About Us

Strategic Plan for Reducing Health Disparities

Reviewed November 22, 2006

Introduction

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) supports basic, clinical, and epidemiologic research, research training, and information programs on diseases of joints, muscles, bones and skin. Most of these diseases are chronic and many cause life-long pain, disability, or disfigurement; they afflict millions of Americans; cause tremendous human suffering; and cost the United States economy billions of dollars in health care and lost productivity. These diseases affect people of all ages, racial and ethnic populations, and economic groups -- almost every household in America is affected in some way by one or more of these diseases. Many of these diseases affect women and minorities disproportionately – both in increased numbers and increased severity of the diseases.

Scope of this Plan

Although the term "health disparity1" covers a broad range of diseases and includes virtually all population groups, the focus of this plan is on one goal: to reduce health disparities among racial and ethnic minorities. There are many diseases within our mission areas that disproportionately affect women and are of great concern and interest to our Institute, but are beyond the scope of this plan. The diseases that are included in this plan are those where the health disparity is clearly identified and research is under way or planned to address the disparity.

The NIAMS has also developed a Long-Range Plan for FY 2006 - FY 2009 that provides a broad scope of research ongoing and planned across all of the Institute, and includes many of the diseases discussed in this plan. Pursuing the needs, opportunities, and recommended directions for research identified in the strategic plan for the NIAMS will certainly be of benefit to addressing the areas identified in this strategic plan for reducing health disparities.

Area of Research Focus: Lupus (Systemic Lupus Erythematosus or SLE)

Introduction/Background

  • Lupus is a serious and potentially fatal autoimmune disease, often occurring in women of child-bearing age. It can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain.

  • People of all races can have lupus; however, African American women have a three times higher incidence (number of new cases) and mortality than white women. They tend to develop the disease at a younger age than white women and to develop more serious complications. Nine times more women than men have lupus, and it is also more common in women of Hispanic, Asian, and Native American descent.

  • The NIAMS has undertaken a multi-pronged approach to this disease -- supporting research across the full spectrum from basic research to animal studies to clinical studies and clinical trials to prevention through identification of modifiable risk factors. It is only through these studies on multiple fronts that we can fully understand, diagnose, treat, and prevent lupus.

  • Considerable research has been focused on addressing the relationship of socioeconomic, demographic, cultural, immunogenetic, and clinical variables to the course of disease and outcome in Hispanic, African American, and Caucasian lupus patients. A study supported by the NIAMS since 1993, Lupus in Minority Populations: Nature vs. Nurture (LUMINA), demonstrated that Hispanic and African American lupus patients have more severe disease at the time of presentation than Caucasian patients. The study also found that genetic factors appear to be more important than socioeconomic determinants in influencing disease activity at onset of disease.

  • With regard to modifiable risk factors for disease outcomes in patients with lupus, we know that patients with chronic diseases have poorer outcomes when they have low socioeconomic status such as educational attainment, low income, and poor access to medical care. Several studies have found an association between lower socioeconomic status and higher morbidity or mortality in African American patients with lupus. In a large multicenter study, lupus disease activity and health status were most strongly associated with potentially modifiable psychosocial factors such as self-efficacy for disease management (that is, confidence in participating in the management of their own disease). Cumulative organ damage was most highly associated with clinical factors such as age and duration of disease. None of these outcomes was associated with race. These results suggest an important role for psychosocial interventions, to improve confidence in self-management, and coordinated with medical care. These are currently being evaluated in controlled clinical trials.

  • In exciting new research findings from mouse models of lupus, NIAMS-supported researchers identified seven to ten regions in DNA that are linked to this disease. This is the first evidence linking a particular chromosome region to lupus. The results to date suggest that lupus susceptibility genes are very similar in mice and humans, and that these same genes may be important in all racial groups. Additional genetic studies are now underway to confirm this linkage. New avenues of research have been opened up in genetic medicine, particularly exploration of the potential role of these genes in the progression of lupus to its more serious forms.

  • Genetic studies have provided important clues about lupus, and the NIAMS has a long and productive history of supporting such studies in patients and their family members. Previously reported studies have identified genetic factors that predispose African American lupus patients to more severe kidney disease.

  • In other genetic studies of lupus, researchers have found an association between the disease and a region on chromosome 1 in humans. Studies of the genetics of lupus may allow identification of at-risk individuals prior to development of disease, potential therapeutic strategies targeting the involved genes or gene products, and the possibility of developing markers of disease activity and/or response to treatment.

