The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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How much does having CFS cost?

Discussion in 'Finances, Work, and Disability' started by Robin, Jan 18, 2010.

  1. Robin

    Robin Guest

    Discussion in another thread about got me thinking about the financial burden of having an incapacitating chronic illness. The cost affects the government, the patient's family and supporter, and the patients themselves.

    Using myself as an example, I'm an American who became disabled in my early 20s while I was in school and I'm 35 now. I worked nights, weekends and summers while I was a student so I qualified for SSDI but I hadn't accumulated savings or ever had disability insurance. I got deferments on a few small federally insured student loans which the government paid off. Though I don't qualify for Medicaid now, I've been on that, and used housing subsidies in the past. Currently I'm in a Medicare Savings Program which pays for the Medicare Premium and prescription drug coverage, an Advantage Plan (another subsidy). Every time I go to the doctor, the government pays. I pay no taxes except sales taxes, and my income on SSDI is below the federal poverty guideline. Right now I live with my parents because of a relapse. My boyfriend and I are planning to get married in a few years if my health permits, but, because of my lack of meaningful income, he's living with his parents to save money to offset our future mortgage.

    Assuming I would have had a successful career, the government has missed out on over a decade of my federal and state income taxes, FICA, Medicare, etc. I would have probably owned property at some point so there are property taxes I'm not paying. I don't own any securities so I don't pay those nice capital gains or dividend taxes. Hell I don't even have a 401(k) or much in the way of savings. And, since I have a Target budget, I pay Target sales taxes, not Neiman Marcus sales taxes. ;) The bulk of my income goes to non-taxable items: food.

    Ultimately,the fourteen year duration of my illness, between the actual and opportunity costs, my case of CFS has cost the government hundreds of thousands of dollars. I've missed out on well over a million dollars in wages and (ahem) investments.

    Even the CDC acknowledges that CFS has a huge cost to the economy. The argument has been made that if XMRV--->CFS, then antiviral treatments would impose a huge cost. But, we were productive and working again, at least some of that would be shifted to private insurance OR offset by your tax return (if you live in the UK).

    Remember that the NIH spends only $3 million/year on CFS which probably directly costs the government hundreds of millions of dollars, and the economy billions, a year. It's absurd!

    How much has CFS cost you or your family? How do you get by?
  2. Hope123

    Hope123 Senior Member

    Hi, Robin,

    My story is similar to yours.

    Aside from the costs you mention, the cost of going to doctor to doctor, buying meds/ supplements, additional blood/ other testing is also a heavy burden whether it is paid by the government or by individuals.

    The latest figure out (2008) for direct and indirect costs annually due to CFS is $18-24 billion in the US (much more than the $9 billion by CDC in 2006).

    Ref for those interested: (can be found for free on net)

    The Economic impact of ME/CFS: Individual and societal costs
    Leonard A Jason1 , Mary C Benton2 , Lisa Valentine3 , Abra Johnson1 and Susan Torres-Harding4
    Dynamic Medicine 2008, 7:6doi:10.1186/1476-5918-7-6
  3. charityfundraiser

    charityfundraiser Senior Member

    SF Bay Area
    So I guess they came up with a figure of average $20k per year per patient. I'm not sure how they calculated that but using myself to illustrate shows a wide variation.

    Potential loss of ability to work from age 29-65, ie. 36 years. Multiplied by average yearly income, 120k. (That is pretty average salary for white collar professional around here.) = $4.32 million
    Sibling taking a few days off per year to drive me to doctors' appointments = $1000/day * 3 days/year * 36 years = $108,000
    1 year State disability insurance = $45,000
    Mother acting as caretaker = some amount not sure how to calculate
    Loss of investment income from savings from above income = millions

    I conclude the federal government will lose about $3 million in direct tax revenue from me alone over my lifetime, not to mention GDP. So only spending $3 million/year on CFS is ridiculous.
  4. muffin

    muffin Senior Member

    BINGO!!! The CDC woefully underestimates the real financial loss due to CFIDS. My husband looked at their numbers and was astonished at how low and inaccurate they were. I was NOT surprised as it is in the best interests of the CDC/CFS people to show that we are expensive loss but not nearly as expensive as we are. The numbers should be much, much higher on the loss of our incomes and the cost of our care. I would think it would be far more cost-effective to spend the money on heavy research than to bear the huge loss of our incomes (and taxes) and our medical/living costs. Again, another odd clitch in the CDC/CFS data and data analysis that makes me wonder why they so underestimate our loss and cost to the economy. I would guess if the true numbers came out on this one too, the public and Congress would sit up and take real notice. And the CDC/CFS people DO NOT want that notice taken.

