Clinic Speak: Who should decide?

Which wheelchair would you like? You have a choice on the design. #ClinicSpeak #MSBlog #MSResearch

“Mouse Doctor and I were at a meeting a few weeks ago when a prominent London MSologist stated that ‘he was not prepared to prescribe alemtuzumab as it was too risky’. This is quite a remarkable statement in 2014 when we  have been trying so hard to push the concordance (patient-partner) over the compliance (paternalistic) model. After the encounter Mouse Doctor wondered if this particular MSologist allowed his patients a choice when it came to choosing a wheelchair, or did his attitude change as his patients became more disabled. I countered that to be fair to him he was prioritising their safety.”

“The vignette above is very common and I had many similar experiences with MSologists from many countries. I try and quote them results from surveys done on this blog (see below) and none of them buy into MSer-choice. This attitude is quite pervasive despite the EMA giving alemtuzumab a liberal first-line license for active MS defined clinically or on MRI. Why did the EMA give alemtuzumab such a liberal license? Simnply, because they considered the risk:benefit ratio to be favourable and that if you waited too long to use alemtuzumab you will have missed the window of opportunity to give MSers  the maximum benefit of the drug. What I am having difficulty getting across to my colleagues is that it should all be about MSer-choice and preventing end-organ damage. Why wouldn’t you adopt a preventative strategy? We simply can’t repair, or replace, a failing nervous system. I do agree that alemtuzumab is a risky drug and if we can sort out the risks, or if another drug emerges with similar efficacy but lower risks, the outlook for MSers will be so much better.”

“I plan to focus my talk at our 5th Research Day this weekend on this topic.”

CoI: multiple

11 thoughts on “Clinic Speak: Who should decide?”

  1. Prof G,I'd prefer if you didn't focus your presentation at the the research day on issues such as patient choice. Have a look at the audience when you get on the stage. You'll see a good selection of wheelchair users, a large number of cane users, and some desperate caregivers. I can't be the only one who attends these events for some hope. Is it worth me hanging around for another five years? Are the remyelination trials likely to restore function? The discussion / debate around access to alemtuzumab is fine for newly diagnosed – many at the research day have missed the window of opportunity.

    1. I suspect the boat is not quite missed because when DoctorLove and collaegues go to look at what,s going on in the brain there is often immune activity. However, with costs of drugs so high, you are rationed out of the equation. I wonder if there was a cheap active drug that got into the CNS, would this be tried and then you add repair and protection as an add-on.

    2. In terms of the research day, I think you have to look at where our research strengths are. Within UCLP, there is not much of a track record on repair in terms of research. There are some trials, Maybe in future we should invite Edinburgh, Cambridge, Bristol or Milan etc to give a broader state of play. But the idea is to show-case what we do and not what others do.

  2. I want to be able to have an informed, frank and open discussion about all of the options available regarding my treatment. If a drug is now available, the option should be too…

  3. So do they not believe in Lemtrada's efficacy, or do they prioritize drug/ physician caused harm as worse than disease caused harm, or are they just in habits formed when nothing was available? As a patient, I'd rather any of the bad Lemtrada effects than PML. And Tysabri is a good drug that does good for msers.

  4. Do patients sign a disclaimer when taking DMTs? If not, is that why doctors are unwilling to prescribe them and would patients be willing to do so?

    1. MSers can sign a disclaimer, but they count for much legally. I am not sure the a disclaimer addresses paternalistic problem.

  5. Desperate patients often make desperate decisions and many MS patients are desperate. MS patients will naturally move towards therapies with hope, but often without proper perspective of benefit versus risks. How many MSers would have opted for CCSVI if it was readily available? How many more patients would have died (complications) or otherwise been harmed? Lemtrada has a new owner, new name, new price increase, but the same risky side effect profile as Campath. Your own statement is the MS community would be better served with similar efficacy, but lower risks. Then how do you leave the risk decision totally in the hands of patients? Quite simply, you don’t. Doctors need to be more than a prescription pad; they need to be medical experts that look out for their patient’s best medical interests.

    1. That is correct; it is what concordance is about, shared decision-making. The question I am addressing is should neurologists take risky therapies off the table because they view them as being too risky for MSers? In other words they know better.

  6. The unaccustomed exerciser said Sunday, June 15, 2014 2:48:00 pmBeing an ms patient of 20 years 'standing' I've seen the advent of the first disease modifiers and been very angry they weren't available in the UK. Then i read up on them after being offered them xxxx and chose to decline them. Take a multiweekly injection for less than a 50:50 chance of it working?Are you mad?Then Tysabri came along and i tried to get that but my symptoms apparently weren't bad enough.Then Tysabri was dangled in front of me 8 years ago and the chance to be prescribed it was snatched away by XXXX 6 years ago after an mri, Apparently my brain was now too damaged.I think my point is to the medical/research community: give us some choices worth making. I would say 'Make it so i don't have to choose my wheelchair at all' but that happened last year.

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