Doom and Gloom in the wake of Santa

Kavaliunas A, Wiberg M, Tinghög P, Glaser A, Gyllensten H, Alexanderson K, Hillert J. Earnings and Financial Compensation from Social Security Systems Correlate Strongly with Disability for Multiple Sclerosis Patients. PLoS One. 2015 22;10(12):e0145435. doi: 10.1371/journal.pone.0145435. eCollection 2015.

BACKGROUND: Multiple sclerosis (MS) patients earn lower incomes and receive higher benefits. However, there is limited knowledge of how this is correlated with their disability.
OBJECTIVE:To elucidate sources and levels of income among MS patients with different disability, assessed with the Expanded Disability Status Scale.
METHODS: A total of 7929 MS patients aged 21-64 years and living in Sweden in 2010 were identified for this cross-sectional study. Descriptive statistics, logistic and truncated linear regression models were used to estimate differences between MS patients regarding earnings, disability pension, sickness absence, disability allowance, unemployment compensation, and social assistance.
RESULTS: The average level of earnings was ten times lower and the average level of health- related benefits was four times higher when comparing MS patients with severe and mild disability. MS patients with severe disability had on average SEK 166,931 (£13, 350) less annual income from earnings and SEK 54,534 (£4,360) more income from benefits compared to those with mild disability. The combined average income for MS patients was 35% lower when comparing patients in the same groups. The adjusted risk ratio for having earnings among MS patients with severe disability compared to the patients with mild disability was 0.33 (95% CI 0.29-0.39), while the risk ratio for having benefits was 1.93 (95% CI 1.90-1.94).
CONCLUSIONS:Disease progression affects the financial situation of MS patients considerably. Correlations between higher disability and patient income were observed, suggesting that earnings and benefits could be used as measures of MS progression and proxies of disability.

Whilst Santa may have come from Scandernavia with good news, this is not so good news  and shows how MS can affect our capacity to work and as you become more disabled there are higher costs in benefits

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  • For those who have an interest in such research several of the articles on this webpage may be of interest: Impact
    See publication links under Heading No 1 Employment Surveys, No 2 Economic Impacts of MS, and No 6 Needs of Australian with MS. They make sobering reading, and in my mind should be mandatory reading for those whose apparent aim in life is to do what they can to restrict access to MS medications, or those who think that MS is not a serious disease.

    For any Aussie followers of this blog – if you are not signed up for the AMSLS ongoing survey from which the above reports have been drawn – why not do so and contribute your 50 cents worth of data. The more voices that are heard the better.

  • Economic impacts of many chronic diseases and employment is an issue that is going to rear its head soon enough. Across many chronic diseases medications costs of research, bringing them to market costs, equalization of costs and long-term outcomes.

    These are far far more complex issues than most people understand. I've gotten quite the education on it past few months. The perceptions .vs. realities. Existing older MS med's for example price hikes are viewed as Pharma gouging. In reality there is a form of rebate system so insurers are not masaquered. In part due to cost. If your an MS patient do you want your insurer to say, "Sure Avonex is fine, but the cost of whatall, Ocrelizumab is out" or start writing policies based on diseases and risk pools based on lifestyles and/or disease progression. Thats only a smidgeon of the larger picture.

    Towards employers and insurer systems due to wild variances of variables and completely unpredictable nature of new treatment options, research and sheer speed things are happening at? Creates a big issue again with insurers and systems.

    Insurance in general is part statistics, part gambling and in part factual knowledge. Clinicians dont talk about this stuff and rightfully so. The care systems / insurers are not in place to inform patients or news media how they are able to get meds into patient/client hands or that of clinicians. Governments are well aware and regulatory measure and/or lack thereof (in appearance front facing) work to slowly steer. Sure, some companies take advantage of it.

    Best outcomes in MS and other chronic disorders is based not only in medications but lifestyles as well. Those are hard if not impossible to legislate. Those are hard to try make employers want take into their fold.

    MS is a serious disease among many many serious diseases.

    Its important that people know this. Its quite natural for people with MS to think near solely about MS just as is the case with someone with Lupus, Fibro, Cancer or Parkinson's. Reality is there are lots of ill people with chronic disorders MS being one among those many. Because we have MS does not mean the insurer, pharma, governmental, clinical or research systems revolve around MS. In fact, chronic diseases revolve around each other to an extent. Its not like every piece of revenue made from an MS med goes back to further MS research, or profits, or stakeholders. Money floats into other chronic disorder research, meds and care systems.

    Employment is an interesting issue in chronic diseases for example. While all forms of organization wish report on the problem very very few are doing anything about it. They expect businesses to bend and quite possibly bare sized business burden for people with disabilities. Yet many of these folks refuse embrace a lifestyle that can make a big difference in their outcomes. Further, while again lots of places point out employment matters few spend a red cent to help re-educate people with disabilities to have better employment prospects.

    I am not picking on them its just a fact.

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