April 24, 2019 Blogs

We had to empty my retirement fund.

My name is Judy and I am from St. John, Indiana. I am in my early 60s and I work in the medical field. In 2007 I was diagnosed with chronic lymphocytic leukemia (CLL/SLL) and was put on the recommended treatment called FCR, the R being a medication called Rituxan.

My insurance company denied Rituxan at first, so my out of pocket expenses were over $90,000 for six months. We ended up taking out loans to help cover the price and had to empty out my entire retirement fund to pay for health care costs. The therapy was successful, but it came at a massive cost.

After being in remission for five years, I started clinical trials. In 2017 I was prescribed Idelalisib and my monthly out of pocket for that drug was $4,000 a month –– in addition to my infusion chemo.

Although both my husband and I work full time, this cost was unsustainable to the point that my son created a GoFundme page to help offset the financial burden. The amount raised helped out with 3 months worth of chemotherapy, but after 10 months of being on Idelalisib I could no longer afford the medication.

Drug prices affect everyone, either directly or indirectly. My son should not have had to face the stress of having to fundraise for my health care, and no one should have to pay $4,000 out of pocket for their medication.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.