Page 1 GAO-14-490R NIH Funding Update

441 G St. N.W.

Washington, DC 20548

April 23, 2014

The Honorable Jack Kingston

Chairman

Subcommittee on Labor, Health and Human Services,

Education, and Related Agencies

Committee on Appropriations

House of Representatives

National Institutes of Health: Fiscal Year 2013 Research Funding Allocations across 

Selected Diseases and Conditions

Dear Mr. Chairman:

The National Institutes of Health (NIH) is the nation’s leader in sponsoring and conducting 

biomedical research related to life processes and many diseases and conditions, including 

those that are among the leading causes of death both in the United States and globally.1 In 

fiscal year 2013, NIH, an agency of the Department of Health and Human Services (HHS), had 

a budget of over $29 billion, most of which was used to fund research that supports scientists 

and research personnel working at universities, medical schools, and other research institutions 

and research performed by NIH scientists in NIH laboratories. Given NIH’s role in biomedical 

research and the size of its budget, Congress and researchers have had long-standing interest 

in how NIH establishes research priorities and how those priorities guide the allocation of its 

resources, particularly in relation to various diseases and conditions. Accordingly, we issued a 

report in March 2014 that included information about NIH’s fiscal year 2012 research funding 

related to diseases and health conditions that are the leading causes of death or the most 

prevalent chronic conditions.2

In response to our March 2014 report, you asked us to provide similar information about NIH’s 

fiscal year 2013 research funding related to these same diseases and conditions when it 

became available. To accomplish this, we reviewed NIH’s Research, Condition, and Disease 

Categorization system (RCDC) funding data for fiscal year 20133 for those categories within 

RCDC that best matched with leading causes of death in the United States, chronic disease 

prevalence for adults in the United States, and leading causes of death globally.4

 1

According to the Centers for Disease Control and Prevention (CDC), leading causes of death in the United States in 

2011 include diseases of the heart, malignant neoplasms, chronic lower respiratory diseases, cerebrovascular 

disease, and accidents. The most prevalent chronic diseases and conditions include obesity, chronic joint symptoms, 

hypertension, untreated dental caries, and arthritis.

We 

interviewed and collected information from NIH officials responsible for RCDC to understand the 

data gathered and reported on, and determined that the data were sufficiently reliable for the 

2

See GAO, National Institutes of Health: Research Priority Setting, and Funding Allocations across Selected 

Diseases and Conditions, GAO-14-246 (Washington, D.C.: Mar. 31, 2014).

3

Fiscal year 2013 research funding data was made publicly available in March 2014.

4

During our previous work, we confirmed the matches between RCDC categories and leading diseases and 

conditions with NIH.
Page 2 GAO-14-490R NIH Funding Update

purposes of this review. More detail regarding our process for determining the leading causes of 

death and the most prevalent chronic conditions, and the corresponding categories from the 

RCDC system, is contained in Appendix II of our March 2014 report.5

We conducted this performance audit in March and April 2014 in accordance with generally 

accepted government auditing standards. Those standards require that we plan and perform the 

audit to obtain sufficient, appropriate evidence to provide a reasonable basis for our findings 

and conclusions based on our audit objectives. We believe that the evidence obtained provides 

a reasonable basis for our findings and conclusions based on our audit objectives.

Background

NIH conducts and sponsors biomedical research through its 27 Institutes and centers (ICs), 

each of which is charged with a specific mission. ICs’ missions generally focus on a specific 

disease, a particular organ, or a stage in life, such as childhood or old age. The ICs support, 

plan, and manage their own research programs, and the 24 ICs that fund extramural research 

each make final decisions on which projects to fund or conduct contingent on the available 

appropriation or funding.6 We found in our previous report that the five selected ICs we 

reviewed set research priorities considering several similar factors, such as the IC’s mission, 

available appropriations, scientific needs and opportunities, gaps in funded research, the burden 

of disease in a population, and public health need, such as an emerging public health threat that 

needs to be addressed, like influenza.7

In response to 2007 legislation directing NIH to establish an electronic system to categorize 

NIH’s research grants and activities, the agency created RCDC.8 The system uses a computerbased text-mining tool that recognizes words and phrases in project descriptions in order to 

assign NIH projects to any of the 237 applicable categories of diseases, conditions, and 

research areas that were developed for reporting to Congress and the public.9

 5

See 

As we previously 

reported, according to NIH officials RCDC serves as NIH’s primary computerized reporting 

GAO-14-246.

