Patient support programs – what readers think
Over the summer, MSology surveyed its readers about their experiences with patient support programs (PSPs) (see Why sign up to a patient support program, MSology, July 29, 2021). PSPs are operated by drug manufacturers and have a long history. The first ones were set up over 20 years ago primarily to teach people how to self-inject, since all of the disease-modifying therapies were injectable at that time; encourage people to keep taking their medication; and to educate them about multiple sclerosis.
PSPs have evolved over the years. Most disease-modifying therapies (DMTs) used for MS are no longer injectable, so injection training plays a lesser role. At the time time, drugs have become more expensive and require more safety monitoring, so PSPs have taken on two key roles. They provide people with financial assistance, such as helping them fill out forms or, in some cases, providing “bridging” treatment until reimbursement is approved. Secondly, they help to schedule appointments for blood work, eye exams, and other components of the safety monitoring program.
The MSology survey revealed some surprising aspects of PSP use. In total there were 22 respondents – a low rate of response to an MSology survey, which may in itself indicate a low level of engagement with PSPs. The highest proportion of respondents (41%) lived in Ontario. A total of 68% of people were aged 50 or older; 18% were aged 40-49; and 14% were aged 30-39 years.
Overall, 20 of 22 people (91%) were currently taking a DMT. Among those on therapy, 50% were taking an injectable medication (Copaxone/Glatect, Avonex, Plegridy or Rebif); and 15% were taking a front-line oral therapy (Tecfidera or Aubagio). About one-third were taking a higher-efficacy therapy (Ocrevus, Mavenclad or Gilenya).
The high proportion of respondents taking an injectable medication suggests that PSPs have not outgrown their roots in many cases. In fact, many respondents stated that injection training was the main role of their PSP. People also found the PSP was useful for obtaining injection-related supplies, such as autoinjectors and sharps containers. Call centre nurses were also able to advise on medication-related side effects, schedule appointments (e.g. eye exams), and provide emotional support. One respondent called the PSP during a relapse because the service was easier to reach than a neurologist.
The overall awareness of the PSP was modest; the average rating was 3.14 out of 5 (5 being the highest). Most people found out about their PSP from their MS clinic or doctor/nurse; two people heard about their PSP from social media. A majority of respondents (86%) said they had been contacted by their PSP, and most (82%) said they had called the PSP at some point. The reasons cited for calling the PSP included questions about drug side effects, issues related to insurance/reimbursement, to obtain supplies, to schedule injection training, and questions related to COVID and/or vaccination.
Respondents generally felt that their PSP coordinated its services well with those from the MS clinic. A few people were less satisfied. One person said that the PSP knew little about them. Another commented that a PSP was not a true option: you must sign up with the program if you want that drug or if you want the testing or injection training that you need to be able to take the drug.
What would people like from their PSP?
Several people said they would like more information unrelated to their medication, such as how to cope with MS, or advice on diet and exercise. Some would like more frequent contact; others would like less. One person suggested that PSPs could help to educate family doctors about MS. Another expressed concerns about the data collected by the PSP – they wanted greater transparency about how the data would be used and how long it is kept, and wanted the option of having their file destroyed once they stopped taking the drug.
PSPs can provide another point of contact for people during a vulnerable time, but unfortunately that relationship may be limited. One person said it was nice to think that someone cared, but when she stopped taking the drug she felt she had lost her support system.
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