MS-Selfie DMT Infocards version 5.1
Some pharmaceutical companies have complained about our ratings of relative efficacy between the DMTs. Do they have a case?
We are getting there slowly and steadily. Safiya Zaloum, the very bright and highly motivated medical student, has taken all your comments to heart and has now produced an almost final version of the MS-Selfie Infocards to help inform people with MS about disease-modifying therapies (DMTs) and to assist them in coming to a treatment decision.
The objective is to have a simple info card per DMT as a pack of cards. The HCP selects the relevant info cards for a particular patient. This may, for example, result in the patient being given two, three or four cards of the DMTs they are eligible for and what the HCP is recommending. The patient then goes away with their selection for further research and to make a guided decision. On the back of the card are two QR codes that link to more information on the specific DMT on MS-Selfie or via the official summary of product characteristics produced by the company marketing the product.
Safiya has designed the info cards to be simple and intuitive. The pack of cards includes unlicensed therapies that can be prescribed off-label in low and low-middle-income countries. Please let us know if we are missing any off-label DMT that is being used somewhere with an evidence base.
Safiya would like some final feedback from you before we go ahead and start printing and distributing the final product. You can download a PDF of the cards from my FileSharing site or see them online via Google Slides. Safiya has created an online survey for feedback. We would like to know if the info cards add anything to our ClinicSpeak online DMT decision tool.
Interestingly, some pharmaceutical companies have complained about our ratings of relative efficacy between the DMTs. We have based the ratings for the licensed DMTs on a network analysis and the off-label DMTs on their relative efficacy to licensed DMTs. As a neurologist who works in a high-income country, I would only recommend off-label DMTs to patients who are not eligible for a licensed product.
Thank you for being so patient, but getting these cards as correct as possible is essential. There is no point producing them if they don’t get used.
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Lol, of course pharmaceutical companies are complaining about offering objective information about their, and other, DMT's! They are in it for profit; effective marketing drives profit, and is inherently biased, by design. Objectivity removes marketing hype, taking away that power of biased influence, so naturally anything that puts distance between their marketing spin (bias) and their product will be of concern to them.
Their concern is duly noted.
Now please proceed with this desperately-needed, accessibility-friendly essential tool for pwMS in making major decisions concerning their health that literally may have of life-or-death consequences for them. The stakes can't get much higher for patients receiving this succinct, objective presentation of DMTs.
Yes, the stakes are equally high for their profits. Pick your side: profit or peoples' lives. The ethical choice is clear.
Bravo to you for so carefully crafting this most useful tool for pwMS! 👏
And thank you from the bottom of my heart.
"do they have a case?" - they're entitled to their feelings.
I think we're beyond this, if we want patients making decisions on what risks are and are not acceptable then the risks need to be shown warts and all - including the risk of doing nothing and the risk of gradually ramping up treatment while accruing brain damage as opposed to hitting hard from the outset.
And neurologists need to be more honest about "lesions". Particularly when lesions "heal" and when they are or are not "expanding". Perhaps explaining that the neurons inside lesions stop functioning once the lesions are formed and are essentially holes in the brain where there used to be functioning neurons. I think that might sway the more cautious to opt for treatment given the damage they're accruing.