Mr. Chairman, distinguished members of the Committee and guests, my name is Morgan Downey and I am Executive Director of the American Obesity Association. I am pleased to have this opportunity to discuss a critical issue for millions of Americans - how NIH establishes research funding priorities.

I would like to provide some background on my 20 years of work with the National Institutes of Health. In the late seventies, I began lobbying for NIH support for research on speech, language and hearing disorders. Such research was part of the then National Institute on Neurological, Communicative Disorders and Stroke (NINCDS). During my ten years of this work, I was involved closely with an advocacy organization, the National Coalition for Research on Neurological Disorders know as NCR. NCR lobbied for the budget of the NINCDS and later NINDS. NCR worked very closely with the late Silvio O. Conte, then the Ranking Republican on the Appropriations Committee with jurisdiction over NIH.  NCR was involved in organizing witnesses before the Appropriations Committee, often with a celebrity. NCR was also the lead lobbying organization behind the Congressional Resolution which declared the 1990s the Decade of the Brain. During this time, I was also closely involved in the legislation to establish the National Institute on Deafness and Other Communication Disorders (NIDCD).  Subsequent to the enactment of the Decade of the Brain, I served as Assistant Director of the National Foundation for Brain Research which was created to increase Congressional and public understanding of the advances being made in neuroscience. I also became Executive Director of the National Coalition for Research on Neurological Disorders and represented several organizations including professional societies and patient organizations seeking increased attention for their area of concern. I have testified before Congress on numerous occasions, organized lobbying efforts, worked with celebrity witnesses such as Ray Charles and Muhamad Ali, worked on legislation establishing a new Institute or funding a particular disorder. Last summer, I accepted this position with the American Obesity Association. In short for some 20 years I have been closely involved with NIH and the Congressional process relating to its organization and funding.

The charge to this committee is “to conduct a comprehensive study of the policies and processes used by NIH to determine funding allocations for biomedical research.” Specifically the Congress has asked the Institute of Medicine to assess:

1. the factors or criteria used by NIH to determine funding allocations for disease research,
2. the process by which research funding decisions are made,
3. the mechanisms for public input into the priority-setting process, and
4. the impact of statutory directives on research funding decisions.”

(PL. 105-78)

Implicit in this charge is an assumption that a process for establishing research funding priorities already exist. If there is one, I am not aware of it or its criteria or mechanism for public input. As I will shortly demonstrate, if there is such a process, it has failed.

Mr. Chairman, I am very proud of my association with NIH over these years. I take a back seat to no one in my admiration for the intelligence, commitment, compassion and scientific integrity of the individuals who are part of  NIH. I count myself fortunate to have known and count as friends several former and current directors of NIH Institutes. Yet I have to report, that by any reasonable measure, NIH has failed miserably to respond to this country’s greatest neglected public health crisis -- obesity.

Obesity should be viewed as a test case of NIH priority setting by this committee. Until late last year, there was no organized advocacy organization lobbying for greater obesity research funding. There are no Members of Congress or celebrities promoting research on obesity.

If a NIH planning process existed, it might rely  in part on morbidity and mortality data, scientific opportunity, the incidence and prevalence of the disease and the effects on health care costs. If this were case, obesity would be funded at far higher levels than its current levels.

First, let us examine the scale and costs of the growing epidemic of obesity in the United States. In 1985, the NIH recognized obesity as a disease. The NIH Consensus Development Conference stated, "Current knowledge of human obesity has progressed beyond the simple generalizations of the past. Formerly, obesity was considered fully explained by the single adverse behavior of inappropriate eating in the setting of attractive foods. The study of animal models of obesity, biochemical alterations in man and experimental animals, and the complex interactions of psychological and cultural factors that create susceptibility to human obesity indicate that this disease in man is complex and deeply rooted in biologic systems. Thus, it is almost certain that obesity has multiple causes and that there are different types of obesity." [1]