  • In other approaches to lupus, the NIAMS, the NIH Office of Research on Women's Health and the NIH Office of Research on Minority Health are co-funding the first clinical trial on the safety of estrogens for women with lupus. At the present time, women with lupus are usually advised not to take any medications that contain estrogen in the belief that it will worsen their disease or cause problems with blood clotting. This leaves women limited options for contraception during child-bearing years and for hormone replacement therapy during postmenopausal years. These studies focus on the effects of oral contraceptives on disease activity in women with lupus and on the effects of hormone replacement therapy with estrogen and cyclic low-dose progestins in postmenopausal women with lupus. Many of the patients recruited for this trial are minority women. The outcomes of this trial are expected to have a major impact on the treatment options, health, and quality of life for patients with lupus.

Goals

(1) Define the biologic mechanisms underlying increased susceptibility to and severity of lupus among ethnic groups.

Lupus is a prime example of a rheumatic disease of great variability whose prevalence, morbidity, and mortality are higher in minority groups. Socioeconomic, demographic, cultural, immunogenetic, and clinical variables may all play a role in the presentation and organ-specific progression of disease. Hispanic and African American lupus patients have more severe disease at the time of presentation than Caucasian patients. In general, early disease is more severe among minority female patients than among Caucasians. Genetic factors appear to be more important for lupus than socioeconomic determinants in influencing disease activity at the time of disease onset, but psychosocial factors such as self-efficacy may modify disease activity in people with established disease. The identification of biological factors involved in disease predisposition and onset will allow the design of appropriately targeted interventions.

Action Plan

  1. Continue support for the Lupus Registry and Repository to support genetic and mechanistic studies. This national resource collects blood from patients with lupus and their families. About one-third of the families studied are African American. A new objective is to increase the number of Mexican American and Puerto Rican families affected by lupus who are included in the Lupus Registry and Repository.
  2. Continue support of the investigation of lupus genes in African Americans, genes associated with lupus nephritis (kidney disease) in African Americans affected by lupus, and genes linked to immune dysregulation in Mexican American families affected by lupus.
  3. Sponsor a meeting on Genetics and Genomics of Rheumatic Diseases in November 2000, with the American College of Rheumatology, in Philadelphia, PA. A component of this meeting is to review the state of the art and research opportunities in the study of genetic factors in special populations affected by lupus and other rheumatic diseases.
  4. Launch an initiative in FY 2001 to identify the Biomarkers of Rheumatic and Skin Diseases. The purpose is to determine the existence and utility of biomarkers or surrogate markers for the identification of populations at increased risk for the development of diseases of interest to NIAMS and/or for the monitoring of progression and/or effectiveness of intervention in these diseases. Lupus is included among the disease areas of high priority in this initiative.

(2) Foster research to identify strategies to reduce health disparities in lupus patient populations.

Basic and patient-oriented research is needed to develop new knowledge to design strategies for prevention of disease onset, and prevention of organ damage and disability.

Action Plan

  1. Support studies to identify populations at risk for disease onset and organ-specific clinical manifestations, e. g., patient subgroups at risk for neuropsychiatric lupus.
  2. Support the development of new technologies, such as chip technology to identify populations at risk, diagnose disease, assess tissue damage and monitor responses to therapy. Chip technology allows for high-density, comprehensive gene expression analysis, and for measuring the expression of thousands of genes at a time, producing a very detailed picture of how one cell differs from other cells. This provides important information on how the same cell type differs from one population group to another, yielding clues to the basis of health disparities.
  3. Promote research and development of tools and technologies to monitor emerging tissue injury (e. g., worsening of kidney disease, accelerated atherosclerosis, or central nervous system inflammation in lupus).
  4. Promote research on immunization strategies using new vaccine approaches including gene therapy.
  5. Promote the development of culturally appropriate activities to enhance information dissemination and development of self-management programs to reduce morbidity and disability.

(3) Improve the understanding of the natural history, clinical aspects, responses to treatment and outcomes in patient populations disproportionately affected by lupus.

(4) Promote research on the relationships between socioeconomic status factors and disease outcomes in disproportionately affected patient populations. Factors could include self-efficacy, literacy, patient preferences, access, and others.

5) Explore new strategies that improve participation of disproportionately affected groups in patient-oriented research.

