The Bottom Forty at the NIH
The first part of this blog series was focused on chronic fatigue syndrome and fibromyalgia. Now, in an effort to understand why these disorders get such poor funding, the focus broadens to the bottom forty of the two hundred plus conditions and disease categories the NIH provides funding levels for.
The NIH spends about $440 million/year on the bottom forty diseases. Compare that to the NIH’s total budget ($30 billion) and you can get a rough estimate of how little the money it spends on them.
Where do ME/CFS and FM rank in all this? Chronic fatigue syndrome is the 10th and fibromyalgia is the 18th worst funded disease category/condition at the NIH. If you take away three non-disease categories (hyperbaric oxygen, climate change, global warming) the NIH funds, ME/CFS becomes the fifth worst disease funded by the NIH. That’s a pretty low rank for a disease studies suggest affects a million people and causes tens of billions of dollars in economic losses.
The bottom forty can divided into three categories: rare disorders, common disorders and “others” – a category that includes few disorders.
The Rare Disorders (16)
|Name||Prevalence/Incidence||# Effected in the US||Economic Burden/Year||NIH 2016 est. Funding (millions)|
|Batten Disease||2-4/ 100,000 births||5|
|Duchenne/ Becker Muscular Dystrophy||40,000||33|
|Downs Syndrome||1/691 babies||400,000||?||19|
|Facioscapulohumeral Muscular Dystrophy||4-12/100,000||2,400||7|
|Mucopolysaccharidoses (MPS)||1 in 25,000 babies||?||7|
|Osteogenesis Imperfecta||1/20,000 births||20-50,00||?||12|
|Spina bifida||3.5 per 10,000 births||1,500/year||?||10|
|Tourette Syndrome||1/360 children||?||4|
Disorders with under a million people were considered “rare” disorders. (Only cerebral palsy, however, came close to affecting a million people. Most of the disorders in this afflict less than 50,000 people in the U.S.)
These disorders consist mostly of genetic disorders, neurological disorders and pathogen triggered disorders. Many are serious, crippling diseases. While the individual impact of having or caring for someone with one of these disorders is horrendous they are too rare to elicit economic impact studies.
The NIH spends an average of $12.4 million/year on these disorders.
The Common Disorders (16)
|Disorder||Prevalence/Incidence||# Effected in the U.S||Economic Costs/Year – US||NIH 2016 est. Funding (millions)|
|Allergic Rhinitis (Hay Fever)||–||10-30% of population||30-90 million||5 billion (2002)||6|
|Chronic Fatigue Syndrome||@75%||1-4 million||@20 billion||6|
|Digestive Diseases – (Peptic Ulcer)||–||4% of population at any time||12 million||$6 billion (1998)||15|
|Endometriosis||100% Female||10% of women of reproductive age||10 million||22 billion (2002)||7|
|Fibromyalgia||75% female||2-5% of women||10 million||18 billion||11|
|Fibroid Tumors||100% female||9|
|Interstitial Cystitis||5-9:1||60-200/100,00||1-2 million||428 million (1987)||10|
|Irritable Bowel Syndrome||66% female||10-15% of population||21 billon / 1.6-2 billion||Not tracked|
|Migraine||75% female||36 millionChronic migraine – 2.4-7.1 million||31 billion||21|
|Pelvic Inflammatory Disease||100% female||5% of women of reproductive age||1 million yearly||1.9 billion (1998)||2|
|Psoriasis||–||7.5 million||35 billion||13|
|Temporomandibular Muscle/Joint Disorder (TMJD)||80% female||10 million||?||18|
|Vulvodynia||100% female||8% of women||30 billion +||3|
Common disorders are as common in rare disorders into the NIH’s bottom forty. Two types of common disorders can be found: one which mostly affects women a smaller category that is non gender based. First the non-gender based category.
The Non Gender Based Common Disorders (n=5)
Several different scenario’s could explain the low spending on these disorders.
