Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Compadres in Scarcity: the Bottom of the Barrel at the NIH

Discussion in 'Action Alerts and Advocacy' started by Cort, Oct 10, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    WellBottom..jpg As the CFSAC meeting and our continual quest for real funding gets underway its important to understand what kind of disorder the NIH believes CFS is. One way to do that is to look at other disorders theyve decided are also worthy of little funding. Remember being put in math class as you entered Junior High based on your testing scores; you could either be in the accelerated class, the average class or the behind class. Lets take a look at our partners in the behind class.

    There are about 30 disorders that are more or less the clear bottom feeders at the NIH - stuck at less than 15 million dollars a year in funding. If you took at a look at them some patterns do begin to appear; diseases that get poor funding at the NIH are usually either rare, minor or strike women.

    Facts on CFS to keep in mind
    Affects from 1-4 million people in the US (@1/100-300 people), causes high rates of disability and costs the US economy around 20 billion dollars a year in economic losses​

    Total NIH Funding/year - $5 million

    The Absolute Bottom of the Barrel at the NIH - (<5 million dollars a year) - CFS enjoys the company of a weird mishmash of rare, old, minor or other disorders and conditions. They include such things as allergic rhinitis (hay fever), DES (4 million), Facioscapulohumeral Muscular Dystrophy, hepatitis A (hepatitis C gets 100 million), Pagets Disease, pelvic inflammatory disease, Picks disease and vulvodynia (clocking in at $1 million) - all of which get under 5 million dollars a year. Lets take a quick look at ME/CFSs allies in poverty.

    Mostly Rare Disorders - DES is a drug that caused awful to fetuses forty years ago and has not been used since. Studies are now focusing on third generation effects on the drug. Facioscapulohumeral Muscular Dystrophy is a rare form (effects7/100,000 people or about 20,000 people) of muscular dystrophy ($70 million/year). Hepatitis A is a serious disorder that is, nevertheless, almost completely contacted by US citizens when they travel outside the country and is rare inside it. Picks disease is a very rare neurodegenerative disorder. Pagets disease is a bone disorder that sounds like it should get more money. Hay fever, of course, is just hay fever.

    Womens Disorders - Pelvic inflammatory Disorder and Vulvodynia are in much the same boat as CFS; both are womens disorders that are fairly common, cause high rates of distress and are virtually ignored by the NIH. PID causes 100,000 women to become infertile every year. Vulvodynia is characterized by chronic pain in the vulvia that has defied explanation causing many women to be told the pain is all in their head. It, like CFS, may be associated with Herpes infections. All are hard to characterize.

    The Next Step Up - Next up in the great losers of the NIH series ($5-15 million/year funding) are more of the same - mostly rare disorders or, if theyre not rare, then they are, yes, female disorders.

    Mostly Rare Disorders - Batten Disease is a rare neurodegenerative disorder that effects 2-4 people/100,000 and gets $6 million/year. Retts Syndrome is a rare autism-like disorder (4 per 100,000 people) whos budget, nevertheless has doubled over the past five years to $10 million/year. Mucopolysaccharidoses (MPS) (7 million/year) is a group of 5 very, very rare metabolic disorders (none affecting more than 1/100,000 people, one of which affects 1 person!) that has somehow managed to attract 40% more funding every year than CFS - which effects at least a million people. The budget for ataxia telangiectasia which affects all of 3 people per million (200 in the entire US) managed to increase by fifty percent over the past five years and now receives almost three times as much money (13 million dollars) as CFS. Thats $60,000 a year spent on every AT patient vs about $5 a year on everyone with CFS.

    Female Disorders - This rung of the ladder is loaded female disorders -Some are relatively rare; anorexia nervosa (8 million/year), for instance is a well known but relatively rare disorder (10/100,00) effecting mostly women. Myasthenia gravis is a rare autoimmune disorder clocks at 7 million a year and mostly affects women between 20 and 40 years of age.

    But then there are the common female disorders and here the story can only be described as tragic. Interstitial cytisus is a mostly female urinary disorder whose budget has dropped by over half in the past five years (to 12 million/year)..yet could effect up to ten percent of women. Endometriosis, is a painful gynecological condition affecting from 5 to 10% of American women, which receives all of $16 million dollars a year, or about $1 per year per woman. (Your pain is much appreciated!).