Collecting data on rare diseases in minority populations represents an important challenge for the NIAMS and the research community. Current research reveals limited and often conflicting data on the prevalence, incidence, outcomes, and sociocultural aspects of lupus among ethnic minorities. Development of programs to address the health needs of these populations is a high priority.

Action Plan

  1. Continue the support and coordination of data collection and analysis activities through currently funded projects.
  2. Encourage the study of how to (1) improve outcomes in lupus, (2) narrow the observed health disparities, and (3) determine the reasons for varied participation rates by minority groups in clinical studies under the newly designed Multidisciplinary Clinical Research Centers.
  3. Continue to lead the activities of the National Arthritis Data Group to advise the Institute, the CDC and other agencies on epidemiology and health outcomes research in the area of arthritis, and to design and analyze national data sets for arthritis and other rheumatic disorders, including lupus.
  4. Convene a workshop on health disparities in December 2000 to discuss the biologic and sociocultural bases of health disparities of diseases such as lupus and identify research opportunities. In addition, in collaboration with the CDC and officers from state Public Health Offices, we plan to have a discussion about the research needs and existing gaps and obstacles that limit information dissemination among ethnic and other minorities disproportionally affected by diseases such as lupus.

Area of Research Focus: Scleroderma

Introduction/Background

  • Scleroderma is an autoimmune disease that occurs much more frequently in women than in men. The hallmark of scleroderma is widespread hardening of the skin. In addition, many forms of scleroderma involve tissues in the lungs, heart, kidneys, intestinal tract, muscles, and joints. In severe cases, scleroderma can be fatal. Although the cause is unknown, researchers believe that both environmental and genetic factors may play a role in scleroderma.

  • While scleroderma affects members of all ethnic groups, it is particularly prevalent in certain Native American people. An important research study funded by the NIAMS blended modern-day genetic marker research and century-old tribal records, using census and historical records dating back to the 1800s. Researchers identified a chromosomal site associated with scleroderma in Oklahoma Choctaw Native Americans. This study suggests that the gene for the protein fibrillin-1 is a possible susceptibility gene for scleroderma. Fibrillin-1 is also known to be responsible for a scleroderma-like condition in a mouse model of the human disease. This work represents the results of an effective public/private partnership, since the NIAMS was joined by other institutes and offices of the NIH, as well as the Scleroderma Foundation/United Scleroderma Foundation, the RGK Foundation and the University of Texas-Houston in supporting this research.

Goals

(1) Define the biologic mechanisms underlying increased susceptibility to and severity of scleroderma among ethnic groups.

Scleroderma is an example of a rheumatic disease of great variability whose prevalence, morbidity, and mortality are higher in some minority groups. Socioeconomic, demographic, cultural, immunogenetic, and clinical variables may all play a role in the presentation and organ-specific progression of disease. The identification of biological factors involved in disease predisposition and onset will allow the design of appropriately targeted interventions.

Action Plan

  1. The Institute will issue a Request for Applications: Emerging Opportunities in Scleroderma Research, for basic and clinical research on scleroderma. The purpose of the RFA is to foster developmental and traditional research projects to advance our understanding of the causes of scleroderma.
  2. The Institute will sponsor a meeting on Genetics and Genomics of Rheumatic Diseases in November of 2000, together with the American College of Rheumatology, in Philadelphia, PA. At this meeting, a full session will be devoted to the study of genetic factors affecting special populations affected by scleroderma, lupus, and rheumatic diseases of childhood.
  3. In FY 2001, the Institute will launch an initiative to define the Biomarkers of Rheumatic and Skin Diseases. The purpose is to determine the existence and utility of biomarkers or surrogate markers for the identification of populations at increased risk for the development of diseases of interest to NIAMS and/or for the monitoring of progression and/or effectiveness of intervention in these diseases. Scleroderma is included among the disease areas of high priority in this initiative.

(2) Improve the understanding of the natural history, clinical aspects, response to treatment and outcomes in patient populations disproportionately affected by scleroderma.

Collecting data on rare diseases in minority populations is a major challenge for the NIAMS and the research community. Sociocultural data are essential to improving the understanding of causes of health disparities for scleroderma among Native American and other groups. Development of programs to address the health needs of these populations is a high priority.

