Why sign up to a patient support program?

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When disease-modifying therapies (DMTs) first became available in the 1990s for the treatment of multiple sclerosis, pharmaceutical companies set up patient support programs (PSPs) that were specific to their products. In part, these programs were meant to address the need for injection training – all of the DMTs at that time were administered by self-injection. But PSPs also provided an opportunity to educate people about MS, explain why medications were needed to control the disease process, and to encourage people to stay on their drug regimen.

Those efforts appear to have been largely successful. A Canadian analysis for the period 1996-2014 found people with MS were more likely to stick to their medication plan than people with rheumatoid arthritis, epilepsy or Parkinson’s disease (Evans and colleagues. BMJ Open 2021;11:e043930). The researchers speculated that the main difference in treatment adherence was the support programs provided for people taking MS medications.

A recent German study reported similar results. (Lenz & Harms. Adv Ther 2020;37:2999-3009). Over a 6-month period, people with MS who had enrolled in a PSP had a higher rate of taking their medication (93%) compared to those who were not PSP members (62%). However, the study also found that awareness of PSPs was low and few people signed up for the service.

So what does a PSP offer?

When a DMT is first prescribed, a person can register with the PSP for that product. That enables the person to access the toll-free telephone support line or log onto the PSP’s website. The people answering the phone are typically nurses or other healthcare professionals who are there to provide private one-on-one counselling. The advisors can educate you about MS, explain how the disease is affecting your body and offer ideas to live more healthily. They will also provide information about your MS drug and how to take it, e.g. for people taking an injectable drug, they can talk you through the injection by phone or on a Zoom call.

If you need additional tests (e.g. blood tests or eye exams), the PSP can set up those appointments. They can also help you find and access a local infusion centre or connect you to other resources in your community. An advisor can call you to remind you about your medication visits or other appointments. Some programs will also arrange home delivery of your medication. PSPs also have on offer various resources (e.g. booklets, wellness programs) and tools to track your symptoms or tests results.

Perhaps the most useful PSP service is reimbursement counselling. MS medications are expensive and PSPs will navigate you through the thickets of private insurers or government drug programs. They can determine your insurance eligibility, help you obtain authorization, make a few phone calls on your behalf and provide financial support with your co-payment if you need it. Some programs will also provide free drug until your insurer signs off on your application.

Receiving personalized attention for your health and medication needs can be very helpful, especially as those needs evolve during the course of MS. A German survey of people accessing a PSP found that using the telephone hotline or talking to a nurse over the phone increased a person’s quality of life substantially (Kohlmann and colleagues. J Neurosci Nurs 2013;45:E3-14).

A PSP is not a substitute for the care and advice provided by your neurologist, MS nurse or clinic – they are the ones who are directly responsible for the healthcare you receive and they are in the best position to answer your questions. However, a PSP is an added resource at your disposal that can assist you in meeting some of the daily challenges of living with MS.

Give us your feedback on your PSP experiences by completing the My Voice survey.

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