Latest News | Sep 15, 2020

I would become paralyzed without this treatment

My name is Tammy L. de la Cruz and I live in North Las Vegas, Nevada. I live with a rare autoimmune disorder, and to treat my condition, every week I receive Intravenous Immunoglobulin (IVIG) treatment. I would become paralyzed without this treatment, which terrifies me. 

When I first began IVIG treatment I was covered by Medicaid, so the treatment came at no cost to me. I later switched to marketplace insurance when I started receiving SSDI benefits. The cost under my new insurance increased to about $30 every three weeks when I would go to the doctors for my treatment.

In August of 2018, I began receiving Medicare benefits. I distinctly remember going for my first IVIG treatment after switching to Medicare. When I heard that the copay would be $1,491, I couldn’t believe it. That single copay would cost more than my monthly SSDI benefits. At the time I was going every three weeks for IVIG treatment, but quickly increased to once a week as my doctor suggested.

If the agency I went through to receive my treatments didn’t provide a grant to cover the cost, I simply wouldn’t be able to afford treatment. When Medicare didn’t cover the cost of my medication, I began to give up hope, thinking about what would happen without these life-changing treatments.

During that time, before I found my grant, I thought a lot about what I would lose without my treatment. I have eight grandkids and love helping them out. I volunteer with my local food pantry and with a social service agency that serves those that have intellectual and developmental disabilities. In addition, I enjoyed watching the Special Olympics and even volunteered a few times. I love coloring, reading, and up until a few months ago I attended college full time –– and thanks to my IVIG treatments, I was able to walk across the stage to get my BS in Psychology. Not being able to afford my treatment would have made these enjoyable hobbies more difficult, if not impossible, for me.

I found a grant at the 11th hour, saving myself from paralysis. I know the future of this grant funding is not guaranteed. People with illness shouldn’t have to work so hard to fund extreme drug costs; it’s cruel. 

Patients like me shouldn’t have to rely on grants to cover the cost of our treatments. We shouldn’t have to deal with the uncertainty of constantly changing costs and the concerns of what will happen if we lose access to our grant and therefore our prescriptions. No one should have to experience the feeling of hopelessness I felt when I thought I wouldn’t be able to afford the treatment I needed. It doesn’t have to be like this. We need changes to our system that make prescription drugs more affordable.