What needs to be done?
MSIF believes that:
A range of disease modifying therapies (DMTs) should be available, to provide people with MS the most appropriate treatment for their disease and individual circumstances.
- In particular, countries should focus advocacy efforts on improving access to high efficacy DMTs, and ensuring continuity of treatment.
- Given the widespread use of off-label DMTs, evidence-based guidance on the use of off-label DMTs should be made available to support clinical decision-making and reimbursement decisions.
Affordability of DMTs needs to be improved.
- There are already drug access schemes that allow people with MS to be treated with DMTs at reduced cost in many countries. Despite this, DMTs for MS are still too costly in many settings. The cost of DMTs should be addressed to create fair and sustainable solutions for the payers (such as governments, healthcare systems and insurance providers) as well as for the pharmaceutical industry, and others involved in the chain of healthcare provision.
- Focus should also be placed on ensuring costs for people with MS are affordable and in line with local income levels.
Unequal access to MS treatments
Early treatment with DMTs can change the course of a person’s MS and reduce future disability.
Data from the Atlas of MS shows that:
- Access to DMTs is not universal – experts in 14% of countries surveyed report having no licensed DMTs available for people with MS. This increases to 60% of African countries and 70% of low income countries.
- A quarter (25%) of countries worldwide do not use high efficacy licensed DMTs (in our analysis we classify alemtuzumab, natalizumab and ocrelizumab as high efficacy licensed DMTs) and this increases to 50% of lower middle income countries and 100% of low income countries.
- Use of off-label DMTs (therapies that have not been approved specifically for MS) is common. Experts in 87% of countries report the use of off-label drugs to treat MS.
- 72% of countries cite barriers to accessing DMTs. Globally the most common barrier is the cost to the government, healthcare system or insurance provider, which is cited by experts in around half of all reporting countries. In addition to cost, experts in low income countries often report both a lack of healthcare professionals and a lack of knowledge of DMTs amongst professionals as a barrier to accessing therapies.
- Experts in almost half of countries worldwide report problems with the continuous provision of DMT treatment, meaning that once initiated on a DMT, people with MS are unable to receive future doses without interruption or delay. The main reasons cited are an irregular supply of DMT (27% of all countries) or the delays associated with people needing to get their reimbursement renewed (19%) or the need to take regular tests to prove continued eligibility (13%).
What can you do to help?
Get the evidence
Data about MS in your country/region is a powerful tool for change. Access country-level data about MS and barriers to treatment through the Atlas of MS website, and see how your country compares with other countries in your region.
Researchers from the MENA region analysed data from the Atlas on access to DMTs, and published their findings – read more here.
If you are looking to collect data on access to DMTs in your country, we have developed a short survey that could help you. Please contact firstname.lastname@example.org to request a copy.
Get help with advocacy
Off-label treatments for MS
Off-label DMTs are often more readily available and affordable in health systems. The evidence-base for off-label treatments is different from treatments which have regulatory approval, but off-label treatments may be the only available and affordable option in low-resource settings. MSIF has reviewed off-label use of DMTs to treat MS, and made recommendations on the use of azathioprine and rituximab. You can read more about this project and access relevant resources here.
Essential medicines for MS
The WHO’s Essential Medicines List (EML) has a key role in improving access to medicines globally, yet very few medicines for neurological conditions are included in this list. The EML guides decision-makers on which DMTs should be available as a minimum in all health systems.
In 2022, MSIF applied to add three MS DMTs to the WHO’s EML, and you can read more about this project and access relevant resources here.
On July 26 2023, the WHO added three DMTs for MS onto the EML for the first time.
Three key actions needed at the national level to improve access to essential medicines are outlined in this MSJ Editorial:
- Prioritisation: Advocate for policy changes in the national health systems to recognise and prioritise MS by mobilising attention and resources.
- Standard of MS care: Ensure current and appropriate national consensus statements, treatment guidelines/algorithms and formularies are in place, and where possible, officially recognised.
- Access, funding and reimbursement: Medicines will not be accessible to pwMS unless they are registered, quality-assured, procured, made available and are affordable at the point of care.
The WHO’s 10-year plan to improve healthcare for neurological conditions
The WHO’s intersectoral global action plan (IGAP) has recommendations for improving access to treatments for neurological disorders. Find out more here about how you can use the IGAP as an advocacy tool.
Learn from others
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. You can learn from case studies, advice and tips from individuals and organisations around the world here.
In this video, Ivana Bogdanović speaks about the healthcare system in Serbia, highlighting the challenges faced by MS patients in accessing treatments. Additionally, she sheds light on the advocacy efforts of MS Platform Serbia to improve treatment access, and the positive outcomes achieved through their work.
Dr Mai Sharway and Prof Magd Zakaria present a case study from Egypt in this video. Egypt is a lower middle income country but a range of DMTs (interferon, teriflunomide, dimethyl fumarate, fingolimod, cladribine, natalizumab and ocrelizumab) are available and reimbursed by the health system. They give a detailed and practical overview of the advocacy and awareness raising work MS Care in Egypt have done alongside healthcare professionals, in order to achieve access to treatment for people with MS. Another explanation is provided by Prof Zakaria in this video.
Learn more about access to DMTs in Thailand and the main barriers to access. This video is presented by Dr Metha Apiwattanakul from the Neurological Institute of Thailand.
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 EML to advocate for People with MS.
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.