Voices Across America

I Deserve to Be Heard — and to Afford My Medication

Lisa

State: Louisiana
Congressional District:

Diseases

Cancer

Issues and Challenges

Lisa has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Discrimination (nonmedical), Financial Assistance, Medical Discrimination

My Story

Some doctors need to spend time listening to their patients. The doctor is an expert in their field of practice, but the patients are the experts when it comes to their bodies. I went for a consultation to get a stem cell transplant. I had done my research and was very prepared for the consultation. The doctor insulted me because I was asking questions about the procedure. He said, "Well, I see that you are the expert in the field." I said, "No, you are. I am just very prepared because this procedure is going to impact me." I informed him that if I did move forward, he would certainly not be performing the stem cell transplant.

The cost of medication and copayments are both astronomical. I was without my Revlimid cancer medication for four months, trying to navigate agencies that would provide me with grant money to pay for the medication and copayments. Living with cancer is stressful enough, so please imagine having a terminal illness and not being able to afford the medication or pay the copayment. Do you think that is not stressful? Well, it is extremely stressful for someone who has lived that experience.

My Motivation and Inspiration

The motivation is to help doctors understand that they must respect their patients and listen to what they say.

The motivation behind being an advocate for lowering the cost of medication and copayments is that patients can't afford the cost of medication and copayments in the U.S.