GROLDI hits a wall

To help with our #OffLabel campaign to help HCPs treat pwMS in resource-poor environments I asked Gisela Kobelt, a health economist, who I have worked with for many years for help. What she said to me made me realise that the hurdles we face are much higher than I expected. 

These are her relevant comments:

“The economic case for any treatment in resource-poor countries is difficult, simply because not treating is cheaper than treating, and as no one seems to take care of disabled people in these countries they are left in the charge of their families. Therefore, the usual health economic arguments do not apply. As the economic arguments have been wasted in Europe and the USA, how could we expect them to work in these countries?”

“You need something bigger, in fact, something at the strategy level where the main message is that any health care system, even in poor countries, has been designed to help people with the means available. You need to make humanitarian arguments more than economic ones. Politicians that actually have a heart and a brain (rare birds these days!!) can promote the right arguments. Maybe an economic component would be that currently, even the things that are being done are pretty useless, hence resources are being wasted, and some could be switched to interventions that have some utility.”

The bottom line is that we need to shift the emphasis away from the economic arguments to the humanitarian ones. So if you have any stories to highlight the plight of people with MS living in resource-poor countries to share with us please come forward; you can use the Barts-MS blog as a soap-box.  We need to make politicians in these countries and the WHO sit-up and listen.

  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)

CoI: multiple

3 thoughts on “GROLDI hits a wall”

  1. I have MS for 17years,I have no th because I enver offered one.I have two children who need me.I don’t want my kids to spejs their best years pushing mom in a stroller.Our familije get sick with us,taking care.I just want’s a cure for Ms

  2. If the numbers affected are large enough, as with HIV-AIDS for example, then even economic arguments will work. For MS, that isn’t the case — soj governments are unlikely to be involved in decisions about MS treatment

    The MS societies represent patients. They are usually in touch with concerned neurologists. (They are also in touch with the DMT companies, buy that’s a different matter)

    The message about off-label treatments must reach the MS societies and neurologists. The MS societies are a good route to reach the neurologists

    1. That is true. When there isn’t already a health care plan for MS patients, it is very hard for an outsider to to bring a change in a central system. Only patients can push for that and MS societies can be the vehicle. If WHO had agreed to update their list of essential medicines, it would make things much easier, but I guess the patents are inhibiting the process.

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