Action Plan

  1. Continue the support and coordination of data collection and analysis activities through currently funded projects such as the Scleroderma Specialized Center of Research.
  2. Encourage the study of epidemiology and outcomes in scleroderma as part of studies of health disparities under the newly designed Multidisciplinary Clinical Research Centers.
  3. Convene a workshop on health disparities in December 2000 to discuss the biologic and sociocultural bases of health disparities of diseases such as scleroderma, and identify research opportunities. In addition, in collaboration with the CDC and officers from state Public Health Offices, we plan to have a discussion about the research needs and existing gaps and obstacles that limit information dissemination among ethnic and other minorities disproportionately affected by diseases such as scleroderma.
  4. Continue to lead the activities of the National Arthritis Data Group to advise the Institute, the CDC and other agencies on epidemiology and health outcomes research in the area of arthritis. In addition, the group also designs and analyzes data sets that include population-based figures on arthritis, lupus and scleroderma.

(3) Foster research and implementation of prevention strategies that target disproportionately affected scleroderma patient populations.

Basic and epidemiologic research provides the knowledge base to design effective strategies for biologic prevention of disease onset.

Action Plan

  1. Promote the development of reagents and methods to identify populations at risk for disease onset and organ-specific clinical manifestations.
  2. Support the development of new technologies, such as chip technology to identify populations at risk, diagnose disease, assess tissue damage and monitor responses to therapy. Chip technology allows for high-density, comprehensive gene expression analysis, and for measuring the expression of thousands of genes at a time, producing a very detailed picture of how one cell differs from other cells. This provides important information on how the same cell type differs from one population group to another, yielding clues to the basis of health disparities.
  3. Promote research and development of tools and technologies to monitor emerging tissue injury.
  4. Promote research on immunization strategies using new vaccine approaches including gene therapy.

Area of Research Focus: Osteoarthritis

Introduction/Background

  • Osteoarthritis or degenerative joint disease is the most common form of arthritis. It is painful and disabling and is characterized by the progressive loss of joint cartilage.

  • Ethnic differences have been noted -- African Americans have a higher risk of both bilateral radiographic (x-ray defined) knee osteoarthritis and hip osteoarthritis than Caucasians. Obesity is associated with bilateral knee and hip osteoarthritis and is a more important risk factor for bilateral knee osteoarthritis in African Americans than in Caucasians. In addition, studies have shown that African Americans have much lower rates of total knee replacement than whites, even when adjusted for age, sex, and insurance coverage.

  • The NIAMS is encouraging research studies to evaluate risk factors for the development and progression of osteoarthritis in vulnerable populations. Furthermore, the Institute recently sponsored a workshop on the prevention of onset, progression, and disability of osteoarthritis, with sessions aimed at researchers and clinicians, as well as health educators and patients with osteoarthritis. Information and insights from these efforts may lead to the identification and development of potential interventions to treat or prevent osteoarthritis.

  • The NIAMS is supporting a broad spectrum of studies in osteoarthritis, from the most fundamental that are seeking to learn more about the normal function and survival of cells lining the joints, to clinical studies in which new drugs are being developed, to new prevention strategies.

Goals

(1) Develop a public-private partnership to identify biomarkers for osteoarthritis.

Input from the scientific community gathered in a variety of settings, including interviews, workshops, and conferences, indicated the need to identify biomarkers for the evaluation of OA. A consensus exists that current therapies for OA are surgical or pain alleviating modalities. Advances in bone and cartilage biology provide opportunities for developing disease-modifying therapies. Because of the chronic nature of OA, clinical trials that test interventions that prevent or delay the onset of disease using clinical endpoints are lengthy and require very large numbers of patients, and are dependent on radiographic (x-ray defined) data which are of limited value and difficult to standardize.

Characterization of biological factors (biomarkers) of OA (e.g., anatomic characteristics and biochemical parameters) in natural history, population-based observational studies may offer useful measures that accurately predict the course of disease. As valid indicators of disease, biomarkers may serve as candidate surrogate endpoints in clinical trials of therapeutic interventions. A surrogate endpoint is a biomarker (such as the level of cholesterol in the blood) that can substitute for a clinical endpoint (such as a heart attack). If cholesterol were a true surrogate endpoint then drugs that lower cholesterol could be assumed to also reduce heart attacks.

Public health needs and scientific opportunities for OA therapeutic development span the interests of the academic research community, pharmaceutical and biotechnology industries, disease-related advocacy organizations, and regulatory authorities. Recommendations from the scientific community suggest that these organizations explore the use of common resources and mechanisms to conduct investigations that will identify and evaluate biomarkers as candidate surrogate endpoints. To examine options and models for collaborative research, a steering group of interested parties has been formed.

