Friday, March 16, 2007

The TRUE Cost of CFS

CDC has been espousing the number $9B a year in economic losses due to CFS.  Dr. Leonard Jason, CFS expert, proposes the true number is more than double that estimate.

Is Anyone Out There Listening? The Economic Costs of CFS.

Leonard Jason, L. Valentine, S. Torres-Harding, A. Johnson, M. Benton, N. Porter.

The economic impact of Chronic Fatigue Syndrome in a community based versus a tertiary sample.

We already have an assessment of the indirect costs of CFS - those caused by unemployment, disability, etc. - to the U.S. economy. They came out to a hefty 9.1 billion, yes BILLION dollars a year.

Now Dr. Jason, with his study on the direct costs of CFS - medical costs - is able to give us, for the first time, an estimate of the total annual losses to the U.S. economy from CFS.

These costs are, of course, heavily affected by estimates of CFS prevalence. Dr. Jason's history of prevalence estimates was quite instructive; they started out absurdly low with early estimates suggesting about 20,000 CFS patients in the U.S. Jason's small early 1990s community based study bumped that up significantly (400,000), and his replication of that study doubled it again (800,000). The late 1990s CDC Wichita study confirmed Jason's estimates (800,000-1,000,000) and Jason used 880,000 as the basis for economic cost calculations.

With the direct economic costs added, Jason estimates that CFS costs the U.S. economy a whopping 19-25 billion dollars a year. This is about double the amount that prompted the Japanese government to sponsor a large CFS research program.

These numbers suggest that if the Department of Health and Human Services woke up it would at the very least realize that investing in CFS research makes economic sense and would start funding CFS like the substantial health issue it is. Somebody in the DHHS, after all, wants to know how damaging this disease is - they sponsored the first economic loss estimate (via the CDC) and must have paid for this one too - now if only they would act on it.

With the CDC program winding down and the NIH research program essentially moribund, DHHS spending on CFS could be as low as $10,000,000 - or about what it commits to several very (very) rare genetic diseases.

* * * *

$10M -- that's $10 per patient.  Big deal. 

The Social Security taxes alone on even the erroneous $9B figure (much less the more accurate $25B number) exceed that expenditure by orders of magnitude.  Add in the income taxes, sales taxes, property taxes, etc. that could be paid by returning that million patients to work, and the return on investment is incredible.

Yet, even now that privately-funded researchers are closing in on the biological factors of this disease, the US government refuses to fund a full-scale push to tie these loose ends together.  They'd rather leave a million people sick and draining the economy than spend even 1% of the annual cost looking for a treatment/cure.

Want to know why?  Read "Osler's Web" by Hillary Johnson.  You'll learn exactly why the government doesn't want to find the biological underpinnings of this disease, doesn't want to admit there's a virus at the base of it, wants to pin it all on "stress".  The answer is simple, and self-serving.  It's all tied up in egos and arrogance.

Wednesday, March 14, 2007

Telling half the story with twice the people

One thing that we've noticed is that essentially all the books about living with disability praise to the high heavens spouses, children or parents who attend to the disabled person's every need.

Laura Hillenbrand's inspirational story of writing "Seabiscuit" while coping with severe CFS reveals that Laura wrote much of it with such vertigo that she couldn't sit up (much less stand up to get to the kitchen for a bowl of cereal), so her boyfriend made innumerable trips to the library to get research materials for her.  (As well as seeing to it that she had clean laundry and proper meals brought to her in bed.)

But what of the many people who face disability alone?  Roughly 3/4 of marriages affected by chronic illness break up.  A fellow activist recalls seeing a statistic that the divorce rate is more like 90% when it's the wife who becomes ill.  Most autoimmune illnesses, as well as CFS, strike far more women than men, so that's a lot of divorced patients!

Those millions of divorced women suffer, too, but unnoticed by the media, unable to write books about their plight.  Whereas Laura could stay in bed to write and have food brought to her, at my worst I still had to stumble to the kitchen to feed myself and the cats.  Every bit of energy I had was consumed with essential tasks: cooking, laundry, dishes -- things that the book-writers among us don't have to deal with because they have a healthy person in residence to take care of the chores. 

Another author describes, while she was essentially bedridden, having someone draw her bath, fetch her from the bedroom, help her in, gently wash her, help her out, pat her dry, dress her in a clean nightie, and assist her back to bed, where she collapsed from the effort of having someone else do all the work for her; I read that section with envy -- as much as I love a nice hot bubble bath, if I'm too weak to safely get myself in and out of the tub, I can't take one because I might get stuck in the tub.  If you've ever sat in icy water in a chilly bathtub in a rapidly-cooling bathroom for hours because your feeble attempts to boost yourself out of the tub are unsuccessful, it's NOT something that you want to experience a second time!  That occurred at a time when the person with my emergency house key was out of town, so I couldn't even call for help (not that my male friends strong enough to get me out of the tub would feel comfortable seeing me wearing nothing but bubbles).

