This was written by Joanna Laurson-Doube for OneNeurology on World Brain Day. You can find the original article here. Joanna is MSIF’s International Consultant – Access to Treatment
There is unequal access to disease modifying therapies for multiple sclerosis. Cost and affordability can be major drivers for narrowing health inequities for people within and between countries. Improving access to treatment requires for-profit and non-profit organisations to have more open conversations to create fairer societies.
Equity is a moral principle, based on human rights, that aims to remove systematic disparities affecting people who are socially disadvantaged (1). Inequities in health widen the gap between the rich and powerful and the poor and disenfranchised. This is of particular importance in neurology, as people’s understanding of the diseases can be limited and stigma can be rife. ‘Access’ is a nuanced problem with socio-environmental and economic influences on the national, local and individual level. Addressing cost and affordability can be a major driver to improve access.
There are 2.8 million people living with multiple sclerosis (MS) around the world (2), a complex chronic neurological auto-immune disorder. Very effective treatments, or disease modifying therapies, exist to manage MS. There is no cure, but with early diagnosis, access to treatment can make a significant difference to the quality of life of people living with MS. Currently there are 17 disease modifying therapies approved by the European Medicines Agency (EMA) and/or the Food and Drug Administration (FDA) for treating MS. It is important to have a range of disease modifying therapies available to manage the disease course and allow people to consider the benefits and risks of different approaches.
The challenges of accessing treatment
A diagnosis of MS is a prerequisite for getting treatment, but the Atlas of MS reports that 83% of countries worldwide have barriers that prevent early diagnosis of MS. In low and middle-income countries, these include awareness of symptoms, availability of qualified healthcare professionals (e.g. neurologists) and the availability and cost of the diagnostic equipment and tests. Many of these barriers are common across different neurological disorders.
Ability to access disease modifying therapies for MS exemplifies the issue of inequity. Health systems around the world are structured differently, but in essence a person’s situation is dictated by whether:
- they have access to healthcare;
- the healthcare system will pay for MS care (e.g. diagnosis and treatment);
- a range of disease modifying therapies is available and covered by the healthcare system;
- this treatment provision is continuous or limited;
Fifty-seven per cent of countries globally reported that people are required to pay all or part of the cost of their disease modifying therapies themselves. These are referred to as ‘out-of-pocket’ costs.
Access to treatment is therefore heavily influenced by the country’s healthcare system and an individual’s ability to pay for services. In the Atlas of MS, 72% of countries reported barriers to accessing disease modifying therapies; 49% of those say a major barrier is the cost to the government, healthcare system or insurance provider.
The high cost of healthcare to individuals impacts all the way along the MS journey. People may decide not to take costly diagnostic tests because they will not be able to afford treatment. The second most common barrier to accessing treatment reported by the Atlas of MS is that people with MS do not take disease modifying therapies, often due to personal expense. Some people may decide to defer expensive long-term medication until they are sufficiently disabled to access their government’s reimbursement system, despite the data showing the effectiveness of early treatment. Some report re-mortgaging their house to afford treatment, while many have no options because the costs will be catastrophic for their family.
What can we do?
Tackling structural problems and international action
Cost and affordability of disease modifying therapies is challenging to study because accurate price information is not publicly and transparently available. The price for disease modifying therapies can vary hugely from country to country. For example, many governments work with pharmaceutical companies to negotiate prices significantly lower than list prices, with the prices remaining secret by non-disclosure agreements. Larger markets and more organised health systems are more likely to be able to negotiate better prices, because they provide a more stable and predictable demand. There are also innovative funding schemes by pharmaceutical companies, allowing the cost of the disease modifying therapies to be managed by people with lower incomes, e.g. paying by instalments, partial subsidies or co-payment.
Improving access to treatment requires open and trustworthy collaboration between for-profit and non-profit entities, including pharmaceutical companies, pharmaceutical manufacturers, insurance providers and governments, national health systems, patient organisations and non-governmental organisations. Profit generation from people’s health has always been a tricky act to balance.
Drug development is a for-profit endeavour and investment is needed for research and development. The Right to Health is a human right and equitable access to care is something we strive for. Are we having the right conversations to tackle these issues on a structural level? What more can we do to identify common ground?
The World Health Organization Intersectional Global Action Plan on Epilepsy and other Neurological disorders may address some of the more practical questions: What diagnostics and drugs should be available in all health systems for neurology? What is ‘fair pricing’ of these products? What responsibilities sit with national ministries of health, the pharmaceutical industry, and international non-profit organisations?
As a patient organisation, MSIF is actively tackling some of these challenges. We are planning to submit a revised application to add MS treatments to the World Health Organization Essential Medicine List. This will guide decision makers on which disease modifying therapies for MS should be available as a minimum in all health systems.
Related to this, MSIF is reviewing the off-label use of disease modifying therapies to treat MS. In the Atlas of MS survey, 87% of countries reported using at least one off-label disease modifying therapy. ‘Off-label’ treatments have regulatory approval for an ‘on-label’ indication, but not for MS. Off-label disease modifying therapies 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. The question of whether to use off-label treatments is a real issue that clinicians and people with MS face, and we want to support people to understand the benefits and risks, so they can make the best decisions to manage their disease.
Capacity building and advocacy on a national level
While international long-term change is essential, real change often happens on a national level. MSIF is working together with national MS organisations to energise local action. It is important to find effective and sustainable solutions using in-depth local knowledge, good governance and to ensure long-term fundraising income is available. Collaborations between countries and between MS organisations, healthcare professionals and other patient organisations is crucial and needs a concerted effort. National advocacy and the power of collective action is demonstrated by a recent example from Chile, resulting in everyone with MS in Chile having equal access to all available treatments.
The Atlas of MS portal provides freely available data on epidemiology and clinical management of MS around the world, allowing comparisons to be made between countries with similar income levels or geographical region. Good quality data on people with MS (e.g. registries) and an in-depth understanding of the barriers are often effective tools for advocacy. We work with local MS organisations, such as in Morocco, to better understand the national landscape of MS care and identify appropriate policy changes to improve the life of people with MS.
Effective treatments exist for a number of neurological conditions, but not all. In many cases, despite effective treatments existing, disadvantaged people continue having poorer health outcomes and are burdened by high-cost medicines. Narrowing inequalities by improving costs and affordability can have a profound effect on the individual, the family and make society fairer overall.
- Braveman P, Gruskin S. Defining equity in health. J Epidemiol Community Health. 2003 Apr 1;57(4):254–8
- Walton C, King R, Rechtman L, Kaye W, Leray E, Marrie RA, et al. Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS, third edition. Mult Scler J. 2020 Dec 1;26(14):1816–21.