April 19, 2024 Blogs

Cindy’s Story

My name is Cindy and I live in Richmond, Vermont. I am working as a data analyst and researcher. I serve as the Chairperson on my union’s benefit advisory committee where I provide input to our HR office on subscriber decisions. As such, I see firsthand what the costs of healthcare and prescription medication can do to a plan, and how these costs impact premiums.

I was diagnosed with what they then called juvenile rheumatoid arthritis (RA) when I was 14 years old. This was 1971 and many of the medications available today were not even thought of back then. I was a dancer and wanted that to be my career. This insidious disease quickly squashed that career goal. Throughout my life I have tried physical therapy and acupuncture, been hospitalized, tried countless medications, and dealt with side effects that were worse than the disease. Approximately 20 years ago, I started taking my first biologic disease-modifying medication – Enbrel. While the medication worked very well, I had to stop it due to very negative and potentially harmful side effects. Since that point I have tried other biologics. I have been through periods of time where I had to discontinue most of my medications due to lung cancer. I am currently on Xeljanz which is a JAK-inhibitor. This is one of my three RA medications, and this regime is working very well to keep my RA under control.

What I have learned as a patient is that there have been amazing advances in medications to treat RA and I feel lucky to live in this time where these medications are generally safe and widely covered by insurance plans (albeit with required prior authorizations). The issue is that these medications are extremely expensive. My current medication is $5,504 a month. I am very fortunate that my insurance plan through work covers this cost after I meet my maximum out of pocket. This makes it so I can afford and have the luxury of being able to walk and generally perform the functions of daily living, and prevent deformities of joints, along with reducing pain and inflammation. The issue is that this large cost adds up and with many patients taking such medications for many diseases, the cost to our insurance plan is staggering. We are facing our third year of double-digit premium increases. These increases outpace inflation and any cost-of-living salary adjustments by our employer. This is unsustainable and people will not be able to afford the premiums in the near future.

I feel like I cannot even consider retirement as I know my costs per month for my medication would be much higher than they are currently under my work plan. I am at full retirement age but have not made any plans to retire due to these expensive medications and this is why I am also involved in patient advocacy.


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