MS Therapy Fampyra Again Not Recommended for Use in Scottish National Health System

MS Therapy Fampyra Again Not Recommended for Use in Scottish National Health System

The Scottish Medicines Consortium (SMC) issued a negative recommendation on the use of Fampyra (fampridine; marketed as Ampyra in the U.S.) in the National Health System (NHS), for the treatment of multiple sclerosis (MS) patients who have walking disabilities, citing the medicine’s poor cost-effectiveness.

After reviewing the available clinical data on Fampyra’s effectiveness, safety and economical value, and gathering healthcare professionals and patient group opinions, the SMC board, an official adviser to NHS Scotland, decided not to approve the medicine for the NHS.

“After careful consideration, SMC decided the evidence provided by the company was not strong enough to be certain that fampridine offers value for money to NHS Scotland,” the advisers said in a public summary of the decision.

This decision means that, in Scotland, this therapy should not typically be prescribed on the NHS, and other treatment options should be considered. However, in cases where a doctor believes Fampyra would benefit a certain patient, he or she can still request its prescription.

The medicine had already been rejected once by NHS Scotland in 2016, but Biogen, the company marketing the treatment, asked for a re-evaluation after submitting additional data from clinical trials and real-world studies earlier this year.

Fampyra (prolonged-release tablets of fampridine) is the first approved treatment to improve walking in adults with MS and walking disability (EDSS score between 4 and 7). It is approved in the U.S. under the brand name Ampyra, marketed by Acorda Therapeutics, and in Europe, where Biogen holds the marketing license.

The medicine is a potassium channel blocker that improves the conduction of nerve impulses. In other words, it helps signals that come from the brain to continue along damaged nerves in MS patients and command the muscles, which can help ease gait problems.

According to a related press release by the the U.K. Multiple Sclerosis Trust, Fampyra is efficient for only a part of the MS population. In clinical trials, approximately one-third of the patients had an average 25% improvement in walking speed, compared with those given placebo.

“Many people living with MS are struggling to cope with the impact the condition has on their mobility. Walking problems can affect many of the things we all take for granted,” Linden Muirhead, director of information and engagement of MS Trust, said in the release. Therefore, “even small improvements in walking can bring many benefits to someone living with MS.”

“Today’s disappointing decision means that people with MS are being left to self-fund prescriptions,” an effort that is beyond the reach of many, “especially those who are unable to work,” Muirhead said. “We know that times are tight for the NHS, but people with MS deserve access to the independence and dignity this treatment can bring.”

7 comments

  1. Gwyn Humphreys says:

    My wife suffers from primary progressive MS. She tried fampyra about 3 years ago on a programme in Devon where the first month was freely provided by Biogen. It was very effective for my wife, and we have been paying for it now privately for some years. It has made a significant difference to our lives, and appears to have significantly (apparently) slowed the rate of decline in walking ability, although it is still not very good. I did notice recently that a competitive version has now been approved by the FDA, so the price should come down in the coming months, hopefully!

  2. Crystal L. Johnson says:

    I started Ampyra in 2014 but didn’t notice the benefits, so I stopped due to the expense. On 05-2016, I scheduled my first half dose of Ocrevus, then second dose. I felt amazing. I realized the meaning of ‘brain fog”, because it went away, I also realized I was unable to walk without knee popping and dragging, even with roller blade. On office visit, November 2017, we discussed my progress. He kept asking about Ampyra. I kept on with “it didn’t help”. My Doctor pushed Ampyra on me again, instructed I take as instructed, so I did just that. I have been walking like a MS Champ since. Only time my walking is distorted now is for intake of Red Meats and A Missed dose! Ocrevus provided the ability to be functional and Ampyra and or Fampyra, acts as a huge booster. Walking normal and faster.

    The benefits of Amprya and/or Fampyra is no Cane,no Walker,no wheelchair, and one more step to Normal.

    I feel bad for the MS patients not elgible. We suffer!

    Thanks

  3. Tom Leppink says:

    The same problem in the Netherlands. The dutch health care institution (ZIN) did not approve of Fampyra either. Thanks to physical therapy i improved my walking from 5-10 meters in 2011 to 80 meters using help from walls and a walking stick in 2016.
    In april 2016 i started on Fampyra and now my walking has improved drastically to an easy 5 kilometers without any problems leaving all help at home.
    All other positive side effects like being able to cook my own dishes, improved speaking ability, conversation skills in groups. Riding my bicicle again after 8 years. Being able to use the car safely. Minimizing my heat waves due to regaining the ability to sweat again, when heating up.
    My memory is improving. Sometimes i even know the names of the people i am talking to. And i can go on for a few more pages..
    Wishing you a lot of fighting power and patience untill finally the quarter drops into the mind of decision makers! Take care

  4. Kevin Porreco says:

    I live in the United States and have been on Ampyra since the first day it was available. I have SPM S and use the scooter 100% of the time. Ampyra has improved my life significantly since taking the first dose. In terms of energy in quality of life.

  5. Eli says:

    Ampyra is now available as a generic, dalfamprine ER. Perhaps at the reduced price the Scottish health system would find it cost effective. It has been effective for me for many years and I appreciate the cost reduction of a generic.

  6. Dorothy Kane says:

    I used Ampyra for about a year before I signed up for Medicare. Once I was on Medicare my insurance wouldn’t cover any of the cost for Ampyra, no matter how many times I appealed (even to an administrative law judge). So I now get the compound, Aminopyridine and it works just as well for me, plus the cost is much, much lower. This med doesn’t help so much with walking (I have a WalkAide for that), but I certainly notice a big, big difference in my overall energy level. I know very soon when I forget to take a dose – my body is dragging, even with the WalkAide.

  7. GES Mugliston PhD. DVM, MSN says:

    Ampyra is like a miracle for me. I have a tad of vertigo for the first couple of hours after taking a dose then that goes away and I can walk like a normal person. It is so thrilling! Before Ampyra I saw my life dwindling to a wheelchair and then being bedridden. I do NOT see that now. In my once real life I was a long distance runner and swimmer, a research scientist/teacher, mother and wife and active in my community. Then gradually all that went away. I may not resume that life anymore, but at least I will not be unable to walk and in a bed 24/7. I am so grateful!

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