Common but manageable – The spending on allergic rhinitus and peptic ulcer may reflect disorders that are common but not particularly debilitating. While the estimated economic losses for allergic rhinitis and peptic ulcer are high ($5 /6 billion dollars a year) they are low relative to the huge number of people they affect (30-90 million/ 12 million Americans). (Peptic ulcer is, however, responsible for hundreds of thousands of death worldwide.)
Moral indignation – Emphysema is another matter. I was unable to get an economic loss figure for emphysema – the most severe form of chronic obstructive pulmonary disorder (COPD) – but, since it often results in death and it is believed to affect almost 5 million Americans – the economic costs are clearly very high. Emphysema is probably near the bottom of the NIH’s spending list because most cases of emphysema are directly linked to smoking – an avoidable habit.
The Gender Based Disorders
For want of a better term the second was called gender based disorders. Ten of the fourteen common disorders in the bottom forty at the NIH fit this profile. (They are in blue in the table.)
These disorders generally do not kill but may have serious consequences. Endometriosis (7 ml/yr NIH funding), for instance, is the number one cause of infertility in the U.S. and is responsible for 400,000 hysterectomies a year. Pelvic Inflammatory disease (2 ml/yr) leads to 125,000-150,000 hospitalizations and causes 75,000 cases of infertility yearly. Studies indicate that people with interstitial cystitis (10 ml/yr) experience a quality of life similar to people with rheumatoid arthritis, chronic cancer pain or kidney dialysis patients. People with ME/CFS (6 mil/yr) have significantly worse functioning than people with congestive heart failure, type II diabetes mellitus, acute myocardial infarction, multiple sclerosis and depression.
Migraine (21 mly/yr) causes three times as many years lived with disability (disability adjusted life years) as epilepsy yet gets a fifth of the funding that epilepsy does. Irritable bowel syndrome (IBS) does not make the list (because the NIH doesn’t track it’s expenditures) but is believed to result in 2.4 and 3.5 million annual physician visits for IBS in the United States alone. Misdiagnosis of IBS is believed to be responsible for considerable numbers of unneeded hysterectomy and ovarian surgery. Half of the gender based disorder, interestingly enough, affect the female reproductive system.
By all accounts these are serious disorders that cause much illness and distress. They all, however, share the following characteristics
- They are primarily found in women
- They generally produce poorly defined, difficult to assess and invisible symptoms such as pain and fatigue
- They do not usually cause death
- Many have negative psychological connotations
It is the inability of the NIH to adequately understand with this group of characteristics I believe that is responsible for their poor funding. The best way to explain this is to look at perhaps the most alarming example of a funding system gone wrong: migraine.
Migraine was a revelation to me. I associate migraine with disability and horrendous symptoms I assumed it would be getting a hundred million dollars in funding. Migraine is also revelatory in that it has managed to fix many of the problems facing ME/CFS – yet is still in the bottom forty.
Migraine’s problems with diagnostics were cleaned up 25 years ago. Pathophysiological findings and FDA approved drugs in the past 15 years have obliterated the idea that migraine is a psychosomatic disorder. Migraine should, one the face of it, being doing well.
It is, fact doing better. Migraine’s reward for fixing its problems is that it is in the upper tier of the bottom forty disorders. Over the past five years, it has seen a thirty percent increase in funding. The difference between the $21 million/year migraine receives from the NIH and the $5 million ME/CFS receives is a vast one.
Yet migraine is still clearly significantly underfunded. It causes considerably more disability than epilepsy and hepatitis C but receives five times less funding. It’s believed to cost the U.S. 21 billion dollars a year in economic losses. By all rights migraine should be receiving at least $100 million/year in funding but it isn’t even close.
Why? One reason is migraine has never gotten beyond its long history of delegitimization. The idea that a “nervous temperament” is behind migraine and it’s many triggers (foods, odors, colors, sounds, stress) has pervaded thinking about it for over 200 years. Many neurologists prefer not to see migraine patients because they are considered “difficult”. Despite the pathophysiological findings and the drugs (which don’t work for everybody) many providers still believe psychological factors play a significant role in the disease. They don’t consider them people with a major brain disorder; they consider them whiny, hypersensitive women.
