Background: MS is a common cause of neurological disability in young adults. The TRIBUNE study provides a detailed exploration of costs in relation to relapses and disease severity, and assesses the quality of life impact on MSers in terms of utilities, fatigue and activities of daily living (ADL).
Methods: MSers in five European countries (France, Germany, Italy, Spain and the United Kingdom) completed a self-administered web-based questionnaire capturing information on demographics, disease characteristics and severity (EDSS), co-morbidities, relapses, resource consumption, utilities, fatigue, and activities of daily living.
Results: In total, 1261 MSers completed the questionnaire. More than half of the MSers (68%) had the relapsing-remitting form of the disease; 87% of the sample reported receiving MS treatments. Costs were higher with advancing disease severity; for mild MSers (EDSS score ≤ 3) the costs ranged between €13,534 and €22,461 across countries; for moderate (EDSS score 4 – 6.5) between €28,524 and €43,948; for severe (EDSS ≥ 7) between €39,592 and €65,395. Relapses were also associated with increasing costs; the difference in the cost per MSer per year for relapsing-remitting MSers with EDSS score ≤ 5 that did experience at least one relapse during the past 12 months and those who did not ranged between €3321 and €9430. The quality of life of MSers decreased with disease progression and existence of relapses.
Conclusion: The TRIBUNE study provides an important update on the economic burden of MS in an era of more widespread use of disease-modifying therapies. It explores the cost of MS linked to relapses and disease severity, and examines the impact of MS on additional health outcomes beyond utilities such as ADL and fatigue.
Come on Prof G, the Government only has a '5 year' vision. What you're suggesting is a long term ambition and the costs are far too high.In all honesty there is an argument that remyelination treatments will probably be funded more generously by the NHS because there is a visable improvement if it works. To argue that by taking an expensive drug the MSer is unlikely to progress, is different from saying that by taking a new treatment the disabeled MSer is likely to regain some lost function, but even then there is a huge question mark hanging over just how much lost function can be regained and at what cost?As I understand it, an MSer needs to have two relapses in a year to qualify for basic DMD treatment. The new and improved drugs will only be given as a second line option, meaning all else must have failed.By then the damage is in full swing. Progression is already happening. Even now most new MSers will become progressive. In all honesty, is the rate of progressive MS going down because of current DMDs? No, not really because most will become progressive.We need new and better drugs. Not just inflammation but also treatments to protect damaged nerves and maybe even improve them. That kind of approach will get better backing from Government.
Re: "the Government only has a '5 year' vision. What you're suggesting is a long term ambition and the costs are far too high."By saying this you are admitting that the problem is political. In other words it can be fixed. Political problems are about education and lobbying. Are you up for it? If we can convince the government that the best use of their money is preventative medicine they may listen. Who is up for starting a lobby for MSers to access aggressive therapies, as early as possible in the course of their disease, to prevent or delay the onset of progressive MS?
Prof G, I have PPMS. I know it sounds bad but my main focus is on me right now. I kind of feel that RRMSers are well looked after and have considerable options.However, if ever a treatment for PPMS comes about I will crusade for drugs in a way that I don't think RRMSers are willing to do wantedly. PPMSers are desperate for something that works and will fight for access to it.Like I said in my earlier comment, a treatment that can encourage some form of remyelination is likely to attract better political support that a preventative medicine. But that's still a pipedream and early/ aggressive treatments are an expensive reality. It's easier to impress NICE with a drug that may reverse some damage than an abstract drug that may prevent damage. That's the reality, I guess.
Re: " That's the reality, I guess."Thanks for the comment. All MSers need to lobby NICE to change their brief, i.e. to include indirect costs in their cost effectiveness assessments. Unless we include societal costs, e.g. loss of employment, need for a carer, social support, etc. expensive, but effective drugs will not be given the green light. The reality is that we are in an era of expensive drugs, they will not get cheaper. Therefore we need to prepare the ground for remyelination therapies and make sure PPMSers can get them under the NHS.
Thanks for your response Prof G. Yes, it is essential that the powers that be ensure the foundation of access to remyelination therapies for PPMS are in place when such medicines become available. I hope that your peers and you have strategies to how best to apply licensing (PPMS is an orphan disease, is it not?) and are already negotiating with NICE in order to speed the course of bring these drugs to market.Lobbying is all fine and well, however, last month the English Department of Health published its corporate plan and MS isn’t mentioned in the Plan. Neither is neurology by name. The only health conditions mentioned by name are: cardiovascular, respiratory and liver diseases, cancer, stroke and dementia. MS is not a priority despite hardened lobbying by trusts, societies and political lobbyists.MS is lacking in profile. Wishy-washy actions thus far have been fairly meaningless. I live in Maidenhead and despite letters to Theresa May; MS is not a real concern to government. Really, institutions like Shift.MS, with its growing following, should be encouraging members on their site to lobby, but so far they have done nothing, yet they still ask for donations in the name of helping MSers. Neither the MS Society nor MS Trust are encouraging lobbying. There is such a lack of vision in MS campaigning and that’s why MS remains so problematic.The era of expensive drugs is unfortunate. The lack of revolutionary drugs is even more depressing. I can only hope there are better breakthroughs on the horizon that warrant expedient licensing by the NHS.
Re: "PPMS is an orphan disease, is it not?"Unfortunately, not officially. It is classified as being part of MS. If a treatment is shown to be effective in PPMS and not in other forms of MS it may sneak in as being an orphan disease.