Anatomy of a patient-centric patient support program
October 13, 2018
In April 2017, Erin Truax was diagnosed with multiple sclerosis (MS) and her life changed forever. She recently sat down with us to share what it’s like to be part of the specialty drug ecosystem and give us a close-up view of her PSP.
Q: Tell us about your MS journey.
In addition to shock and confusion, I felt embarrassed when I got the diagnosis. I guess I was concerned with how people would view me. At the same time, I resolved to keep living, and the following week I went on a planned trip to the Arctic. I’ve continued to live life to the fullest, and on good days I forget about my MS. On bad days, the support of my family and friends—and let’s not forget my dog!—reminds me that everything is going to be OK.
Q: Tell us about your experience with MS medication.
I’m taking an injected medication, which decreases the frequency of flares and delays the progression of the disease. It’s proven to be the right drug for me.
Q: Does the medication have a PSP and has it helped you?
Yes. The PSP provides injection equipment, a symptom diary, and even a travel cooler since the drug needs refrigeration. My primary interaction with the PSP is through “nurse Judy,” who is worth her weight in gold.
Q: Did you have any challenges accessing and paying for the medication?
Access was seamless, and I’ve been able to pay for it through a combination of my work benefits package and support from the manufacturer. Judy helped me with everything: whom to call, all the paperwork, who would pay for what. Needless to say, this was invaluable. The pharma company gave me one month of free drug, so I could get started right away.
Q: How has she helped you?
Judy came to my condo and taught me and my sister to do injections, tailoring her instructions to our learning styles. The medication comes with a machine that automates injection, which makes things a lot easier. And the needles don’t hurt that much! Judy also calls me if she thinks I may be out of needles or just to see how I’m doing. She’s gotten to know me as an individual.
Q: Do you think your PSP is “patient-centric”? What about the industry in general?
Absolutely. Judy has been a friend all the way, and knowing she’s there has been a huge comfort to me. If other people are getting the same kind of treatment as I’m getting with Judy, I’d say the industry is definitely on the right track.
Q: Is there anything else you’d like to see in a PSP?
I think an online chat group would be great, and perhaps videos of patient experiences, such as experiences with needles. Before starting my medication, I looked for such videos online and found them enormously helpful.
Q: Any thoughts you’d like to impart to specialty drug manufacturers?
I would encourage industry to dig deeper to get the “real goods” from patients. Industry has an incredible opportunity to use real people like me, with our real-life experiences, to gain insight. If you want to know what’s working and not working, have those conversations with patients. Honest feedback is powerful!
Q: Any final thoughts for our readers?
I’m inspired by the work that’s being done to support MS. I was initially reluctant to talk about my experience and even avoided discussing it with my parents, but now believe that the more people talk and share, the more and better research will happen, so we’ll eventually find a cure.
Consult the MS Society of Canada website to learn more about multiple sclerosis.