Poor diet and inactivity (virtual synonym for obesity) is the second leading cause of preventable death in the United States after smoking. [2]  According to the latest reports from the Center for Disease Control and Prevention about 58 million American adults are overweight to the point where they are incurring health risks. The percentage  of American adults with obesity has increased 30% in 10 years, from 25% in 1980 to 33% in 1991. Conservative estimates indicate that 14% of children and 12% of adolescents are overweight. 33% of men and 36% of women are overweight. Obesity disproportionately effects minorities; the prevalence is 48.5% of non-Hispanic black women and 47.2% of Mexican American women. [3]

Recently, former Surgeon General C. Everett Koop, M.D. supported the estimate that 300,000 premature U.S. deaths a year are attributable to overweight. [4] In other words, premature deaths due to overweight equal over 4 Oklahoma City bombings a day!

Obesity is a long term chronic disease. There are at least eight other diseases that worsen as obesity increases or decreases as weight is reduced. They include heart disease, hypertension, dyslipidemia, adult-onset diabetes, stroke, sleep apnea, osteoarthritis and deep vein thrombosis.

The costs of obesity are equally staggering totaling around $45.8 billion in 1990 or 6.8% of total health care expenditures. Utilization of health care resources is proportionate to excess body fat. [5]  Nearly 80% of patients with adult onset or non-insulin-dependent diabetes mellitus are obese. Much of the estimated $11.3 billion spent each year to diagnose, treat and manage NIDDM stems from obesity. Nearly $2.4 billion dollars or 30% of the total amount spent on gallbladder disease and gallbladder surgery are related to obesity. Nearly 70% of the diagnosed cases of cardiovascular disease are related to obesity. Obesity accounts for $22.2 billion or 19% of the total costs of heart disease. Obesity more than doubles one’s chances of developing high blood pressure which affects approximately 26% of obese American men and women. The annual cost of obesity-related high blood pressure is close to $1.5 billion dollars. Almost half of breast cancer cases are diagnosed among obese women; an estimated 42% of colon cancer cases are diagnosed among obese individuals. Obesity-related breast cancer and colon cancer account for 2.5% of the total costs of cancer of $1 billion dollars annually. [6]

Obesity is also increasing  worldwide as more Western type diets are introduced into other countries and as people become less active. It is no wonder then that in 1997 the World Health Organization declared obesity to be “the biggest, global chronic health problem in adults. If action is not taken to stem the pandemic, millions will develop related diseases such as diabetes and heart disease.” According to data compiled by the World Health Organization International Obesity Task Force, the economic costs of obesity are 3% to 8% of the total health care expenditures in the United States and Europe - proportions at least as great as those for all cancer and AIDS. [7]

At this point, it would be fair to assume that the National Institutes of  Health, the world's premier biomedical research organization, would devote resources to this disease relative to its prevalence, health consequences and costs. It would be fair to assume that NIH would focus on the basic genetic, environmental, physiological, metabolic and behavioral causes of the disease. It would be fair to assume that, within NIH, obesity research is recognized at a level of organization commensurate with its multifactorial aspects and importance to Americans. Fair yes; accurate no. In fact, obesity research at NIH is an orphan. Its funding levels are far below other diseases with fewer affected persons, less adverse health effects, and lower economic costs. Yet, the scientific opportunities for advancing our understanding of obesity are as great or greater as in any  other area of medicine.

The following analysis incorporates discrepancies between funding for obesity and other disorders. I wish to make it clear that there is no intention to disparage or critique the funding that other disease conditions enjoy. Rather my purpose is to demonstrate the inexplicable differences in research funding depending on disease.

Obesity is the second leading cause of preventable death after smoking.  Smoking and tobacco research supported by NIH was $802 million in FY 98 compared to $92 million for obesity - an 8 fold difference. Yet best estimates are that the difference in mortality between tobacco and poor diet and inactivity is only 1.3% (400,000 v. 300.000). [2]

I must point out that the figures I am using  are for FY98 and are from the NIH web site. I would have used the new FY99 estimates but shortly after AOA testified before the House Appropriations Committee using this information, obesity was dropped for the listing of disease specific funding. (Also dropped were cervical cancer, ovarian cancer, colo-rectal cancer, and uterine cancer. Added to the list were fibromyalgia and hepatitis C. No explanations were provided.)

