Fampridine in the Real World

Crayton H, Sidovar M, Wulf S, Guo A. Patient Perspectives and Experience with Dalfampridine Treatment in Multiple Sclerosis-Related Walking Impairment: The Step Together Program.
Patient. 2014 Dec. [Epub ahead of print]

BACKGROUND:Dalfampridine extended-release tablets (dalfampridine-ER; in Europe, prolonged-release fampridine, and elsewhere, fampridine modified or fampridine sustained release), 10 mg twice daily, are available for the treatment of improvement of walking in patients with multiple sclerosis, as demonstrated by an increase in walking speed. On-drug patient perspectives and experiences are valuable to understand and manage this patient population.
OBJECTIVE:The objective of this study was to examine perspectives and experiences of patients receiving dalfampridine-ER in a real-world setting.
METHODS:Step Together, an ongoing program that captures real-world patient experience with dalfampridine-ER treatment, consists of a survey administered at baseline (before dalfampridine-ER initiation) and at 30 (first follow-up) and 60 days (second follow-up) after initiation. The survey includes modified versions of the 12-item Multiple Sclerosis Walking Scale (mMSWS-12) and the Sheehan Disability Scale (mSDS) to assess walking ability and functional impairment, respectively.
RESULTS:As of September 2013, 2,248 patients participated in the baseline survey and 522 completed both follow-up surveys (completers). Among the completers, improvements in walking ability and function relative to baseline were significant at both follow-ups as measured by mMSWS-12 and mSDS scores, respectively. Notably, 69-74 % of completers at both follow-ups had improved mMSWS-12 scores, with scores greater than the range considered to be minimally clinically significant. Patients who completed the program expressed satisfaction with overall dalfampridine-ER treatment, and 69 % indicated that the survey would help them communicate better with their healthcare providers.
CONCLUSION: Results highlight the utility of patient-reported outcomes in the assessment of patient perspective and experience, providing a useful supplement to traditional objective measures used in clinical studies.

The trials indicated that about a 30-90% of people may benefit from taking fampridine for improvement in walking. The best way to determine if fampridine is of benefit is to try it. In this study of real-world MSers about two/thirds of the respondents claimed benefit.

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  • Mouse,

    Thanks. I don't believe this drug is available on the NHS – I'd like to try it. Why is it so expensive – is it particularly complicated? Are any other drugs companies looking at drugs with similar modes of action. I've been NEDA for some 7 years thanks to Alemtuzumab, but my walking suffered in early relapses – I can walk ok, but it would be great to go a bit faster when needed.

    • Why is fampryidine so expensive…..because the company thinks that MSers can afford to pay it.

      The cost of drugs bears no relation to their development and the costs are fixed on what people in the USA insurance companies will pay. They are out to maximise profit for shareholders and themselves. This means that NICE will probably never approve it because it is not considered cost-effective.ProfG could enlighten on this.

      It does not work for everyone and you but you can get a one month trial, not sure if this commits you to a private prescription, if you search on the blog there is a post on this as it is privatisation of NHS by the back door.

      ProfG will know if there are any companies making similar products

  • I was trying Fampridine about 6 months ago. At the time, my walking speed was very slow and I couldn't stand for more than 10 minutes, sometimes less.
    After the two week trial, my walking speed was twice as fast and I could/can stand for 40 minutes.
    I went back to work as a result and life is great. I love the fact that I can contribute to the household finances, teach voice and the Fampridine still works. Even better – I don't have to pay for it.
    It's a miracle drug. Well worth the 410 euros that our health care pays for AND I'm paying taxes and NI contributions.
    So, yes. It is worth it. If my knees weren't totally knackered, then I'd be running. It's a sad fact that no meniscus=no running.

  • Shameful that the NHS has deprived MSers of this drug, yet still has money to pay for IVF treatments for childless couples.

    Having a baby is not a health need. Walking is a health need.

  • Would someone (ProfG?) be able to explain why Fampridine is not considered cost effective by NICE? I really find it difficult to understand, but I do not know all the factors that are taken into consideration. From my point of view, it costs £190/month but potential savings to the state because of eg me staying in work and paying taxes, staying (relatively) healthy and not calling upon other state support (eg hospital visits) could have a bearing.

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