Have you seen the film Dallas Buyers Club? It is one of the movies that haunt me and keeps coming back to me in my thoughts and dreams. I now know why.
Dallas Buyers Club is a 2013 American biographical drama about a patient diagnosed with AIDS in the mid-1980s when there were no licensed treatments for HIV. It was in an era when HIV infection was highly stigmatizing. Out of desperation, the main character Ron Woodroof, brilliantly played by an anorexic-looking Matthew McConaughey, establishes the Dallas Buyers Club, to smuggle unapproved pharmaceutical drugs into Texas for treating his symptoms and starts distributing them to fellow people with AIDS. As a result, he faces massive opposition from the Food and Drug Administration (FDA) and most sectors of the medical establishment. The movie is a monument to the human spirit and our desire to live and be treated as equals.
McConaughey and Jared Leto, who played Rayon a transgender AIDS patient, received the Academy awards for Best Actor and for Best Supporting Actor, respectively in the film. The film also won the Academy Award for Best Makeup and Hairstyling and was nominated for Best Picture, Best Original Screenplay, and Best Editing.
If you haven’t seen the film it is a must, but be warned you won’t finish seeing the movie without shedding a tear.
So what has it got to do with MS? In the latest BMJ, there is an article on Buyers Clubs in general. They are now quite common in the UK and have evolved out of the desperation of patients and their families to access treatments for many conditions where there is a current lack of access to specific medications under the NHS. Interestingly, the London gay community have set-up a buyers club to purchase pre-exposure prophylaxis or PREP to prevent themselves from becoming infected with HIV. There is nothing like the gay community to show us how health activism should be done.
Could buyers clubs be the solution for people with MS to access high-cost DMTs in resource-poor countries? Are there any local MS Champions in Kenya, Tanzania, Uganda, Zambia, etc. who are interested in setting-up a buyers club? We could explore the logistics and cost of purchasing generic equivalents of high-cost DMTs and biosimilars and shipping them into areas of greatest need. I am sure we could find some philanthropic neurologists in these areas who we be able to screen, monitor and look after these people with MS who need treatment? One successful buyer’s club could become a template on how to clone and reproduce them across the world.
Buyers clubs could even become a way of improving access to DMTs in middle-income countries with inadequate socialist healthcare systems; for example, many people with MS in Eastern Europe can’t access DMTs or have limited access to newer generation high-efficacy DMTs.
Do you think buyers clubs will address the problem of access to DMTs in resource-poor environments? Let us know your thoughts.
If you are interested in helping address the issue of lack of access to MS DMTs in resource-poor countries and environments post please sign-up to our Grass Roots Off-Label DMT Initiative (GROLDI).
Thank you.
CoI: multiple
Why not start one in the UK?
They did it for cystic fibrosis. The drug wasn’t patented in Argentina so the issued a generic version, which parents of sufferers in Blighty would import and sympathetic doctors would administer.
Why not do the same for MS drugs that are not issued by NICE?
RE: “Why not start one in the UK?”
We are fortunate enough in the UK to have access to all the DMTs. This is for people in the world who lack access to these treatments. I was told today that if you have MS in Kenya that the local community comes together to raise money to pay for expensive medical therapies. I am not sure a buyer’s club will help as the therapies may still be too expensive.
This is all very interesting, but what is happening to MS research? Is there no research being published to improve the understanding of the disease? Are there any trials to be published soon? As we approach the last couple of months of 2019, I see the year as particularly barren in terms of breakthrough MS research?
Lot’s is happening did you look at or watch my hot topics lecture from ECTRIMS?
I’ll watch it.
The problem is that you (and others) contribute to this situation (hi drug price)
“If I was to get involved, or as he put it ‘get into bed’, with Pharma I must make sure I do it with several companies rather than one.”
” He said having multiple conflicts of interest mitigates against the problem of being a ‘one company person’.
Of course multiple $treamm$ of revenue $$$$ 🙂
You yourself are a multiple company person
But now you are very worry about pwms living resource poor environments
I call this hypocrisy
https://multiple-sclerosis-research.org/2018/03/the-ms-establishment/
You are not the first, nor will you be the last, to call me a hypocrite. As the saying goes if you ‘claim not to be a hypocrite’ then you are a ‘liar’. Evolutionary psychologists’ argue, and quite convincingly, that our brains are hardwired by evolution to be hypocritical 😉
I doubt very much of Prof G or any other academic HCP has control over what DMTs cost. This is a job for NICE, which I believe do a good job by negotiating cost-effective prices for the NHS.
We have zero control
But for how much longer will that be the case post Brexit?
At least he is not an HSCT zealot. I would take Prof G’s hypocrisy long before your brand of zealtory.
He just tries to clear his consience -or his image 😉
Tu quoque fallacy
Kenya considerable closer to the Equator than England isn’t it?
Does that bomb out of the water the idea MS is to do with lack of vitamin D from sunshine….?