There have been many advocacy successes across the global MS movement that have resulted in improved access to MS healthcare. Equally, there have been challenges and lessons learned.
It is important to learn from one another and share our experiences. This webpage hosts case studies, advice and tips from individuals and organisations around the world. In the sections below, you can learn about different approaches to advocacy, and get inspired by the examples from the MS movement.
Create a Key Facts document for education and advocacy
Creating a document that has the key facts about MS in your country can be a useful resource to share with politicians, journalists, volunteers, and anyone who may be interested in MS.
Here is an example from MS Australia: Key facts about MS. MS Australia has given permission for MS organisations and advocates to use this as a template, so you can create your own version for your country.
To get your national statistics/information you can also generate a country factsheet through the Atlas of MS website. Choose your country from the COUNTRY OF INTEREST dropdown list, and press download to create a country-specific factsheet.
Write a petition or open letter for change
Petitions and open letters are powerful tools to help convince people to advocate for improved access to healthcare.
Petitions gather signatures to demonstrate public support for a specific issue, while open letters are written statements expressing concerns or providing recommendations. Open letters can also be used to address several issues or a broad issue that needs multiple solutions.
MS Canada has set a great example by leveraging petitions and open letters to rally the MS Community and urge the government to prioritise access to quality healthcare, advanced therapies and medications, and help create more equitable policies. Learn more about MS Canada’s advocacy, and explore the content of MS Canada’s #TakeActionForMS petitions and open letters
Develop a network of MS activists
MS activists can play a crucial role in driving change for better access to MS healthcare. Building a network of MS activists can help your organisation’s advocacy work by leveraging their collective efforts to exert greater influence on decision-makers. A strong network can facilitate the mobilisation of MS community support and participation in campaigns and events creating a sense of unity and collective action.
Explore what the National Multiple Sclerosis Society, USA does to harness the power of collective voices by creating a network of MS activists, and equipping them to take action. MS activists play a key role in driving change by telling their stories, speaking to public officials and local media to ask for support for key issues, and spreading the word on social media.
Respond to policy consultations
Governments and other decision-making organisations may hold reviews, inquiries and consultations on a topic relevant to access to healthcare. These typically encompass proposed or existing schemes, budgets, planning, frameworks, policies, medicines or treatments, research funding, prices/affordability, strategies, regulations, royal commissions, standards and/or services.
Organisations may invite written submissions to address aspects such as: the terms of reference of an inquiry; questions posed in a consultation paper; or the impact of proposed new guidelines or recommendations.
Writing a submission to the relevant government authority can be a great starting point for your organisation to engage in advocating for better access to MS treatments. This can also be a good opportunity to bring together healthcare professionals and people affected by MS to work together to advise on the submission.
MS Australia regularly contributes to policy development through written submissions, sometimes presented jointly with other relevant organisations, on key topics that may impact people affected by MS and other neurological conditions.
In relation to access to affordable treatment, MS Australia makes submissions supporting the listing of MS treatments on the Pharmaceutical Benefits Scheme (PBS), so that people with MS and their neurologists have greater choice and flexibility to access the treatment that best suits them. You can find examples of these submissions here.
Consider the role of your National Essential Medicines List
In some countries, the National Essential Medicine List plays an important role in access to treatments. It is an inventory of essential medicines that are deemed crucial for addressing the priority healthcare needs of a country’s population. It serves as a guide for healthcare providers, policymakers and regulators in determining the medicines that should be made available and affordable to all.
The following case studies describe experiences of applying to add treatments to their National Essential Medicines Lists.
Dr Shanthi Viswanathan, Clinical neurologist at Hospital Kuala Lumpur in Malaysia, shares great insights on the National Essential Medicines List in Malaysia, its potential as an advocacy tool for improving access to MS treatments, and how it has helped to bring about positive change for other conditions like Hepatitis C treatments.
Sandeep Chitnis, Honorary National Secretary of the Multiple Sclerosis Society of India (MSSI), provides valuable information in this video on the availability of DMTs in India and the challenges in accessing them. In addition, he suggests ways in which the MSSI can utilise the WHO’s Essential Medicine List to advocate for People with MS.
Learn more about access to Disease Modifying Therapies (DMTs) in Thailand and the main barriers to access, as well as their experience of applying to add DMTs to the national Essential Medicine List. This video is presented by Dr Metha Apiwattanakul from the Neurological Institute of Thailand.
We will continue to update this page with more case studies, but in the meantime, if you would like to share your experiences from efforts to improve access to MS healthcare, please contact firstname.lastname@example.org