    Shockingly, funding for the second the most common autoimmune rheumatic disorder in the US, Sjogrens syndrome, which is almost completely dominated by women, is not even listed. Of course, there are the fibromyalgia patients - all 10-15 million of them, gleaning from the federal government a grand total of 12 million dollars a year at the rate, again, of about $1 per patient a year). Add in female dominated chronic fatigue syndrome (1-4 million/ $5 million a year) and you have an ugly, ugly pattern.

    Thank you, Uncle Sam!

    Hence the CAAs Campaign to End Pain in Women working with Interstitial Cytitus, Endometriosis, TMD and Vulvodynia groups to increase research funding for some 50 million women the NIH is largely ignoring.

    Conclusion- It appears that womens rights still have a ways to go in the medical arena; the low priority conditions for the NIH tend to be either very rare conditions or common difficult to understand conditions that strike mostly women. The good news for these under-served mostly womens disorders is that they are common; if support groups can bring those numbers to bear on the political process they should, like other womens conditions in the past, increase their funding.

    What to do?

  2. jspotila

    jspotila Senior Member

    Excellent compilation of this info, Cort! And YES to the action steps!
  3. Cort

    Cort Phoenix Rising Founder

    I was really surprised to see how many female disorders littered the bottom of the barrel there! And yet it makes me hopeful as well because there are alot of sick people out there who are not being served - and should be - potentially there is alot of power in those numbers.
  4. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    Diseases that kill women get at least *some* attention, but the ones that just make women suffer? Eh, it's normal for women to suffer. Always complaining about something, right?

    Don't mind me, I'm in a cranky mood, but I'm quite serious. Nobody considers it a general societal emergency when women are in pain.
  5. anciendaze

    anciendaze Senior Member

    Cort's post on "Compadres in scarcity" covers some other conditions, with poorly-funded research, affecting substantial numbers of people. He makes a point that many affect women more than men, presumably because they have less control of medicine.

    I think the general principle is not simply male versus female, it is that doctors don't want to treat some things and will use any vulnerability in the patient to avoid admitting ignorance and professional impotence, which weakens authority. They also depend on patients unwillingness to discuss highly personal matters to keep them isolated. Sufferers need to realize they have a great deal in common.

    Here is an example. When I looked up "interstitial cystitis", (to get the spelling correct,) I noticed that substantial medical opinion now considers this equivalent to "chronic non-bacterial prostatis".

    "Gee," I think, "I've been there." Symptoms include:

    The list of dietary restrictions is already familiar from personal experience. ("No, thank you, I don't care for horseradish.")

    One patient I know had such urinary frequency he developed diabetes insipidus. (I'll bet he's had the patronizing "all in your head" discussion repeatedly.) Now, with the discovery of a virus infecting 27% of prostate cancers, and strongly suspected of affecting the autonomic nervous system, there just might be another explanation. Is anyone interested?

    What else could be covered under this umbrella?

    How many of the above are familiar?

    This is just one minor aspect of this hydra-headed monster. What we see are large numbers of patients enduring a great deal of discomfort, not to say pain, to the point they will seek surgical relief. This is business-as-usual for physicians. The status quo is less acceptable to patients.

    When I looked up the genes correlated with these problems, I found the gene map locus 13q22-q32. While this covers considerable territory, tentative links to other problems are densely clustered in that region. We also find ADHD and ASD on the list, with other indications of links to primary psychiatric diagnoses of schizophrenia and bipolar illness. I will also mention there is a gene important in both hypercholesterolemia and demyelinating diseases in the same region. Has anyone considered susceptibility to viral infection, or misdirected immune response to same, as the mysterious genetic link?

    What I am seeing in common is a long list of illnesses where patients have been disenfranchised through fragmented diagnoses without etiology or cure. (And I have not yet gone about this systematically.) Substantial research money has been dribbled away in many directions, with the underlying implicit assumption these patients just like to complain. In the absence of known etiology, all treatments are experimental. Traditional treatments are based on enormous ignorance, and largely ineffective, not to say harmful. (Check for mention of possible iatrogenic origin for many conditions.)

    Why is it so hard to start clinical trials?

See more popular forum discussions.

Share This Page