It cannot be right, it really can’t! People with multiple sclerosis are facing being denied access to five previously approved disease modifying therapies (DMTs). This shocking development would affect people who are newly diagnosed or those wishing to change to a different drug.
The proposal to cut the number of treatment options comes in the form of a draft recommendation from the UK’s National Institute for Health and Care Excellence (NICE). Its preliminary proposal would affect people with MS in England and Wales who receives treatment via the country’s National Health Service (NHS).
NICE’s role is to provide national guidance and advice to improve health and social care.
A consultation period on the proposed recommendation ends this Wednesday, January 24, so very little time remains for patients, doctors, caregivers and others can make their views known. To add your comment, click on this link.
NICE is to meet again on March 6 to review comments received, and discussions it has had with the drugs’ manufacturers, before it makes its final recommendation.
The good news is that, under the preliminary proposal, anyone with MS who is already on one of these treatments would be able to continue to take them.
NICE’s draft recommendation, if confirmed, would mean the cheapest drug Extavia (interferon beta-1b) would continue to be available on the NHS for new patients. But five others would no longer be treatment options because of costs.
The five medications that NICE is proposing to make unavailable to people who are newly diagnosed, or want to change their treatments, are:
- Avonex (interferon beta-1a)
- Betaferon (interferon beta-1b)
- Copaxone (glatiramer acetate)
- Plegridy (peginterferon beta-1a)
- Rebif (interferon beta-1a)
NICE says it has made the draft recommendation because it believes that while all the treatment options have a similar clinical effect, only Extavia is cost-effective.
Treatment options: a step backwards
Both the MS Society and MS Trust are ranged against the proposal.
MS Society director of external affairs Genevieve Edwards says the society doesn’t want to see patient choice limited in this way.
She said: “While people with MS already receiving these treatments can be assured they won’t have to come off them, we’re worried about what this proposal means for the future of patient choice. We have made so much progress on treatment options for people with MS, and it would be a significant step backwards if people with MS were now left with less choice and potentially no effective option.
“We want the companies who make these drugs to keep negotiating and come to a deal with NICE and NHS England so patients don’t lose out. Everyone with MS should be able to get fair and equal access to the right treatments at the right time.”
A statement from the MS Trust says it is very disappointed in the initial decision.
It says: We do not believe that NICE’s recommendations are in the best interests of people with MS or the NHS. We strongly believe that all current treatments should remain available as treatment options for all eligible patients.
“NICE has acknowledged that all six drugs are equally effective at reducing the number of relapses and slowing down disability progression. The decision to approve Extavia and not the other five drugs all comes down to cost – Extavia is the cheapest option.
“These recommendations would take away choice from people with MS. In our view, the recommendations do not take account of:
- the differences in how treatments are administered
- the diverse lifestyles of people with MS, and how different treatments suit different people
- the differing tolerances of individuals to the side effects of the drugs”
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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.
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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.