BROADCASTS.com

Published: Nov. 4, 2015, 11:12 a.m.

[intro music]

\n

\xa0Host \u2013 Dan Keller

\n

Hello, and welcome to Episode Fifty-Nine of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I\u2019m your host, Dan Keller.

\n

In our previous podcast, you heard about a group of leading MS researchers and clinicians calling for a big change in improving care for people with MS. The new report, called Brain Health \u2013 Time Matters in MS, makes the case for a therapeutic strategy to minimize disease activity. The report advises early diagnosis and treatment, and regular monitoring of disease activity. The report urges patients, physicians, health care payers, and policy makers to support the goal of life-long brain health.

\n

In this podcast, another one of the report authors, Dr. Helmut Butzkueven, talks about what the new treatment target means for patients and their doctors in the real world.

\n

This is one of our extra podcasts from the big MS meeting in Barcelona talking about ways that evidence from research can be translated now into better MS outcomes

\n

But first, here are some new items in the MS Discovery Forum.

\n

Every week, MSDF lists the latest scientific papers on MS and related disorders, with links to the abstracts on PubMed. Of more than 110 new studies published last week, we selected three as editor\u2019s picks.

\n

MS has been traditionally viewed as a T cell\u2013driven disease, but a new paper from Canadian researchers introduces another villain\u2014a rogue type of B cell in people with MS that may fuel inflammation in two ways. This may be why general B cell depletion seems to work so well in MS and may lead to more targeted treatments.

\n

In a new twist on dietary fat and autoimmune disease, German researchers report that certain fats work through gut microbes to exert both good and bad effects. In mice, they found certain fats were protective against inflammatory fats. They have moved on to testing in healthy humans and hope to study the impact in people with MS.

\n

A cost-effectiveness study from Spain says do not judge a drug by its price alone. Glatiramer acetate may be more expensive than interferon-beta, but fewer relapses and reduced spasticity may make it more cost effective. Interesting, but you can be sure this fuller economic look will not be the last word on drug costs.

\n

[transition music]

\n

And now to our interview with Dr. Helmut Butzkueven, who directs the MS services at the Royal Melbourne Hospital and the Box Hill Hospital in Melbourne, Australia. We spoke with him at the recent European Committee for Treatment and Research in MS, or ECTRIMS, meeting in Barcelona about the Brain Health report that was launched at the meeting. The main thrust of the report \u2013 aimed at the broad MS community \u2013 is that time matters in MS. The report lays out several goals to maximize brain health over the lifetime. A critical one is early intervention.

\n

Interviewee \u2013 Helmut Butzkueven

\n

We know that early disease activity sets up long-term problems. However, early disease activity is often relatively silent to the eye. It\u2019s not silent to the eye of the MRI machine and other monitoring tools that we have. So we would like clinicians and patients, not actually just in early disease, but starting right from the start to have a proactive monitoring approach to jointly assess their disease activity and take action if things are not going well.

\n

Interviewer \u2013 Dan Keller

\n

How much of an emergency is it? If someone finds out they have a cancer diagnosis, they rush to a surgeon, oftentimes. If they find out they have high cholesterol, they might take a year or two to decide to get on a statin. So what\u2019s the time frame we\u2019re talking about here?

\n

Dr. Butzkueven

\n

I think the appropriate time frame to think about is months, actually. We think that an MRI scan should be performed approximately every 12 months to assess disease activity, to assess how your current treatment is performing. So it\u2019s not seconds or minutes; thankfully, multiple sclerosis isn\u2019t exactly like an acute stroke or a heart attack. But it\u2019s also not a time, particularly early in the disease when you could be setting up these kind of strategies, to just leave people be. We need to, when we first see patients, articulate our monitoring goals.

\n

MSDF

\n

And how quickly should someone, when they\u2019re referred and there\u2019s a putative diagnosis, get that scan initially?

\n

Dr. Butzkueven

\n

As soon as possible. I mean, scans are crucial, obviously, for diagnosis \u2013 accurate diagnosis, as well as for setting up the monitoring phase, because the first scan can then be compared to the next scan, and so on.

\n

MSDF

\n

What other goals are there for treatment and management?

\n

Dr. Butzkueven

\n

The key things that we want to really focus on, apart from what we\u2019ve already discussed which is early diagnosis and articulating a treatment and monitoring plan to maximize brain health, is a joint approach. So for people with MS and doctors to both be empowered to jointly manage the disease. So this includes, of course, increasing consultation time, giving people time to discuss their MS with their managing team. I think this kind of move away from paternalistic medicine, to empowering patients to be part of the management process to self-manage is hugely important. That\u2019s just in step with the modern world.

\n

The other thing is more indirect. Across the world, we face huge differences in access to disease-modifying drugs. Some of us living in the United States and Australia in Germany, Switzerland are luckier than others. And we really need to provide evidence to government that disease-modifying drugs are worth funding.

\n

MSDF

\n

Or else what happens?

\n

Dr. Butzkueven

\n

Else people, and ultimately governments, incur the costs of markedly worse disability.

\n

MSDF

\n

To empower patients takes certain knowledge and, I suppose, permissions or rapport with the physician. And to empower the physician, I suppose, takes knowledge, evidence, consult. So are these two different things? Do they move in parallel, but they require different activity?

\n

Dr. Butzkueven

\n

Yes, they do. Of course they do. To some extent, changing practice in an interaction can come from either side of the interacting party, but certainly patients, on the whole, probably need to be more demanding. They need to have access to evidence, and I\u2019m going to say something controversial, to actually help assess the clinical care that they are receiving. So people should say, for example, if this report, the evidence suggests that perhaps we should be doing something else. What do you think?