Ironically, they are hypersensitive. Migraine, like FM and ME/CFS is a hypersensitivity disorder. The question is where do you assign the cause for the hypersensitivity – in the brain or the mind? Far too many neurologists still assign it to the mind.
Migraine patients routinely face comments that betray a grave misunderstanding of how severe their disease is. Like ME/CFS and FM patients they are encouraged to “just get through it”, to stop stressing about their condition, to relax more, to distract themselves. The severity of the disease has not gotten through.
Having a migraine, it turns out, is something like giving birth; until you’ve had one you don’t have a clue what it’s like. John McCain’s wife, Cindy described her decades long struggle with migraines by referring this way to her husband’s torture in Vietnam: “Being tied to a chair for four days. I can’t imagine how unbearable that pain must have been, but yeah, I can, because a migraine may really come close”
The Invisible Symptom Problem
The symptoms migraine and the most of the diseases in this category are associated with are clearly part of the problem. ME/CFS is associated with fatigue. Migraine is associated with headaches. Fibromyalgia is associated with pain. All these appear to manageable to anyone who hasn’t experienced them in their full glory.
Contrast these symptoms with those associated with well-funded diseases. Multiple sclerosis is associated with crippling nervous system problems; epilepsy with seizures; heart attacks with death; diabetes with blindness, amputated toes and worse.
It will probably be impossible to make the symptomatic aspects of these “invisible diseases” ever visible enough to achieve adequate funding. Most people without these disorders experience fatigue and pain as relatively transient, minor problems and they relate to them in that way. They simply can’t conceive how bad this symptoms can get: you’ve got to have one of these disorders to understand what it’s like.
That’s unfortunate because it appears that many funding decisions are still often very much symptom based. Even very rare disorders that cause death or visibly crippling symptoms get equal or more funding than diseases that cause widespread distress and produce major economic losses but have largely invisible and mostly discounted symptoms.
Despite the lack of significant mortality, irritable bowel syndrome is associated with high direct and productivity costs. Medscape
The real reason ME/CFS and FM and other disorders like it get poor funding is that broad historical forces have relegated them to the bottom strata of the NIH funding pile. The NIH simply doesn’t “get it” about any of these diseases. Give the NIH a visibly crippling disease that causes mortality and it will be all over it. Given it an “invisible” disorder that causes significant disability and causes major economic losses but does not kill and it will mostly ignore it.
Changing that gestalt is a key task for advocates. Honest conversations with decision-makers would reveal what they say to others or to themselves to justify keeping these disorders stuck at the bottom of the funding pile. Behind all those conversations though, must lie one basic belief – that they are simply not considered serious diseases.
If the NIH believes that ME/CFS, FM, interstitial cystitis, migraine and others should get less funding than other diseases it should be tasked with saying why. If the NIH considers serious illnesses to be those that cause death – that should be clarified and addressed. How the NIH makes the funding decisions it does needs to be made explicit. What means it has to adapt its funding algorhythm to new and emerging diseases (such as ME/CFS and FM) is a good question to ask.
Fortunately, the conversation about what disorders the NIH should be focusing on is occurring. The recognition that NIH funding at times bears little resemblance to disease burden is growing. A recent book indicated this is a worldwide problem. Op eds are showing up in major newspapers. The NIH is being forced to respond.
That a group of primarily women’s disorders are getting short shrift (again) has not yet become a talking point in the media. Why that hasn’t happened is something of a mystery to me but getting that question into the mainstream media would make a big difference.
The best way to shift the conversation (and the funding algorhythm at the NIH) may simply be to continue focusing on the economic impacts these disorders have – and making visible the funding gap that is present.
Is the NIH fulfilling its mandate to serve all Americans or is it picking winners and losers in the illness funding game? That’s a question the NIH should be confronted with regularly.
|Name||NIH 2016 Est. Funding|
|Agent Orange & Dioxin||8|
|Digestive Diseases – (Gallbladder)||10|
|Global Warming Climate Change||4|
|Stem Cell Research – Umbilical Cord Blood/ Placenta – Non-Human||7|