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 Organisation 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 Organisation 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.