicare patients when Highmark is willing to pay out-of-network coverage, but UPMC will not accept this and makes the Medicare patient pay out of pocket before treatment. Such a very sad situation. I feel like I am being held hostage.