The Editors’ of The Lancet Neurology weigh-in with a commentary on the decision of the WHO committee not to recommend glatiramer acetate, fingolimod and ocrelizumab for the WHO EML (Essential Medicine List).
The Editors’ reiterate the usual recommendations to address the challenge of treating MS in resource-poor countries.
- They acknowledge that adequate funding is needed for national health-care systems in low-income settings.
- They suggest treatment guidelines that consider the different resource levels available in each setting, are also essential.
- They make the point that easily accessible training and peer-support for neurological specialisation would enhance multiple sclerosis care worldwide.
- They highlight that the cost of treatment could be tackled either through
- negotiations with the pharmaceutical industry
- differential pricing (ie, the drug price varies according to several parameters such as affordability)
- voluntary licensing through organisations such as the Medicines Patent Pool
- or by looking at the potential of repurposing medicines already available in low-income settings for other diseases
They conclude with the comment that “it is essential to ensure that people with multiple sclerosis have timely access to safe and effective treatments. Repeated strong global advocacy efforts through organisations such as the WHO are needed to reduce the global burden of multiple sclerosis”.
Why didn’t the Editors call for a political campaign to challenge the WHO? In my opinion, their editorial is a damp squib; it is far too passive, it lacks energy and direction. I suspect it will not make an iota of difference for people living with MS in low- and middle-income countries. Do they really care?
What we need is for the MS community to learn from HIV-activists and Amnesty International. We need a start a letter-writing campaign targeting all WHO country representatives to move multiple sclerosis up the WHO agenda. The letters need to be country- and region-specific with hard data and emotional stories. For example, personal narratives of how hard it is to live with MS on the streets of Kibera in Nairobi or in Diepsloot on the outskirts of Johannesburg. The targets need to be wider than the WHO and include health ministries, politicians and other people of influence.
The access campaign needs to be managed and run like a political campaign. It needs a public relations and multi-media plan. The question I am asking is why is this not happening already? Who is responsible for making it happen? One of the problems is that organisations who are meant to be representing pwMS are conflicted and essentially in the pockets of big pharma. Their committees are stuffed full of representatives who are conflicted and will not rock the boat. If you are interested in how far the tentacles of Big Pharma extend you need to read Ben Goldacre’s book ‘Bad Pharma’ or the House of Commons Health Committee report on ‘The Influence of the Pharmaceutical Industry’.
To the get to the bottom of this, I have briefed a journalist to investigate these conflicts to see if they may explain the apathy of the MS community to address access to DMTs in resource-poor environments.
The plan that I am currently formulating is to come at this via a grass-roots movement. I suggest starting small and local:
- Identifying local MS champions and creating an international database.
- Creating and disseminating an essential off-label DMT list with detailed protocols on how to use each agent.
- Modified diagnostic criteria for use in resource-poor environments; these will need to country-specific.
- Protocols for derisking and monitoring DMTs in these environments.
- Creating a platform and network to allow neurologists and other HCPs from these countries to share their experience.
- Identifying countries with suitable infrastructure to collect real-world data to assess the effectiveness of off-label DMTs in these environments.
Barts-MS Essential Off-Label DMT List
- Generic dimethyl fumarate (Skilarence)
- Compounded dimethyl fumarate
*on the 19th WHO Model List of Essential Medicines (April 2015)
If you are interested in helping address the issue of lack of access to MS DMTs in resource-poor countries and environments please sign-up to our Grass Roots Off-Label DMT Initiative (GROLDI)
The Lancet Neurology. Essential medicines for patients with multiple sclerosis. EDITORIAL| VOLUME 18, ISSUE 12, P1067, DECEMBER 01, 2019.