6

NIH funds extramural research projects through a range of mechanisms, such as grants and contracts that are 

awarded to scientists and research personnel working at institutions outside of NIH. For the purposes of this report, 

we refer to relevant NIH-funded research as “projects” and do not distinguish between the different types of awards.

7

The five ICs are National Cancer Institute; National Heart, Lung, and Blood Institute; National Institute of Allergy and 

Infectious Diseases; National Institute of Diabetes and Digestive and Kidney Diseases; and National Institute of 

General Medical Sciences.

8

National Institutes of Health Reform Act of 2006, Pub. L. No. 109-482, § 104, 120 Stat. 3675, 3689 (2007) (adding 

§ 403B to the Public Health Service Act, codified at 42 U.S.C. § 282b). The House committee of reference indicated 

that this language was intended to address a recommendation made in an Institute of Medicine report to standardize 

data and information management systems by creating a comprehensive electronic reporting system that would 

catalogue all of the research activities of the NIH in a standardized format. H. Rep. No. 109-687, at 4 – 5 (2006), 

referring to Institute of Medicine, Responding to Health Needs and Scientific Opportunity: The Organizational 

Structure of the National Institutes of Medicine (Washington, D.C.; Oct. 16, 1984).

9

The text mining tool is used in conjunction with NIH definitions—a list of terms and concepts selected by NIH experts 

to define a research category—to match research projects to categories. Projects may fall into one or more 

categories. There are additional categories that are not reported publicly for issues such as nanotechnology, for a 

total of approximately 290 categories.
Page 3 GAO-14-490R NIH Funding Update

process to categorize its research funding.10

As we previously reported, NIH officials also said that the RCDC was not designed to be able to 

estimate a total, non-duplicated amount of funding specific to a given disease or condition 

because RCDC categories are neither mutually exclusive nor exhaustive. Specifically, projects 

may be reported in multiple RCDC categories—on average, a single project may fall into five or 

six categories; some categories are inherently related, and therefore an entire RCDC category 

can also be contained within another category; categories do not exist for all diseases; and, 

according to NIH officials, 3 to 5 percent of NIH-funded research projects do not appear in any 

RCDC category.

The system includes reporting tools that can be 

used to generate publicly-available, web-based reports on total funding amounts for the 

research projects related to each RCDC category.

Results

In fiscal year 2013, NIH reported funding levels that continued to range widely—from $11 million 

for projects in one RCDC category to about $5.3 billion for another—for the different RCDC 

categories we examined that corresponded to three different measures of burden of disease: 

the most frequent causes of death in the United States,11 the most frequent causes of death 

globally,12 and the most prevalent chronic conditions for adults in the United States.13 Tables 1 

through 3 below break out RCDC category funding by these three measures. This is consistent 

with our March 2014 report, in which we reported fiscal year 2012 funding levels that ranged 

widely across the 40 RCDC categories we examined, from $13 million for projects in one RCDC 

category to more than $5.6 billion for another.14

Fiscal year 2013 funding levels related to leading causes of death in the United States ranged 

from $24 million in one RCDC category to about $5.3 billion in another for the corresponding 

RCDC categories. (See table 1.)

 

10RCDC tracks projects funded by three different types of NIH funding: extramural research grants, research and 

development contracts, and intramural research conducted in NIH’s own laboratories and clinics. Information on 

funding totals and projects within each category is available on the NIH website. See “Estimates of Funding for 

Various Research, Condition, and Disease Categories (RCDC),” accessed March 7, 2014

http://www.report.nih.gov/categorical_spending.aspx. 

11D. L. Hoyert and J. Xu, National Center for Health Statistics, “Deaths: Preliminary Data for 2011,” National Vital 

Statistics Reports, vol. 61, no. 6 (Oct. 10, 2012).

12R. Lozano et al., “Global and Regional Mortality from 235 Causes of Death for 20 Age Groups in 1990 and 2010: A 

Systematic Analysis for the Global Burden of Disease Study 2010,” The Lancet, vol. 380 (2012).

13CDC provided data for the most prevalent chronic conditions based on a variety of sources.

