Access to MS treatments worldwide remains highly unequal. While research and innovation are making great strides, many people with multiple sclerosis are not benefiting from these advances. In this episode, Anne Helme, Head of Research and Access at the MS International Federation (MSIF), talks about the global challenges of treatment access, MSIF’s work to address them, and the hopes for a fairer future in MS care.
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Introduction and Personal Background
Anne, could you please introduce yourself and explain your role at the MS International Federation?
MSIF is a network of national MS patient organisations from across the world. We work together to improve the quality of life and wellbeing of everybody affected by MS and to end MS forever.
In my role, I support our member organisations to coordinate activity and collaborate on MS research initiatives – because we know that we can be more effective and accelerate progress when we work together.
I also oversee our activities in relation to improving access to MS healthcare, particularly around the evidence that’s an essential part of advocating for change. One aspect of this is the Atlas of MS – a global, open source dataset about MS across the world.
Why is a global effort to improve access to MS healthcare more important than ever today?
The number of people living with MS in the world is growing year on year, but the healthcare they have access to is not necessarily improving, even in high income countries. There can be long waits to get a diagnosis, or people are misdiagnosed – or can’t get a diagnosis at all. People with MS may not be offered the best treatment – or any treatment – for them for multiple reasons which we’ll talk about later.
Rehabilitation and symptomatic therapies can be especially hard to access even though we know how important they are for quality of life and wellbeing. Even though research and innovation continues to make brilliant progress thanks to dedicated scientists across the world, the impact of these discoveries doesn’t always make it to individuals living with MS across the world.
Access to Treatments Worldwide
In which parts of the world is access to modern MS therapies currently most limited?
72% of countries reported in the Atlas of MS that there are barriers to accessing DMTs. So this is a global problem. But – unsurprisingly there is a correlation with the income band of the country (middle and low income have more barriers). And this is emphasized when you look at access to what we categorized as high efficacy DMTs – these were not available at all in low income countries and only 50% of lower middle income countries have at least one, licensed high efficacy DMT available in the country – though this doesn’t mean the treatment is affordable for people with MS.
What are the main barriers to treatment access — cost, availability, regulatory hurdles, or lack of information?
All of them! Cost is the biggest barrier – particularly for the government or health systems, or hospitals that might be procuring the medicines. Personal cost is a big issue too. In over half of countries, people with MS (even if they have insurance) have to pay some or all of the costs of their treatment, and DMTs are expensive.
Some countries don’t have access to certain treatments because the companies don’t apply for regulatory approval or don’t supply to that particular country – if there are not many people who have an official MS diagnosis, there is not a market for DMTs.
One thing we learned was that problems with continuity of supply of DMTs was a big issue – in almost half of the countries we surveyed. This is sometimes due to interrupted supply chains, or needing to reapply for eligibility/reimbursement. For some types of medication this can be harmful eg if you get rebound effects.
Another barrier is the lack of healthcare professionals that can prescribe DMTs or monitor people for treatment – or lack of equipment needed for screening and monitoring (some treatments can only be provided if you have certain tests before and after the treatment is administered)
Lack of information is an interesting point. We know that some people choose not to take DMTs for personal reasons, but there can also be a lack of information for healthcare professionals about what treatments are available and which are most appropriate for individuals. And whilst there is growing consensus about the importance of treating with high efficacy therapies as soon as possible after diagnosis, this is not current practice everywhere.
How is the MS International Federation working to improve access to therapies, especially in low-resource settings?
Anything we’ve achieved as MSIF we’ve only done through working collaboratively – our impact is due to the work of all our member organisations and many others in the global MS community.
Our work to improve access to treatment happens at both global and national level.
At the global level, we have worked for many years to try and get MS treatments onto the WHO’s Essential Medicines List. This is important, because it shows there is global recognition that MS is a condition that should be treated. And it’s a powerful lever for advocacy at the national level.
At the national level, our MS organisations work really hard to improve access to treatment, and we have many success stories. For example, increasing the number of types of treatment that are made available in the country; getting access to the latest drugs; reducing the cost the health system has to pay for treatment; increasing the DMTs covered by certain insurance schemes….none of this is easy, but our organisations and the volunteers and advocates that work with them are very persistent.
We bring our organisations and others together regularly to share what works well and learn from each other. We also support organisations with things like advocacy training.
Practical Advice for Patients
What options do MS patients have if they live in countries where certain medications or therapies are not yet available or are unaffordable?
There are over 20 DMTs licensed for MS, and many countries do not have access to all of them. A few countries don’t have any licensed DMTs at all. And even where some DMTs are available, they can be unaffordable for the majority of people – a single dose might cost more than a month’s wages in some countries. We hear of pwMS who travel to other countries for treatment because that’s the only way they can afford it.
As part of our work to get DMTs on the WHO EML, we reviewed all the evidence for MS treatments and considered them in the context of what’s affordable and feasible in low-resource settings. So we now have recommendations for essential medicines (which goes wider than the 3 on the EML) – and I hope these can be useful for patient organisations working with HCPs to influence what gets made available in a country.
Another consideration is off-label medication. These are treatments which can be used for MS but do not have a license (not approved by regulators in the country to treat MS). Depends on the country, but sometimes off-label medications can be more affordable, and may be more available because they are already in the country being used to treat other conditions.
Looking Ahead
What developments give you hope that access to MS treatments will improve globally in the coming years?
Firstly – that we were able to get MS treatments onto the WHO EML. Because whilst this doesn’t have an instant impact, it’s part of the toolkit MS organisations can use to help advocate for better access, and we’re already seeing some successes.
Secondly – we have some treatments for MS that are becoming more available as they come off patent and generic or biosimilar forms are produced at lower costs, and become more available in different countries.
And that I know how many passionate, committed people we have in the MSIF movement that work tirelessly to bring about change. It’s the people I meet that really give me hope.
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
A unique, complicated condition, that we will only fully understand when we’re open to learning from the lived experience of people affected by MS.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
I really hope that over the next 5 years we’ll see increasing equity. We’re not going to get rid of health inequity entirely, but I hope that in 5 years’ time more people with MS across the world will have access to highly effective treatments, enabling them to have a fuller participation in their societies, and a better quality of life. I hope we will see all the amazing innovations that come from our dedicated MS researchers across the world getting to people with MS even in LMICs (low and middle-income countries).
Farewell
Where can listeners find more information about the MS International Federation’s work?
You can read all about MSIF on our website, and in particular if you are interested in improving access to healthcare, look at the section on Access & Advocacy: Access to MS healthcare – MS International Federation. Sign up to our monthly newsletter and follow us on social media to stay up to date.
What message would you like to share with MS patients who may currently feel disadvantaged due to limited treatment options?
We are listening. We understand that not being able to access treatment is an urgent issue. Across the MSIF movement, we have made it a priority to do everything we can to improve options for everyone with MS to get the treatment they want and need.
A big thank you to Anne Helme and all her colleagues for everything they have reached already for the wordlwide MS community.
See you soon and try to make the best out of your life,
Nele
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