Laura had a boyfriend who went to the library for her.  As I was getting progressively worse, I bravely accepted a quick research/writing project which required a trip to the library.  I spent the next week horizontal, recuperating from a three-mile round-trip, for the first several days so exhausted that I couldn't concentrate on the books that I'd brought home.  I knew the books were written in English, but when I picked them up they appeared to be written in Russian.  The alphabet looked foreign, and only with the utmost effort could I pick out one or two words on a page.  If only I'd had someone to make that trip to the library for me, I could've taken on more such projects, but it's hard to make a living when you need to take a week off every time you venture out of the house to get more research material.  (Obviously, being in that condition makes it darn hard to get a boyfriend who will make those trips for you, if you didn't have one already before you got sick.)

When I'm sick, no one empties my barf bucket (except me).  No one places a cold compress on my head while they go to the kitchen to cook up a nice organic, preservative-free chicken soup to nourish me back to health.  No one even brings me a glass of water.  If I'm too sick to get out of bed, I do without food and water, which is no way to get better.  But I have no choice.  I have no spouse, no children, no siblings, my parents are 3000 miles away with their own health problems, and my former girlfriends always claim to be "too busy" when I call to ask for help (they all have full-time jobs, most have both husbands and children -- all have at least one or the other -- so it's a plausible excuse).

I've learned to keep a box of cereal bars or PopTarts under the bed and a couple bottles of water in easy reach, but if being bedridden lasts more than a day or two, those supplies run out and there's no one to replenish them.

And without a husband, the only money coming in is the few hundred a month that I can earn working part-time.  There's no extra money to hire help, finances are a constant worry (so much for the doctors telling me to reduce stress!), and I have to work as much as possible to keep the bills paid, which means less time available for writing books (which might be more lucrative in the long run, but don't bring in any money till they're done or almost done).  I've reached the point of having a steady clientele, and turning down work that pays now in order to write a book that may or may not bring in some money later seems foolish.

I had to accept substandard medical care because there was no healthy person to strenuously advocate for me; I could make feeble protests, but gave up after a minute or two because I didn't have the energy to keep arguing.  Obviously, there was nothing even mildly threatening about a woman collapsed on an exam table, as opposed to some of the more visible patients who tell stories about large husbands making viable physical threats against recalcitrant doctors.  They knew they could easily out-stubborn me because I wouldn't have enough energy to pitch a prolonged battle over treatment (or lack thereof).  There was no husband to pick me up and carry me into the doctor's office on my worst days to show them what I'm like when I'm not well enough to get myself there on my own, so they had a skewed picture of what I'm like most of the time because they only saw me on good days, after I'd rested up for a week to ensure that I could get to the appointment.  There was no one to spend hours calling around to find a lawyer willing to take the medical malpractice case when I had deteriorated from lack of proper treatment to the point that I was almost totally non-functional.

The point is, next time you read one of those inspirational books about living with disability, consider how much actual "hardship" is involved when the household has a steady paycheck coming in from a healthy spouse, and healthy children available to run errands and provide caregiving, vis-a-vis the innumerable "silent majority" among us who are facing disability with no money, no help, no caregiver. 

Those books wouldn't be written, and their writers wouldn't be so cheery about coping with a major disability, if they were in the shoes of the millions of disabled people who are forced to do everything for themselves no matter how sick they are, or how much pain they're in.


Monday, March 12, 2007

Disproportionate Research Funding

Parade Magazine was asking for comments to be sent to Congress about healthcare in the US.  Here are mine:

Gross imbalance between cost of illness and research funding

By CFSfacts on 3/12/2007 2:46:PM

A million Americans suffer from Chronic Fatigue Syndrome, known as Myalgic Encephalomyelitis in the rest of the English-speaking world. The symptoms are very similar to MS, and some researchers believe the same virus is implicated in both conditions. CFS affects more than twice as many people as MS.

A very conservative estimate is that CFS costs the US economy over $9B a year. Yet, only about $6M a year is devoted to research that might get these million patients back to productive work.

If only 1% of the lost productivity were budgeted to finding a viable treatment/cure for CFS, far more than that investment would be repaid in taxes when that million people return to productive work.

I have been told that because I wasn't given effective treatment promptly, the physical deterioration is now too advanced for me to ever return to full-time work. Instead of my paying taxes on nearly two million dollars of earned income over the rest of my working life, I will spend the rest of my life working part-time, earning below the poverty level and paying no income taxes at all.