14See GAO-14-246. 
Page 4 GAO-14-490R NIH Funding Update

Table 1: Leading Causes of Death in the United States, 2011, and NIH Research, Condition, and Disease 

Categorization (RCDC) Categories and Fiscal Year 2013 Funding

Rank

Cause of death

(Subcategories)

Number of 

deaths a Corresponding NIH RCDC category

Fiscal year 2013 

funding for

RCDC category 

($ millions)

1

b

Diseases of heart 596,339 Cardiovascular 1,964

Ischemic heart diseases 374,601 Heart disease – coronary heart 

disease

404 c

Hypertensive heart disease 33,383 Hypertension 222 c

2 Malignant neoplasms 575,313 Cancer 5,274

Malignant neoplasms of trachea, 

bronchus and lung

156,614 Lung cancer 208

Malignant neoplasms of lymphoid, 

hematopoietic and related tissue

56,263 Lymphoma 233

Childhood leukemia 67

Malignant neoplasms of colon, 

rectum and anus

52,243 Colo-rectal cancer 281

Malignant neoplasm of breast 41,271 Breast cancer 657

Malignant neoplasm of pancreas 37,371 Pancreatic cancer 125

Malignant neoplasm of prostate 27,929 Prostate cancer 286

Malignant neoplasms of liver and 

intrahepatic bile ducts

21,519 Liver cancer 71

3 Chronic lower respiratory diseases 143,382 Asthma 207

Emphysema 24

Chronic obstructive pulmonary 

disease

102

4 Cerebrovascular diseases 128,931 Stroke 282

5 Accidents (unintentional injuries) 122,777 Injury (total) accidents/ adverse 

effects

367

Non-transport accidents 85,502 No RCDC match —

Transport accidents 37,275 No RCDC match —

6 Alzheimer’s disease 84,691 Alzheimer’s disease 504

7 Diabetes mellitus 73,282 Diabetes 1,007

8 Pneumonia and influenza 53,667 Pneumonia and influenza 407

Pneumonia 52,136 Pneumonia 113

9 Nephritis, nephrotic syndrome and 

nephrosis

45,731 Kidney disease 551

Renal failure 43,682 Kidney disease 551

10 Intentional self-harm (suicide) 38,285 Suicide 37

Intentional self-harm (suicide) by 

discharge of firearms

19,766 No RCDC match —

Intentional self-harm (suicide) by 

other and unspecified means and 

their sequelae

18,519 No RCDC match —

11 Septicemia 35,539 Septicemia 88

12 Chronic liver disease and cirrhosis 33,539 Chronic liver disease and 

cirrhosis

282
Page 5 GAO-14-490R NIH Funding Update

Rank

Cause of death

(Subcategories)

Number of 

deaths a Corresponding NIH RCDC 

category

Fiscal year 2013 

funding for

RCDC category 

($ millions)

13

b

Essential hypertension and 

hypertensive renal disease

27,477 Hypertension 222

14 Parkinson’s disease 23,107 Parkinson’s disease 135

15 Pneumonitis due to solids and 

liquids

18,090 No RCDC match —

Source: GAO analysis of data from the Centers for Disease Control and Prevention (CDC) and NIH.

Notes: See D.L. Hoyert and J. Xu, National Center for Health Statistics, “Deaths: Preliminary Data for 2011,” National Vital Statistics 

Reports, vol. 61, no. 6. (Oct. 10, 2012).

a

We identified the 15 leading causes of death in 2011 reported by CDC in its National Vital Statistics Reports. Then, we identified 

subcategories of those leading causes of death. To do so, we used as the cut off the number of deaths for the 15th leading cause of 

death—which was 18.090 deaths from pneumonitis due to solids and liquids. We included those subcategories of causes of death, 

for example pneumonia, where the number of deaths reported was greater than 18,090.

b

RCDC categories are not mutually exclusive. Because of this, NIH officials stated, RCDC is not designed to be used to determine 

the proportion of NIH funding specific to a given disease or condition.

c

Fiscal year 2013 funding levels related to leading causes of death globally ranged from 

$24 million in one RCDC category to about $2.9 billion in another for the corresponding RCDC 

categories. (See table 2.)

NIH noted that while this RCDC category was the closest match, it is substantially broader than the disease or condition it was 

selected to represent.
Page 6 GAO-14-490R NIH Funding Update

Table 2: Leading Causes of Deaths, Globally, 2010, and NIH Research, Condition, and Disease Categorization 

(RCDC) Categories and Fiscal Year 2013 Funding

Rank Cause of death Corresponding NIH RCDC category

Fiscal year 2013 

funding for 

RCDC category 

($ millions)