Comparing populations and NIH  research funding, we see that even though obesity affects more individuals it receives far less funding than other widely prevalent diseases.

 

HIV/AIDS	600,000-700,000	$1.5 billion
Cancer	8 million	$2.7 billion
Diabetes	16 million	$373 million
Cardiovascular disease	22 million	$1   billion
Obesity	58 million	$ 92 million

Last year, Mr. Istook, a Member of Congress, undertook to examine differences in NIH funding levels on both a per patient and a per death basis. [8] He reported that NIH funds research at an estimated rate per death from:

The comparable figure for obesity would be $306.

Mr. Istook estimates funding levels per patient are:

Again, the comparable figure for each adult obesity patient is a $1.59. If children with obesity were included, the figure would be $1.09.

Diseases or conditions caused by obesity or ameliorated by weight loss receive far more generous funding than the underlying disease, obesity. For example the following amounts are spent for 3 of the 8 conditions caused or affected by obesity:

These three conditions alone receive over 6 times the amount of funding going into the disease which causes the condition. Is this "basic" research?

Obesity is responsible for about  6.8% of health care costs. A study conducted in the early 1990s by the National Foundation for Brain Research indicated that for all brain disorders, (including Alzheimer’s Disease, depression, drug addiction, alcoholism, Parkinson’s, epilepsy, head injury, stroke, mental retardation and spinal cord injury to name only a few), were responsible for about 7% of health care costs. According to the NIH information, funding on the Decade of the Brain (Brain  Disorder) plus Parkinson, Alzheimer, stroke and spinal cord injury total $3.3  billion in FY 98. In other words, there is less than a 1% difference in health care costs incurred by all brain disorders compared to obesity but a NIH funding difference of 3,643%.

Consideration should also be given that the organizational structure at NIH is a reflection of its priorities. In obesity, even though its co-morbid conditions include eight diverse diseases, it is located in the Diabetes Institute. However, it is not one of the five divisions in the Diabetes Institute;  it is one of 17 branches. To me, this organizational structure is akin to putting cancer research in the Dental Institute because the Dental Institute is responsible for pain research and pain is a symptom of cancer. It makes no sense.

By whatever standard - scientific opportunity, prevalence and incidence, public health implications, deaths, or cost - obesity has been shortchanged by NIH with tragic consequences. Effective understanding of obesity has been setback and new treatments come out without a solid understanding of potential physiological consequences such as heart valve damage or breast cancer. Perhaps the most damaging consequence of the neglect of obesity by NIH is the perpetuation of crippling stigma in this society against fat and very fat people. When I look at the leadership NIH has provided in fighting the stigma associated with cancer, mental illness, substance abuse and HIV/AIDS, I can only dream of the day the considerable moral and scientific authority of NIH is brought to bear on behalf of persons with obesity.

So what does this mean for the charge to this committee. The possible explanations for the low priority of obesity support are:

1. NIH has no priority setting process,
2. NIH has a priority setting process but the criteria do not include mortality, morbidity, scientific opportunity, public health needs or health care costs,
3. NIH has a priority setting process  which includes those criteria but has secret information that no one else has,
4. NIH, like the rest of society and as documented in the health care field, is expressing its stigma to persons with obesity and has made a moral decision that this disease is not entitled to more funding, or,
5. Obesity has lacked a strong Washington presence to date to advocate and lobby for more research, to testify, write letters, hire lobbyists, bring in celebrities and convince Congressional and Administration leaders to provide more funds for research.

If Congress is tired of trying to evaluate the claims of various organizations to greater support for research funding and if the NIH wants a process which contains less direction from Congress, such a process would have to meet certain minimum conditions such as:

• objective criteria,
• reliable funding data,
• universal application to all diseases and conditions no matter what degree of political support they enjoy.

Such a process does not now exist. We would welcome such a process but not to the extent of removing Congress from its rightful role to oversee the fair administration of taxpayer dollars devoted to biomedical research.

If there is any further information we can provide to facilitate the committee’s deliberations, we will be happy to do so.

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