Today is World MS Day 2020 and its theme is ‘connections’.
MS Connections are about building community connection, self-connection and connections to quality care. The event is coordinated by the MSIF, who want to challenge social barriers that leave pwMS feeling lonely and socially isolated. Together, they are advocating for better services and are celebrating support networks. Another action the championing of self-care.
For some of you, these objectives may look very soft and fluffy, when all you want is hard science, innovation and new treatments to prevent, stop, reverse and cure MS. However, if you been in the field for decades you realise that science happens slowly and incrementally and even when it does deliver real groundbreaking innovations and results, the field is often not ready to adopt them. Why? Social scientists know the answers to this, which is why I spend more time nowadays reading the social sciences than I do reading the sciences.
For example, the biggest class of innovations to hit the field of MS during my career are the immune reconstitution therapies (IRTs), i.e. alemtuzumab, cladribine and HSCT. Many pwMS who have been treated with IRTs are now in longterm remission and have potentially been cured of their MS. Yes, these individuals may live out their lives with no further attacks. The rate of adoption of IRTs is depressingly low and with COVID-19 and its fallout, they are being abandoned as treatment options by many HCPs.
I think we as a field are making a big mistake by abandoning IRTs. As a class, IRTs have to be the answer to how we will treat MS in the future. I envisage using IRTs as true induction therapies and following them with targeted maintenance treatments (e.g. antivirals) and add-on remyelination and neurorestorative therapies in the future. IRTs are the gateway to really changing the lives of pwMS, yet we seem to be abandoning them.
Please note I personally think anti-CD20 therapies should be used as IRTs; i..e. two years of treatment with a high-dose followed by maintenance therapy. This will also make anti-CD20 therapies safer as a class; their Achille’s heel will always be longterm safety.
Back to World MS Day. The objectives of #MSConnections reminds me of our #ThinkSocial campaign, which is to focus on the social determinants of health (SDoH) and how they impact on MS outcomes.
What are the SDoH?
The SDoH are life-enhancing resources, such as food supply, housing, economic and social relationships, transportation, education and health care, whose distribution across populations effectively determines length and quality of life. As MS is such a disabling disease with poor quality of life it is likely to impact on the SDoH, which in turn will have a negative feedback and make MS outcomes worse. This vicious cycle has to be broken if we want to optimise MS outcomes; i.e. when applying the philosophy of marginal gains we can’t ignore the SDoH when managing someone with MS.
The Swedish study below, which I often quote, is an example of how having MS reduces your earnings. Interestingly, the reduction in earnings even begins before MS diagnosis and clearly increases thereafter. I suspect some people who have prodromal MS have difficulty working, which impacts on the average outcome or earnings. Besides sickness absence and disability pension, educational level and type of occupation are influential determinants of earnings in pwMS. In other words, inequality plays a role in determining your earnings once you have MS. Are you surprised? I am not.
Very few HCPs routinely screen for the SDoH during consultations. I think we are making a mistake by not. The following is a shortlist of some of the SDoH that may impact on MS outcomes:
1. Level of education and health literacy
2. Poverty (absolute or relative)
3. Employment / unemployment
4. Access to social services (personal independent payments, etc.)
5. Home environment (heating, cleanliness, amenities, etc.)
6. Local environment (safety, green spaces, amenities, etc.)
7. Food poverty (absolute or relative)
8. Transport (access and costs)
9. Childcare (access and costs)
10. Social isolation (social networks, access to the internet, mobile phone, data, etc.)
11. Lifestyle factors (sedentary vs. active, smoking, alcohol and other addictions)
12. Need to be looked after by a child (childcarer) or ageing parents or other family members (aged carers)
13. Cognitive impairment and hidden psychiatric comorbidities (depression and anxiety)
14. Physical and emotional abuse
How do we address these issues during a consultation without upsetting pwMS by being too overbearing? Some solutions to improving or at least addressing the SDoH could include:
1. Provide information about IT solutions to help pwMS.
2. A high-risk register of patients within the MS service; patients on this list would need to be seen and contacted more frequently, ideally on pre-planned and regular basis.
3. Selective home visit programme.
4. Making sure patients know that they can get hospital transport so they don’t go out of pocket or reimburse their travel costs.