Action Plan

The NIAMS has teamed with the National Institute on Aging in attempting to create a public-private partnership to identify biomarkers for osteoarthritis. We have been joined by other NIH components, the Food and Drug Administration, pharmaceutical companies, and medical organizations in constructing this partnership. The goal is to support clinical and laboratory evaluations of biomarkers and imaging techniques as potential surrogate endpoints for clinical trials that assess the efficacy of osteoarthritis disease-modifying interventions. There will be a particular focus on people from minority populations in these studies.

(2) Follow-up on the recommendations made at the July 1999 conference, "Stepping Away from OA: A Scientific Conference on the Prevention of Onset, Progression, and Disability of Osteoarthritis."

The conference participants – including both scientists and patients with osteoarthritis – reviewed the current state of the science regarding the prevention of onset and progression of osteoarthritis and the disability it causes, and received critical input from experts currently working in the field; examined various prevention interventions targeted to the general public, to people who have osteoarthritis, and to those at higher-than-average risk of developing osteoarthritis; identified promising opportunities for further investigation; and stimulated scientific collaboration, as well as provided public information on treatment and prevention strategies for osteoarthritis. This was a multidisciplinary conference and was of interest to researchers and practitioners in orthopaedics, rheumatology, epidemiology, rehabilitation, prevention, and health education, as well as patients and their families.

Action Plan

The NIAMS will target research on prevention, particularly in vulnerable populations who are disproportionately affected by osteoarthritis. We will actively encourage research applications in this area.

(3) Reduce racial disparities in total joint replacement.

Total joint replacement is a successful procedure for end-stage arthritis of the major weight-bearing joints. More than 500,000 hip and knee replacements are done annually in the United States. For reasons that are not fully understood, more of these procedures are performed in whites than in African Americans. The rates of replacements do not reflect the prevalence of this disorder in different ethnic groups. The 1994 NIH Consensus Development Conference on Total Hip Replacement reported that the prevalence rate of hip implants (fixation devices and artificial joints) was 4.2 per 1,000 in whites as compared to 1.7 per 1,000 in African Americans. The disparity by race increases with age. These findings were confirmed by an analysis of Medicare claims data that focused solely on total hip replacement. Observed differences in the rate of total hip replacement by race may reflect a disparity in access, referral for care, or patient knowledge and preferences for African Americans. Additionally, individuals with higher income were 22 per cent more likely to undergo total hip replacement than were individuals with low income.

A 1996 review of Medicare data determined that the likelihood of receiving total knee replacement was a function of age, gender, and race. In the United States, this surgery was 1.5 times more common in whites than African Americans. A recent study from Canada noted that there is underuse of arthroplasty (joint replacement) for severe arthritis in both men and women, but the degree of underuse was more than three times greater in women then men.

Action Plan

Develop refined methods to further analyze the underlying reasons for the disparate ratio of total joint replacement utilization. In this way, the benefits of total joint replacement can be extended to a segment of the population that may benefit, but appears to have limited utilization.

Area of Research Focus: Vitiligo

Introduction/Background

  • Vitiligo is a disease of the skin that is characterized by a loss of pigment in all people who are affected. The psychological and social consequences are particularly profound in people of color who are affected.

  • The production of melanin results in the development of normal skin color and tanning following sun exposure. Abnormalities of melanization can be hereditary, resulting in various forms of albinism, or can be acquired, resulting in diseases such as vitiligo. Through genetic studies of albinism, the molecular basis for normal and abnormal pigmentation has been uncovered over the past several years. These studies have primarily focused on the tyrosinase enzyme and other proteins associated with it. Vitiligo, on the other hand, is thought to be an autoimmune disease in which melanocytes (pigment cells) are destroyed.

  • As opposed to albinism where melanocytes are present but are not functioning properly to produce pigment, vitiligo results from an absence of melanocytes. An animal model of vitiligo appears to be similar to the human disease vitiligo in that it is a patchy, acquired skin disease and is associated with circulating autoantibodies that bind melanocyte proteins. These animal studies further understanding of the normal melanization process. The new understanding of the role of tyrosinase related protein-1 suggests its possible involvement in vitiligo. If these results are similar in humans, they may provide a basis for better treatments and/or prevention.

  • Vitiligo is a sporadic disease with significant familial aggregation. Thus, it will benefit from molecular genetic approaches and the Human Genome Project. It is a disease of the pigment-producing system, and thus basic research on melanocytes and pigmentation as well as melanoma research will be relevant. It is thought to be an end-organ specific autoimmune disease and so will benefit from research in immunology and autoimmunity.

