Wednesday, 16 May 2018

The Cost of MS is more than just your Health

Last week, we said that Neuros could supplement their income from pharma-related activities.

Next there was a flurry of emails, asking for disclosure of how much, if anything, I get from MS pharma and elsewhere.

Having skirted round the issue, as I am not discussing my personal life, the question is what happens to your income?

Whilst on an individual level, I think it is none of my business, but as I am sure you know, MS does not just cost you your health...but also your wealth.

Even more reason to make sure you deal with MS as best you can as early as you can.


Landfeldt E, Castelo-Branco A, Svedbom A, Löfroth E, Kavaliunas A, Hillert J. Personal Income Before and After Diagnosis of Multiple Sclerosis. Value Health. 2018;21:590-595

BACKGROUND:

Multiple sclerosis (MS) is associated with serious morbidity and labour force absenteeism, but little is known of the long-term impact of the disease on personal income.

OBJECTIVES:

To assess long-term consequences of MS on personal salary and disposable income.

METHODS:

Patients with MS in Sweden were identified in a nationwide, disease-specific register and matched with general population controls. We assessed mean annual personal gross salary and disposable income each year before and after index (i.e., the MS diagnosis date) using data from national registers.

RESULTS:

The final sample consisted of 5,472 patients and 54,195 controls (mean age 39 years; 70% females). There was no significant difference in gross salary between patients and controls in any year within the pre-index period. In contrast, on average during follow-up post diagnosis, patients with MS had €5,130 less gross salary per year compared with controls, ranging from a loss of €2,430 the first year to €9,010 after 11 years. Within 10 years after index, 45% of patients had at least one record of zero gross salary, compared with 32% for controls. Mean annual disposable income was comparable between patients and controls across follow-up, with significant differences only at years 9 and 10 post-index.

CONCLUSIONS:

We show that many patients with MS in Sweden lose their ability to support for themselves financially but still have a relatively high disposable income because of social transfers. Our findings underscore the detrimental impact of MS on affected patients and the considerable economic burden of disease to society.

Whilst the figures are based on Scandi-health and may not be relevant to your particular country. It says that once diagnosed, eventually you are going to earn less and you are more likely to become unemployed. If you have a working social care system then there is some compensation for this

9 comments:

  1. I felt let down by your attitude on transparency. If it was a Tory MP or some big businessman greasing their palms you would be ranting. What I would like to see is a system where NHS doctors, medical academics employed in the public sector and medical researchers employed in the public sector have to disclose each year how much they get paid (income or benefits) from commercial companies. This could be done in a banding system by bands of £25,000. I note that Prof G lists his COI at the start of his presentations, but all this is is a list of companies - I have no idea if it amounts to a few thousand pounds or hundreds of thousands of pounds. I think you underestimate how distasteful this might be for some people with MS. If you and others have nothing to hide, then a proper disclosure system would let others judge. MS is a vile disease and it leaves a bad taste in my mouth that those working in the field are getting handsome rewards from companies which then charge our health system huge amounts of money for drugs with limited efficacy.

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  2. We needed a study to tell us this?

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  3. The “I’m not discussing my personal life” (ie: how much I earn) attitude is so prevalent in Britain that it’s hardly worth commenting on, and I will make only one comment – it’s a shame that people are so defensive about these things. After being diagnosed for 25 years, now being SPMS and seeing my life reduced in so many ways I have no reason to be secretive – I have nothing worth hiding. For an average SPMSer like me the question is not: how much do I earn but how little? For the record I am self-employed and have just filled in my tax return for 2017-2018 and my business income for those 12 months was £7,178.83. Over to you MouseDoctor. Ian Cook www.mymsprogblog.com

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  4. "Whilst on an individual level, I think it is none of my business,"

    Of course no,you dont have ms ,its not your problem :( :(

    What this study show is a tremendous amount of wealth beenig tranfer

    between patients wealth, social security ,and pharma and their the

    top neuros that sign their research paper

    Every new Pwms diagnosed is a new income for those "Dollar for docs"

    neuros

    I really admire your work and dedication and competence

    Regarding Coi i thing is not fair to say that earning money from

    pharma to prescribe a drug is diferent in the Us as in Uk

    Those figure should be public in the Uk as they are in the Us

    This suggest that " I am not discussing my personal life" attitude

    (regarding possible Coi) .You dont want to have nothing to do

    american transparency

    I think is the right with any Pwms to know the amount of money their

    neuro is receving from pharma to presbribe drug A.b.c.e.d

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  5. I see 2 major problems MD in my experience:

    Firstly, Pharma pays up to 27% of their whole budget to trying to entice physicians to sell their drug. It is very naive, ignorant and downright dangerous to think that the money given to physicians does not change their prescribing patterns to their trusting patients. Whether or not the patient was getting the best drug (or not) was of no matter.

    Some physicians have the moral fibre to do the right thing, do their research and select the best drug for their patient but many don't. Many physicians are too busy or lazy (or both) and trust their pharma rep's biased data or a "paid puppet" physician and end up prescribing that specific drug anyways.

    The second problem is that these COI physicians should not be on any research steering or funding committees, charity board or governing body approval boards. This should left up to physicians or researchers that are not conflicted or biased when it comes to decisions that should be in the best interest of the patients.

    It is an honour, not a privilege, to be a physician and we are paid very well without conflicts of interest and decisions regarding patients should be in the patient's best interests only and not in the best interest of Pharma and the financial gain of some physicians.

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  6. I am moderately disabled and no longer work due to mainly fatigue. If modern medicine could effectively deal with fatigue, I believe I could at least work part time again. I am 35 and from the US, and I was making about $50,000 annually. I am now applying for disability and if I get approved, my income will drop to about $12,500 annually. Having MS sucks bad enough, but then having your income drop by 75% is just adding salt to the wound. At least I live in a state that expanded Medicaid so I at least get health insurance :)

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  7. Most NHS hospital trusts expect doctors to declare on a website about any financial conflicts of interest. This should be publicly available.

    Doctors are not paid to prescribe drugs but are paid to do work for drug companies. A days work for a days pay is only fair. Pharma don't meet patients but do need to understand patients. Drugs will only work and improve and help patients/society if pharma get feedback from clinicians.

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  8. I wholeheartedly agree. GG - break the mould. I very, very dare you!

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  9. Well here's my guy: https://projects.propublica.org/docdollars/doctors/pid/353758

    I made 38K the year I was dxed and I made $57 last year. It really doesn't matter though, since I'm impoverished inside and feel my future is bankrupt. At least the drug companies bought this guy a new shore house and a sportscar, at least someone's enjoying themselves.

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