Who Are Patient Assistance Programs For?
In recent years, as I have been taking biologics for my rheumatoid arthritis, I’ve participated in various patient assistance programs. My experiences have left me questioning—who are these programs for?
The pharmaceutical companies that make the two biologics drugs I have tried both supplied patient assistance programs, where a nurse called me up to brief me on the drug, the injector, and continue follow up calls to check in. As I started, it was useful to be given this kind of information.
But I have to be honest that I think visiting the nurse in person at my rheumatologist for the injection training and later watching a video for the second drug’s injection instructions were truly the most helpful as far as mechanics went. While I appreciated the information about the drug, I had many conversations over months with my doctor and felt I didn’t need what the company provided. Additionally, I definitely trusted the expertise and knowledge of my doctor over any marketing materials.
The nurses would call me periodically and I may have spoken with them two or three times. But it just felt like I was rehashing all the details that my doctor already knew. I found myself either dodging their calls or missing them as they usually called during work hours. No matter how often I explained that I worked and wasn’t typically available 9 to 5, that’s when they would call.
I think part of the problem was me. I’ve been living with my condition for nearly 40 years and frequently felt that I knew more than the nurses! While the friendly nurse was trying to be helpful, there wasn’t anything new that they could help me with on coping with my RA.
Perhaps the strangest patient assistance program I experienced was through my health insurance. Suddenly they started sending me pamphlets about living with rheumatoid arthritis and a nurse called several times to offer assistance. It was like they just discovered I had been diagnosed! The information they sent was fine, but basic—certainly not useful for someone who has severe damage and has lived with it since age 2. I tried to explain this nicely to a nurse that called, then never heard from them again.
Don’t get me wrong. I like the concept of patient assistance programs, I just get the feeling that they don’t know what they are doing. For example, the nurses affiliated with the pharmaceutical companies said to call them any time, day or night, if I should have a fever, other side effects, or questions about the drug. But my feeling is that if I should get ill or have something strange happen, it is best to call my own doctor who knows me best or head to the emergency room (if I’m experiencing something severe or dangerous).
The way these programs are currently structured are best for people with a new diagnosis or starting a new drug. They really are not prepared for helping people to manage a lifelong chronic condition that can vary in severity or periodically flare. For this purpose, seems to me that communities like RheumatoidArthritis.net provide much more actual assistance for patients that can make a difference in daily lives and provide ongoing support as the condition develops.
I’m really not sure what purpose these programs serve, but would be interested in hearing from others if they have found the patient assistance programs useful. It is possible it could be a liability thing, to help pharmaceutical companies prevent or quickly resolve any issues. For my health insurance, I think they are trying to minimize costs through the idea of helping people self-manage their chronic illnesses. This is a good idea, but my having RA so long and managing on my own really means they were barking up the wrong tree with me and had the data points to know better.