Damp Squib

D

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. 

  1. They acknowledge that adequate funding is needed for national health-care systems in low-income settings. 
  2. They suggest treatment guidelines that consider the different resource levels available in each setting, are also essential.
  3. They make the point that easily accessible training and peer-support for neurological specialisation would enhance multiple sclerosis care worldwide. 
  4. They highlight that the cost of treatment could be tackled either through 
    1. negotiations with the pharmaceutical industry 
    2. differential pricing (ie, the drug price varies according to several parameters such as affordability)
    3. voluntary licensing through organisations such as the Medicines Patent Pool
    4. 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. 

Diepsloot, Johannesburg, South Africa; image from Wikipedia

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:

  1. Identifying local MS champions and creating an international database.
  2. Creating and disseminating an essential off-label DMT list with detailed protocols on how to use each agent.
  3. Modified diagnostic criteria for use in resource-poor environments; these will need to country-specific.
  4. Protocols for derisking and monitoring DMTs in these environments.
  5. Creating a platform and network to allow neurologists and other HCPs from these countries to share their experience.
  6. 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

  1. Azathioprine*
  2. Cladribine
  3. Cyclophosphamide*
  4. Fludarabine*
  5. Leflunomide
  6. Methotrexate*
  7. Mitoxantrone
  8. Rituximab*
  9. Generic dimethyl fumarate (Skilarence)
  10. Compounded dimethyl fumarate
  11. HSCT

*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.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

12 comments

  • Re. ‘Prof G questions why the MS community is so apathetic…’

    Who are you including when you say ‘MS community’, in the context of this question ?
    Some pwMS who live in places such the UK?

    Just checking, to be clear I understand correctly.

  • I think saying “MS Community “ needs more specificity.
    I think of Patients, who have Zero control of Anything, yet quite empathetic to those who can’t or don’t have what they need.
    I think of Physicians, And Nurses who can’t do everything.
    I think of organizations like National MS Society… Now That’s what I think you’re talking about. Fundraising, advocacy? Where does all the bike ride money go?
    Oh, and Pharma… no ethics review?
    Celebrities wanted, public service announcements, fund raisers.

    • squib noun

      \ ˈskwib \
      Definition of squib
      1a: a short humorous or satiric writing or speech
      b: a short news item
      especially: FILLER

      2a: a small firecracker
      b: a broken firecracker in which the powder burns with a fizz

      3: a small electric or pyrotechnic device used to ignite a charge

      • Squib was highjacked as a word in the wizarding world of Harry Potter, by JK Rowling!

        A Squib, also known as a wizard-born, is a non-magical person who is born to at least one magical parent. Squibs are, in essence, ‘wizard-born Muggles.’ They are rare and are looked upon with a degree of disdain by some witches and wizards, particularly pure-bloods.

      • No it is a squib; a damp squib refers to when the firework goes out prematurely or splutters and fizzes, but never gets going. In other words it is underwhelming.

  • Apathetic indeed!
    Norwegian MS-society:
    “Embrace your MS, and we will help you be proud of it”
    HSCT zealots:
    “We can fight it!”

    It’s really an easy choice…. even if there are some medical shades of grey.

  • Mental exhausation and brain fog keeps my attention focussed on my own day to day needs. I remember as a young person being exasperrated with my aging grandmother because she was not interested in certain events and causes at the time and now that I have MS I look back and can understand her lack of interest.

  • I want to make it clear that there is likely to be an unconscious bias against off-label prescribing of generics and biosimilars despite a robust evidence base. It is the elephant in the room. Whenever I attempt to shift this issue to the top of the agenda it gets watered down and put at the bottom of the list and often euphemisms are then used to discuss it, for example, the term ‘repurposing’. I suggest we come up with a more neutral term that is acceptable to all parties to discuss and brand this issue; for example, “affordable DMTs” vs. “high-cost DMTs”. Affordable captures everything we are trying to do without stating the obvious.

    A lot of people in the MS community don’t want to rock the boat when we really need to capsize the boat. Many of my colleagues, including me, are so conflicted that we tend to toe the Pharma-line because we have been indoctrinated.

    We kicked off our “affordable DMT” campaign in October 2014 and I am ashamed that it is now 5 years since our first activities in this space and nothing has really changed. I can count the number of centres on one hand (excluding rituximab use, which is really high-cost DMT) that are using off-label DMTs and they are all in high-income countries. I am a big proponent of ‘Time is Brain’ in MS and that includes the brains of pwMS living resource-poor countries. I want this campaign to become urgent if that is at all possible.

    We are going to try to do something small and local in Africa, India and Pakistan. We plan to visit all these countries in 2020.

    • I like affordable DMT and it solves the issue of off-label, generic, biosimilar, bioequivalent, unlicensed, licensed, compounded, etc.

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