The National Institute for Health and Care Excellence (NICE) recommended five Disease Modifying Therapies (DMTs) for MS should no longer be available for new patients in England and Wales. With your help we've told NICE why we disagree with this decision.
Dozens of you got in touch to tell us what these recommendations could mean for you, and for people yet to be diagnosed with MS. We used your stories to inform our response to NICE.
This won’t affect anyone currently taking them
Everyone with MS who is on these treatments now will still be able to take them. And if you live in Scotland or Ireland this draft decision won't affect you.
Which treatments might be affected?
The draft decision would mean Extavia (interferon beta-1b) will continue to be available on the NHS for new patients.
All other beta interferons, and glatiramer acetate, will only be provided for people who are already taking them.
NICE are proposing to make the following treatments unavailable to people who are newly diagnosed or want to change treatment:
- Avonex (interferon beta-1a)
- Betaferon (interferon beta-1b)
- Copaxone (glatiramer acetate)
- Plegridy (peginterferon beta-1a)
- Rebif (interferon beta-1a)
They’ve made this recommendation because they believe all these treatments have a similar clinical effect, but only Extavia is cost-effective.
Significant step backwards
We don’t want to see patient choice limited in this way.
Genevieve Edwards, our Director of External Affairs says: “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, 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.”
Risk Sharing Scheme
These drugs were previously available under the Risk Sharing Scheme, an agreement between the Department of Health and pharmaceutical companies to provide funding for DMTs.
NICE will meet again in March to discuss the replies they have received to their recommendation and the final decision will be made over the coming months
This news story was updated on 26 January 2018 to reflect our submission to the NICE consultation.