What is the objective of the MS-blog Charity?
To enable Barts-MS to undertake hard-to-fund MS research projects.
Our first key objective is to enable every person with MS access to effective disease-modifying therapies (DMT), regardless of their disability and their economic background.
Evidence suggests that DMT:
- Should be started as early as possible
- Is effective in many pwMS even at a more advanced stage of their disease
Many pwMS now have access to effective DMT. However, two important groups are excluded:
- pwMS with a high level of disability, for example, wheelchair users
- pwMS at any stage of their disease who are typically living in lower and middle-income countries (LMIC) or have poor access to DMT because they are not covered by healthcare insurance.
Do we need yet another MS charity?
Both in places where healthcare isn’t readily available and for patients who have more disabilities in a system where access to treatment is limited after a certain level of progression, the cost of DMT represents a significant hurdle to people with MS.
The use of ‘off-label’ drugs has the potential to radically reduce the problem of access, however, doctors are often either not aware of these drugs or they may be concerned about their use in strongly guideline-driven healthcare environments.
Some doctors are also concerned about the evidence base and their personal risk of litigation in case of adverse effects.
Funds to support proof-of-concept studies, as well as larger clinical trials, are limited as off-label DMT candidates are generic drugs, i.e. off-patent, with only minor – if any – incentives for drug companies to engage.
Several MS charities provide research grants, however do not specifically address the need to focus on the clinical advancement and availability of DMT for ALL pwMS.
What will MS-blog Charity do?
The Charity intends to:
- raise awareness of the current situation, restricting treatment for those with more advanced MS
- support the development of new DMT
- help to generate the required evidence to support the use of these DMT and existing treatments
The Charity will therefore raise funds to:
- Support pilot studies into promising new DMT and
- Get the word out to patients and practitioners alike that we urgently need both investment in new treatments and a decisive strategy to make DMT more widely available.
MS-blog Charity will tie together and support several themes many of you are familiar with, including our initiatives #ThinkHand, Off Label prescribing, Clinic Speak, the Charcot Project and CHARIOT-MS.
Please note MS-blog Charity is not a stand-alone charity, but a dedicated fund held by Queen Mary University of London, which has charitable status. We chose this solution – rather than starting a charity from scratch – to keep any associated administrative cost at a minimum. Indeed, they are currently zero, i.e. 100% of donations to the MS-Blog will go towards the objectives outlined above.