    My lawyer did figure out what my loss of wages was for SSA purposes. She also came up with numbers for how much has been spent on my medical care by using the info from my insurance company and the print-out I had from the Pharmacy where I got all my medications filled. The medications alone were over $150K for just 7 years of illness and that did not include all the other stuff I had bought along the way to try to get relief for pain, sleep, energy, etc. I have two graduate degrees and was about to start on the last two courses for my doctorate (test and then write dissertation) but I got sick before I could start the last two courses. Given the senior level I had achieved in private industry and where I would have projected upwards, she was shocked at the loss of income I had and would sustain because of this disease. It makes a great case for SSA and also those that want to blame us for being lazy and living on the dole. But the numbers for me were "easy" since I had been working for a goodly amount of time and it was possible to do a projection on income. What is almost impossible is to figure out what the young have/will lose given this disease. No track record to project from and no way to guage loss of potential. Really makes me nuts to see the young ones sick with this - so much loss of great potential and of course, a nice normal life. Kills me...

  5. Carrigon

    Carrigon Senior Member

    PA, USA
    My mother spent over thirty five thousand dollars on my health when I got sick, over the course of the first one to five years or so. And after that money was spent, I still didn't have my health and all her life savings was gone. We spent on specialists, supplements, all kinds of stuff.

    My ability to not be able to work did contribute to alot of hellish things that happened in our lives, losing homes, getting into bad situations because we didn't have enough income. Whereas, if I had been working, we would have had another income and I believe it would have helped.

    So many things were not covered by insurance and still are not. None of my supplements have ever been covered by insurance. Alot of the specialists we went to insisted on cash payments for the first visit and those visits were always hundreds of dollars.

    The monetary loss from this disease is just monumental. My mother died with nothing. No life savings because she spent it all on trying to get my health back. It's just unfair and horrible.
  6. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Has anyone found any good articles so we can make cost comparisons (in terms of money spent and societal cost) eg for AIDS, cancer, diabetes, Influenza etc
  7. CBS

    CBS Senior Member

    What has been lost that I most value cannot be out into monetary terms.

    As for the $20K/year, from where I sit, that's a laughably low number.
  8. Misfit Toy

    Misfit Toy Senior Member

    I don't have the brain power to actually figure out a number on how much has been lost. My mother helps me financially. I would say she spends around $13,000 on me a year. I would guess hundreds of thousands of dollars between docs, meds, supplements, mercury removal; a ton of money. A NICE HOME.

    She helps me on top of me having SSD and still working part time. I feel like every cent I earn goes to doctors. I went to a doctor today that cost $192.00 out of pocket. I have no prescription coverage so that is a whammy at times. I try and buy organic.

    I really don't know.
  9. BEG

    BEG Senior Member

    Southeast US

    Yeah, you're right, CBS. I'm fairly certain it refers to lost wages, and that's what makes it so darn funny. :tear::Retro mad::tear: Why hasn't that number ever changed?
  10. BEG

    BEG Senior Member

    Southeast US
    Here is an explanation of the $20,000 on the CDC's website.

    Childhood trauma and risk for chronic fatigue syndrome: Association with neuroendocrine dysfunction (Laughable, too)
    Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves WC
    Archives of General Psychiatry 2009; Vol. 66 (1): 72-80.

    CFS affects up almost 3% of the US adult population. A quarter of those suffering the illness are unemployed or receiving disability and families in which a member has CFS loose about $20,000 annually in earnings and wages.
  11. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    I still, think this is an interesting topic, so I'm asking for more replies..
  12. Wonko

    Wonko Senior Member

    The other side.
    it's totally free - in fact it even saves you money - no more money spent on drinking/smoking etc - no more wild nights out - no more hobbies eating up your money - no more junk food - it can be very cheap to live if you never go out or do anything - and as there is no treatment (in the UK at least) it costs nothing medically

    which is fortunate - as if you have ME you probably wont have any income

    (sorry - couldnt resist)
  13. willow


    East Midlands
    Wonko, you made me laugh out loud! So true

    My husband always says I'm cheap to run, but whether he'll say that when he's out of work too......

    Seriously apart from the nil income (ok a huge, huge cost) living costs themselves apart from Winter heating bills are far less. For the last 15 months health costs have been 30-55pcm, but no alcohol, junk food, entertainment, car, work wardrobe etc.

    ETA Most of the time I've been ill I haven't had the money to pay for treatments. Then when I had money and feeling depserate I spend and effectively bought a few docs/practioners holidays, cars, trampolines for their kids etc. None of it did me any good, most made me worse, so around 2 yrs ago I swore off everything... Until I was persauded to see the 30-55pcm practitioner who surprisingly is doing me some good. If I'd have started treatments as soon as I'd become ill the adverse effects might not have been obvious and perhaps I'd have spent oodles more.

    Healthy food, personal care products etc these would be part of my life with or without ME etc

    Never having been well enough to work a proper job, in the last 12 yrs any job at all, or even come close to achieving my potential at school, I have no clue what I'd earn. But certainly hope it would be more than
    $20 000pa
  14. kevinchaapel

    kevinchaapel [banned as spam]

    The first step in deciding whether or not to have a baby is establishing that both partners want one. If one of you wants a baby and the other doesn't it can be a very hard situation where resentment and problems within the relationship can arise."The CFS" includes an organization called CFS-Services, which is individually incorporated as a non-profit and exists on paper as a completely separate entity, but shares most of its board, staff and office space with CFS National. A note to the financial statements explains:

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