5. Convert were possible physical face-2-face visits with telemedicine options (COVID-19 has turbocharged this change).
6. To do a complex needs assessment similar to what is done in other disease areas to identify high-risk or vulnerable patients.
7. Encourage the government to waive prescription costs for pwMS and other disabilities.
8. Encourage the government to create a healthy food voucher system for pwMS and other disabilities.
9. Encourage the government to improve social services for pwMS and other disabilities.
10. Engage pwMS and include them in your service; for example, using an MS Health Champions model.
11. Explore social prescribing to increase social capital.
12. Enrol all patients into a lifestyle and wellness programme.
On World MS Day do you have any suggestions we can add to the list? I co-chair the SDoH workstream on our Raising the bar initiative so any workable ideas may get implemented in the NHS or as part of social services.
Wiberg et al. Earnings among people with multiple sclerosis compared to references, in total and by educational level and type of occupation: a population-based cohort study at different points in time. BMJ Open. 2019 Jul 11;9(7):e024836.
OBJECTIVES: To investigate earnings among people with multiple sclerosis (PwMS) before and after MS diagnosis compared with people without MS, and if identified differences were associated with educational levels and types of occupations. Furthermore, to assess the proportions on sickness absence (SA) and disability pension (DP) in both groups.
DESIGN: Population-based longitudinal cohort study, 10 years before until 5 years after MS diagnosis.
SETTING: Working-age population using microdata linked from nationwide Swedish registers.
PARTICIPANTS: Residents in Sweden in 2004 aged 30-54 years with MS diagnosed in 2003-2006 (n=2553), and references without MS (n=7584) randomly selected by stratified matching.
OUTCOME MEASURES: Quartiles of earnings were calculated for each study year prior to and following the MS diagnosis. Mean earnings, by educational level and type of occupation, before and after diagnosis were compared using t-tests. Tobit regressions investigated the associations of earnings with individual characteristics. The proportions on SA and/or DP, by educational level and type of occupation, for the diagnosis year and 5 years later were compared.
RESULTS: Differences in earnings between PwMS and references were observed beginning 1 year before diagnosis, and increased thereafter. PwMS had lower mean earnings for the diagnosis year (difference=SEK 28 000, p<0.05), and 5 years after diagnosis, this difference had more than doubled (p<0.05). These differences remained after including educational level and type of occupation. Overall, the earnings of PwMS with university education and/or more qualified occupations were most like their reference peers. The proportions on SA and DP were higher among PwMS than the references.
CONCLUSIONS: The results suggest that the PwMS’ earnings are lower than the references’ beginning shortly before MS diagnosis, with this gap increasing thereafter. Besides SA and DP, the results indicate that educational level and type of occupation are influential determinants of the large heterogeneity of PwMS’ earnings.
CoI: multiple
Thank you.
Number 6. Is very important to me. Access to facilities, in my case public toilets. With very few toilets open with the Covid-19 situation, I’m not able to go out very far from home, in case I need the toilet urgently.
This is an isolating issue.
The subject of public toilets being closed and Covid-19 is currently discussed on Radio 4, at 4.45pm today and how restricting this is for people.
People feel trapped inside their homes if they can’t use these toilets when outside, including for people with disabilities. This isn’t just those people who are shielding.
Educate HCPs incl. neurologists better. For 6 years (at least) they missed my slowly exacerbating MS despite (in hindsight) in sum fairly obvious clues.
In total 6 or 7 doctors, two different neuros included (!).
So sad that IRTs haven’t been more widely accepted. My Alemtuzumab treatment 14 years (and 13 years ago) has put my MS in to long term remission – a tiny pill once a day after having my thyroid killed off following Graves Disease is a minor inconvenience compared to the disabling relapses I was having pre Alemtuzumab. I blame the limited take up of Alemtuzumab on:
(1) the drip feeding of papers on rare side effects. These were never put into context ie many of the side effects can be picked up with monitoring and are treatable. The papers were never balanced out with the overall results in terms of most patients getting long term remission, some recovery of function and having near normal brain atrophy rates;
(2) the obsession with patient choice over the knowledge / experience of the health professional. Many patients will always choose a safe therapy with few side effects as they often don’t appreciate what MS is doing to their brains and spinal cord or believe they will be lucky and get benign MS (which I don’t believe exists);
(3) the reluctance of neurologists to be honest about what MS is / does. MS is MND in slow mo. Those with MS after 25-30 years are by and large in a very bad way. The whole point about IRTs is to provide the best chance of limiting the damage from focal inflammation to preserve as much brain as possible for later life. Neuros need to be honest about what MS does even when a patient is on a low / medium efficacy DMT.