\n

Physicians, as I said, need to be strongly encouraged to have a priori a specific plan. If you were someone with MS, and we saw you for the first time in our clinic, we should be telling you what the goals are. We should be telling you what our scheme of monitoring is going to be to maximize your outcome, to maximize your brain health.

\n

MSDF

\n

What kind of a role can longitudinal databases play in changing policy?

\n

Dr. Butzkueven

\n

They\u2019re really the only source of long-term data. MS is a disease which you\u2019re going to have for decades, once you\u2019re diagnosed with it, and it likely will cause you and your government very significant costs over that time. But those costs can only be measured if we measure those outcomes, and the only way to really measure them is longitudinally. So databases embedded in the real-world healthcare collecting just a minimum of information on as many MS patients as possible can be enormously powerful, doing the sums in the first place, actually understanding how much disability there is; how much can be prevented with appropriate treatment strategies; and, dare I say it, how much money government could save.

\n

MSDF

\n

MRIs are now a powerful tool. Other medical specialties have had all sorts of invasive measures in the past. You could take biopsies of skin, breast, prostate, liver. You never had an assessment tool this powerful, but now this one is fairly noninvasive. It\u2019s completely noninvasive. What can it tell you? I mean, people look for lesions, but there\u2019s much more to be derived.

\n

Dr. Butzkueven

\n

Yes, of course. Lesions is still a key outcome, but the other thing is brain shrinkage \u2013 brain atrophy. So we, increasingly, understand that people who are experiencing significant brain loss \u2013 brain tissue loss \u2013 early in their MS will do worse, in the long-term. So here we have another target for monitoring. And people might say, well, I do an MRI scan, but there are no lesion changes reported. There\u2019s no volume changes reported. But this world is changing rapidly. Image recognition analysis tools are advancing very quickly. I predict, within two or three years, routine MRI will actually spit out these metrics for us. At the moment, a lot of reporting, unfortunately, in the world is still what we would call qualitative rather than quantitative. But we\u2019re going to start seeing those numbers, and we need to be ready to act on them.

\n

MSDF

\n

How much faster does the brain, in an MS patient without treatment, atrophy or lose volume compared to an age-matched control?

\n

Dr. Butzkueven

\n

So this is a question that I can answer in two ways, I think, to illustrate the concept. I could say it\u2019s five to seven times faster. What I\u2019m talking about there is averages, medians if you like. What I should be saying is that it could be anything. Your trajectory, as an MS patient, could be exactly within the normal range, I mean, sadly \u2013 particularly over the age of 30 \u2013 all of us lose a bit of brain volume a year: 0.3%, 0.4%. In MS, that could be your trajectory, and that would be fantastic. On the other hand, you could the person losing 3%, 4% \u2013 10 times, 15 times normal. And we could pick that within a year or two, and that is the time to intervene, not when that ultimately results five, six, ten years later in progressive disease.

\n

MSDF

\n

You\u2019ve made the analogy of managing MS to a new car and its warranty. Can you tell me about that?

\n

Dr. Butzkueven

\n

I was really just trying to say that plans for keeping things well, keeping things in shape, are quite prominent in society. So this analogy is simple. You buy a new car. What you get with it is a service book. The service book gives you a plan for managing your car. At 6 months, there\u2019ll be a little tire change, oil change; 12 months there\u2019ll be a major service, and so on. And the thing is, as a customer, I mean, you buy the car. It\u2019s already there. It\u2019s the same thing. We want clinicians and patients to demand and to deliver a plan. This is how we\u2019re going monitor your MS to maximize the health of your brain.

\n

MSDF

\n

So this is your 6 month service. This is your 12 month service.

\n

Dr. Butzkueven

\n

Exactly. So, for example, in might be we will see you every 6 months, and we\u2019ll do a neurological examination. We might do a particular cognitive test. We will do a repeat MRI scan, ideally on the same machine, once a year. We will be looking for the following: we will take action if things are going badly. If things are going well, then we\u2019re reassured. But we need people with MS to demand this, and we need clinicians to deliver these plans.

\n

MSDF

\n

I don\u2019t mean to make light of the situation of having the disease, but I think people respond well to something they already know, like a service plan.

\n

Dr. Butzkueven

\n

Yes, sure. I guess that\u2019s why I\u2019m using that analogy. Maybe we should say we need a service plan for MS.

\n

MSDF

\n

Is there anything we\u2019ve missed or important to add?

\n

Dr. Butzkueven

\n

Nothing. We\u2019ve covered the key recommendations of the report: access to early diagnosis, consideration of early treatment, a service plan, empowerment of people with MS to actually have accurate information, and being empowered in shared decision-making, and finally, the health economics situation, powered by clinicians \u2013 more and more clinicians \u2013 collecting long-term outcomes data on people with MS.

\n

MSDF

\n

And the Brain Health report is freely available, and we will link to it. I appreciate it. Thank you.

\n

Dr. Butzkueven

\n

It\u2019s a pleasure. Thank you for talking with me.

\n

[transition music]

\n

MSDF

\n

Thank you for listening to Episode Fifty-Nine of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF\u2019s executive editor is Carol Cruzan Morton. Heather McDonald curated the MSDF drug database updates. Msdiscovery.org is part of the nonprofit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is Vice President of Scientific Operations.

\n

Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.

\n

We\u2019re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.

\n

For Multiple Sclerosis Discovery, I'm Dan Keller.

\n

[outro music]