- I signed the MS Society’s petition. Did you?
- I penned and managed to get over 90 HCPs to sign an open letter to Professor Dame Sally Davies in the Department of Health (see below).
- I did an MS Reporters interview with Rachel Horne from Shift.MS. Amazingly these have had more than 10K views in just three weeks (see below). It is the first interview/video I have done that has gone viral. It shows you the power of social networks.
- I have helped set-up an MS Academy meeting in early November to discuss variance and inequality in relation to MS Service provision in the NHS. I have little doubt the plight of PPMSers will high on the agenda. The meeting is now fully subscribed.
- I am putting to together a group of activated PPMSers to brain-storm, what to do next. I think we need to personalise it, i.e. to get individual stories out there about PPMSers who have been and will be disadvantaged by not having access to treatment. If you want to get involved please drop me an email (bartsmsblog(at)gmail.com).
Professor Dame Sally Davies
Chief Medical Officer
Department of Health
Room 114, Richmond House
London SW1A 2NS
24 September 2018
Dear Dame Sally
Ocrelizumab for the Treatment of Primary Progressive Multiple Sclerosis
We are writing to you as concerned healthcare professionals for help. We are neurologists, nurse specialists and allied healthcare professionals who specialise in multiple sclerosis (MS). Although patients with the relapsing-remitting type of MS have access to many disease-modifying treatments no treatments until now have been licensed for those with the primary progressive type of MS (PPMS). In its final appraisal document [FAD ID938] NICE has not recommended the first available licensed treatment ocrelizumab, for treating early PPMS.
The problem with NICE’s appraisal determination (FAD) is that the price for ocrelizumab had already been set for treating relapsing-remitting MS (RRMS, FAD TA533), but this price was considered not cost-effective for the treatment of PPMS based on its efficacy in the PPMS trial. As there are currently no licensed treatments for PPMS ocrelizumab had to be compared with best supportive care or no treatment. In comparison, when NICE appraised ocrelizumab for RRMS it was compared to all the other licensed disease-modifying therapies (DMTs).
We have been told that Roche had then agreed to lower the price for ocrelizumab so that it would be cost-effective for the PPMS indication. If this was accepted it would mean ocrelizumab having two NHS prices, a higher price for the treatment of RRMS and a lower price for the treatment of PPMS. Apparently, the Department of Health is not prepared to support differential pricing, despite having a mechanism with the blueteq system for tracking prescribing for the PPMS and RRMS indications.
NICE’s decision in association with the Department of Health’s Rules means an irrational decision has been made. It also creates inequity. People with PPMS who are prepared to pay for ocrelizumab privately will be able to receive the therapy, potentially in an NHS institution. Similarly, those who are fortunate may be able to move and be treated with ocrelizumab in another country where ocrelizumab is covered for the PPMS indication as other UK and EU countries have different decision-making processes.
We would appreciate it if you could review the Department of Health’s position on differential pricing as a solution for people with PPMS being treated with ocrelizumab? We are convinced that there must be a solution that will allow our patients with PPMS to be appropriately treated under the NHS.
Despite the pharmaceutical company conceding to the NICE target and the drug receiving a European license, it is now the government who is preventing patients receiving appropriate treatment for their MS simply due to a rule, arguably an irrational rule, created by the Department of Health.
We look forward to hearing from you.
Concerned NHS HCPs.