Today the World Health Organization (WHO) added three disease modifying-therapies (DMTs) for multiple sclerosis (MS) onto its Essential Medicines List for the first time.
Addressing the global MS movement, Prof Mai Sharawy, Chair of the Board of Trustees of the MS International Federation (MSIF), highlights the positive impact of the WHO’s decision and acknowledges the efforts made by member organisations and many others.
‘The inclusion of three disease-modifying therapies for MS in the essential medicines list (EML) by the World Health Organization (WHO) is a momentous decision that underscores pressing health challenges faced by people with MS and their carers worldwide and especially in countries where access to disease-modifying therapies is often limited or unavailable as shown in the Atlas of MS. ’
‘This inclusion will facilitate the procurement, availability, and affordability of these medicines and ultimately improve the health outcomes and quality of life of people with MS around the world. This achievement would not have been possible without the concerted and tireless efforts of MSIF member organizations, healthcare professionals, researchers in TRIMs and neurological organizations, people with MS, and dedicated individuals who worked together as a great team committed to improving global health.’
A landmark decision
With this landmark decision, the WHO acknowledges the critical importance of making MS treatments available in all health systems at all times. It is a significant moment in the history of MS, marking a crucial step towards improving access to MS treatments for people living with MS, particularly those in low- and middle-income countries or low-resource settings, who face significant barriers to accessing MS treatments like Sanae from Morocco.
Sanae, 40, was diagnosed with MS when she was 26 years old. She was single and at the start of her career and had just taken on a mortgage.
‘I was diagnosed in 2008 but in fact I started getting symptoms in 2000. I started to get blurry vision but at that time I was preparing for my diploma and I was working too so I used to start my day at 8:00am and finish at midnight or 1:00am so I did not worry. Many years passed and the symptoms were not present all the time but rather came and went. After seven years I started having a hard time walking and my arm also started feeling heavy. I used to do a lot of sports, so it was very obvious to me that something was wrong. Initially I went to see a rheumatologist, but he referred me to a neurologist.’
Sanae’s life took an unexpected turn when she was diagnosed with MS.
‘I was devastated. I saw my whole career diminishing. The financial resources did not exist to support it. Back at that time, I had just bought my house and after paying my mortgage instalment I was only left with 400 MAD ($35) or 500 MAD ($45) a month. To even get my diagnosis I had to borrow money from others. I did not have enough money to get treatment. However, the neurologist told me the relapse was mild, but it was going to become more serious. I understood her message, so I tried to start my treatment although I did not have the means to support it.’
With the support of her employers, family and a local charity, Sanae was able to start taking a DMT to manage the disease. However, after 19 months the funding ran out and she was left without treatment as she could not afford the high price of the DMT. Now, 14 years on, she is taking the cheapest MS DMT available in Morocco, azathioprine, which is only recommended when no other options exist and the alternative is no treatment.
A baseline of care
The three treatments added onto WHO Essential Medicines List are rituximab, cladribine and glatiramer acetate. MSIF and its members stress that the three medicines listed provide a baseline of care but are not the only ones that are effective and important for the treatment of MS. As this is the first time that MS treatments are included, a new section has been created on the list to emphasise the importance of treatments for MS.
The WHO’s Essential Medicines List is an internationally recognised set of selected medicines to help countries choose how to treat their priority health needs. Countries frequently use the list to develop their own national lists of essential medicines.
Towards a better access to DMTs
The inclusion of MS treatments on the list sends a powerful message to governments and regulators around the world that MS treatments are safe and effective, and they should be made available to those who could benefit from them. Although these treatments represent a highly prioritised selection of the DMTs that are currently used to treat MS, this decision lays the foundations for better access to all DMTs around the world.
Effective treatments are crucial to help people with MS, slowing the accumulation of disability, reducing the number of relapses and maintaining independence. Access to a range of DMTs can help people with MS maintain economic productivity and actively contribute to society. MS is a complex disease and it is important that different DMTs are made available to suit the different needs amongst the MS population in a country.
A moment to celebrate
Together with its members, MSIF has been advocating for the inclusion of MS treatments on the Essential Medicines List. The application was made with the help of two independent panels and endorsed by 15 organisations, including all regional MS research and clinical networks (TRIMS), regional neurological academies and the World Federation of Neurology.
This is a great moment for the MS community to celebrate this major step forward for all people with and affected by MS around the world and is a testament to the power of international collaboration. Peer Baneke, Chief Executive Officer of the MS International Federation said:
‘This decision is a major milestone for people affected by MS everywhere. We are delighted that the WHO Expert Committee has recognised the importance of including MS treatments on the Essential Medicines List. It is vital for people with MS to get the right treatment at the right time. MSIF and its member organisations around the world believe that the provision of the types of DMT represented by those on the list is the minimum for adequate MS care. Every country now needs to ensure people with MS can access a range of MS treatments at all times.’
Global demand for accessible MS treatments
There is unequal access to MS treatments globally, with high efficacy treatments particularly poorly available. The main barriers for access – as identified in the Atlas of MS – are the cost of treatment to the individual, government, healthcare system, or insurance provider. There is global consensus that a range of MS treatments should be available in all health systems at all times.
MSIF and its members will now strive to work with governments, industry, healthcare providers and patient organisations around the world to make affordable access to the best available treatments and care for people affected by MS a reality.
As the global MS community unites to advocate for change, it is imperative that every country now needs to ensure people with MS can access a range of MS treatments at all times.