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Although this article is about leukemia, it probably applies to brain tumors as well. It says that more than half of the patients with a huge copay do not fill their prescription for cancer drugs. This is the reason I started our copayment assistance program. My dad had a big copayment for his GBM drugs and he refused to fill it due to the cost. He had the money but knew he would never work again and didn't want to deplete his life savings and leave my mom broke. The only way I could get him to take the drugs was for me to pay for it and then tell him I got free samples.
As the article states, some Medicare plans have a $4,700 catastrophic limit, after which they are covered in full. So I set up the Musella Foundation Copayment Assistance program to award up to $5,000 per patient per year to help pay the copayments for Temodar, Avastin, Gliadel and Optune. Usually after they use this up, the rest of the year is free to them. Many times I get frantic calls from nurses saying their gbm patient is due to start radiation today and can't afford the copay for the Temodar. If they delay the start or forego Temodar completely, they will not live as long. Medicare's payment system is resulting in people dying prematurely. In many cases we were able to get the grant approved within 15 minutes of receiving the application, allowing these patients to get the drug in time. It is really a life saving program. We have awarded over $3.6 million to patients so far! Unfortunately, we are now out of funding so the program is closed to new patients while we try to raise more money. We do not divert money from our brain tumor research grants program to use for the copayments. The only funds we can use for the copayment program are those that are specifically dedicated to this program. When making a donation on our website at https://virtualtrials.com/donate8.cfm there is a checkbox at the bottom asking where we should use the funds. Copayment Assistance is one of the choices. When people name our organization for memorial donations, we allow the family to select how the donations are used.