1

a

Ischemic heart disease Heart disease – coronary heart disease 404 b

2 Stroke Stroke 282

3 Chronic obstructive pulmonary 

disease

Chronic obstructive pulmonary disease 102

Emphysema 24

4 Lower respiratory infections Pneumonia 113

Influenza 304 c

5 Lung cancer Lung cancer 208

6 HIV/AIDS HIV/AIDS 2,898

7 Diarrheal diseases No RCDC match —

8 Road injury No RCDC match —

9 Diabetes Diabetes 1,007

10 Tuberculosis Tuberculosis 240

11 Malaria Malaria 147

12 Cirrhosis Chronic liver disease and cirrhosis 282

13 Self-harm Suicide 37 c

14 Hypertensive heart disease Hypertension 222 b

15 Preterm birth complications Infant mortality/(Low birth weight) 253

Perinatal period – conditions originating in 

perinatal period

486

Source: GAO analysis of Global Burden of Disease Study 2010 data and NIH data.

Notes: R. Lozano et al., “Global and Regional Mortality from 235 Causes of Death for 20 Age Groups in 1990 and 2010: A 

Systematic Analysis for the Global Burden of Disease Study 2010”, The Lancet, vol. 380 (2012).

a

RCDC categories are not mutually exclusive. Because of this, NIH officials stated, RCDC is not designed to be used to determine 

the proportion of NIH funding specific to a given disease or condition.

b

NIH noted that while this RCDC category was the closest match, it is substantially broader than the disease or condition it was 

selected to represent.

c

Fiscal year 2013 funding levels related to the most prevalent chronic diseases for adults in the 

United States ranged from $11 million in one RCDC category to about $5.3 billion in another for 

the corresponding RCDC categories. (See table 3.)

NIH noted that while this RCDC category was the closest match, it is substantially narrower than the disease or condition it was 

selected to represent.
Page 7 GAO-14-490R NIH Funding Update

Table 3: Chronic Disease Prevalence for Adults, United States, and NIH Research, Condition, and Disease 

Categorization (RCDC) Categories and Fiscal Year 2013 Funding

Rank

Chronic diseases 

and conditions

(Subcategories)

Number of 

adults impacted 

(in 1,000s) a Corresponding NIH RCDC category

Fiscal year 2013 

funding for 

RCDC category 

($ millions)

1 

b

Obesity Not reportedc Obesity 812

2 Chronic joint symptoms 68,749 No RCDC match — 

3 Hypertension 58,959 Hypertension 222

4 Untreated dental caries Not reportedc Dental/oral and craniofacial disease 480 d

5 Arthritis diagnosis 53,782 Arthritis 231

Lupus 92

Fibromyalgia 11

6 Asthma - ever had 29,041 Asthma 207

7 Heart disease (Total) 26,485 Heart disease 1,230

Heart disease (coronary) 15,300 Heart disease – coronary heart disease 404

8 Diabetes 20,589 Diabetes 1,007

9 Any Cancer 19,025 Cancer 5,274

Breast cancer 3,221 Breast cancer 657

Prostate cancer 2,280 Prostate cancer 286

Cervical cancer 1,188 Cervical cancer 98

10 Asthma - still has 18,869 Asthma 207

11 Stroke 

(cerebrovascular diseases)

6,171 Stroke 282

12 Emphysema 4,680 Emphysema 24

13 Epilepsy 2,300 Epilepsy 129

Source: Centers for Disease Control and Prevention (CDC) and GAO analysis of NIH data.

Notes: CDC provided data for the most prevalent chronic conditions based on a variety of sources.

a

CDC provided us with a list of the 13 most prevalent chronic diseases and conditions, and four subcategories.

b

RCDC categories are not mutually exclusive. Because of this, NIH officials stated, RCDC is not designed to be used to determine 

the proportion of NIH funding specific to a given disease or condition.

c

www.cdc.gov/DataStatistics

Only the prevalence rank was provided for this chronic condition. CDC provides links to data and statistics on multiple health topics, 

including obesity and oral health at . 

d

Agency Comments

NIH noted that while this RCDC category was the closest match, it is substantially broader than the disease or condition it was 

selected to represent.

We provided a draft of this report to HHS. The Department provided technical comments, which 

we incorporated as appropriate.
Page 8 GAO-14-490R NIH Funding Update

– – – – – 

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Congressional Relations and Public Affairs may be found on the last page of this report. 

Major contributors to this report were Karen Doran, Assistant Director; George Bogart; 

Carolyn Feis Korman; Cathy Hamann; Natalie Herzog; and Amy Leone.

Sincerely yours,

Linda T. Kohn

Director, Health Care

(291208)
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