“I envisage using IRTs as true induction therapies and following them with targeted maintenance treatments (e.g. antivirals) and add-on remyelination and neurorestorative therapies in the future.”
I look forward to the day when those diagnosed with MS will be offered this combo of therapies with the knowledge that MS will have minimal impact on their lives. But someone needs to start putting the words into reality. When I was diagnosed 20 years ago the MSologists were discussing remyelination and neuroprotective therapies. There is slow and MS research slow. I know it’s difficult stuff, but the advances in technology and imaging etc haven’t been matched by the advances in therapies to tackle progression / increasing disability.
I am not not so sure it is always the patient that chooses the comparably safe treatment. It is just as much the neurologists and the EMA (see the current alemtuzumab quasi ban) that are overly cautious or even scaring the PwMS.
I would have given *serious* consideration to HSCT as 1st line treatment if I could have gotten it where I live (I am not too thrilled to do it abroad considering the logistics involved). I may well revisit that idea as it is potentially available second line.
Excellent assessment on World MS Day 2020.
Several theme emerge: Decisions: on Treatment plan, Work, Activities of Daily Living, How to meet needs.
I want: a Doctor Team at an Academic Medical Center Who are Partnered with Me.
Including Social Worker, Psychiatry and Pharmacists, PT, OT who schedule me in.
I want a Database I can use to monitor issues, prioritize visits, yes, telemedicine.
I want them to keep track of Gadolinium injections and think hard about using “routinely “.
I’m happy with Glatopa and too old to switch? No exacerbations since diagnosed 2007. Information is a blessing and a curse. Thanks for this. Employment a whole other realm. Luckily I was a Nurse and have a pension and decent health benefits. My Social Security not as high if I had not retired Disabled at age 56. A Social Worker could help with Vocational issues like accommodations, refer to Vocational Rehab (in USA) and when to apply for disability benefits.
Is it still worthwhile visiting this blog, as someone with PPMS with no treatment options which would make any sense?
Ocrelizumab available, Siponimod soon (in Europe, US already has it), #ChariotMS in the pipeline. Agree not perfect, but some things are happening!
I fear in the post-Covid19 world, you’ll be more deprioritised.
Nice post
I love the way that you speak out and speak up for us. It is because of the medical profession never bothering to bring up the subject of MS when they treated me for 2 lots of optic neuritis etc that I am now secondary progressive and progressing well! A sort of ‘put to one side’ attitude by both doctors and neurologists which, now, I find extremely upsetting and frustrating. I have fought this long and hard by trying to stay positive and determined to stay walking and participate in clinical trials, but now, age is not on my side and the fights are becoming harder and more exhausting. I so wish that I’d have had an adventurous, out-spoken and honest medical team!
lordy lordy, I’d rather NOT have MS than celebrate “world MS day”
My doc says I’m a depressive realist….no wonder
calledEducation and understanding of this disease is required by the HCP and the patient.
At the end of the day the patient needs to be guided because choice of drugs and the consequences are too big to realy understand. Also the patient will need help to navigate the social help that is available to make their life easier and better
Isn’t this called joined up thinking?
I’m not happy it’s World MS day. Waste of time. Tomorrow will be World Miscarriage Day, Monday will be World Peanut Day, Tuesday will be World Measles Day….
These days treat us like imbeciles. Before MS I had friends because we ran together, played tennis together, watched the same football team, liked a few pints of Guinness in a country pub. Once you get this crap disease you are expected to be super nice, mix with other people with MS, clap along with the poor souls who’ve progressed to needing an electric wheelchair…
I’m not nice, I don’t want to go along to meet some random people I have nothing in common with bar being unlucky to get a crap disease. I was more than MS and the idea of spending my afternoons raising awareness of MS, raising money for MS, or playing bingo while discussing incontinence issues will see me bombing it down to Beachy Head to meet my maker.
The super PC cartoons are everything I hate.
So true. These professionals aren’t seeing it from our side cuz they do not have MS.
The PPMS drugs on the market are only for newly diagnosed sufferers, not us.