Goals

(1) Identify the gene(s) that are associated with vitiligo, first in the familial cases, and then determine if the same gene(s) are defective in sporadic cases. Once the gene(s) are identified, identify the gene defects and the proteins and protein abnormalities, and determine how these changes result in the disease itself. Utilize this information to design predictive, diagnostic and treatment approaches.

(2) Pursue a greater understanding of the process of melanogenesis (pigment formation), the molecules involved in the process itself and its control, and changes seen in diseases, such as vitiligo and melanoma. Much cross fertilization from the large melanoma efforts in NCI and elsewhere, CGAP (the Cancer Genome Anatomy Project) and others, is to be expected, but coordination will be necessary. Some of the advances in this goal area will come from the molecular genetics as described above.

(3) Increase knowledge of the autoimmune mechanisms involved in tissue- specific autoimmune diseases such as vitiligo.

Action Plan

  1. Initiate a study of the role of genes in patients and family members with vitiligo.
  2. Identify scientific opportunities to better understand the process and disruption of melanogenesis.
  3. Encourage and support studies that identify the antigens involved (which may come out of work in areas #1 and 2 above), and develop new animal models and/or foster additional research in the few available animal models for vitiligo. Identify trigger factors, and use all this information to design preventative and treatment approaches.

Area of Research Focus: Keloids

Introduction/Background

  • Keloids are an abnormal exuberant form of wound healing in which excessive connective tissue is laid down at the wound site, and is not remodeled normally (as distinguished from hypertrophic scars in which there is excess connective tissue initially, but remodeling takes place over time). Keloids are seen predominantly in African American individuals.

  • Keloid development is often sporadic, but there is significant family clustering as well as ethnic and racial differences in prevalence. Thus, advances in molecular genetics and the Human Genome Project will benefit research on keloids. Since the material in the keloid is collagen, laid down by fibroblasts, basic research in collagen synthesis and remodeling, fibroblast biology and growth control, and drugs that affect these processes will aid our understanding of this disease. As keloids are the opposite side of the failure to heal chronic wounds (an area in which the NIAMS has led the coordinated NIH research effort), the advances in this area may have application to the study of keloids.

Goals

(1) Identify the gene(s) for keloid formation, initially in the familial cases, determine the defects, the normal and abnormal protein products of this gene(s), and how these abnormalities produce disease. Use this information to design predictive, diagnostic, and treatment strategies.

(2) Promote studies of collagen deposition and remodeling, fibroblast growth and metabolism and its control. Gene(s) and proteins identified in # 1 above are likely to be important in this process.

(3) Apply knowledge from the larger wound healing portfolios of several NIH institutes to the study of keloids, particularly leads derived from animal model systems and clinical trials. Develop additional animal model systems for keloids.

Action Plan

Areas in which the NIAMS will encourage research applications include gene identification, mutation analysis, fibroblast growth control, collagen synthesis, deposition and remodeling, and animal model development.

Infrastructure or Cross-Cutting Issues

  • The NIAMS initiated support for a new mechanism, the Collaborative Arthritis and Musculoskeletal and Skin Diseases Sciences Award, to support research collaborations between investigators at institutions with substantial minority enrollment and investigators at research-intensive institutions.

  • The NIAMS Small Grants Program gives special emphasis to applications from institutions with substantial minority enrollment as well as targeting Historically Black Colleges and Universities.

  • The Minority Investigator Research Supplement Program is an NIH-wide program in which the NIAMS participates.

  • The Minority Biomedical Research Support Program is an NIH-wide program in which the NIAMS participates.

Meetings

  • Health disparities meeting in December 2000: The NIAMS is expanding its commitment to better understanding of health disparities. The objectives of this initiative are: (1) to understand the genetic and non-genetic factors related to susceptibility and severity of disease in especially vulnerable populations; (2) to develop new approaches to understanding the epidemiology and prevention of diseases of bones, muscles, joints, and skin, especially as they affect minority populations; and (3) to develop and test strategies to narrow the gap in health disparities.

  • NIAMS lead in NMA in 2001: The NIAMS is working with the National Medical Association (which represents 20,000 African American physicians) to hold a plenary session on lupus and other NIAMS topics of interest to NMA membership at the 2001 national meeting in Nashville, Tennessee.

Recruitment of Minority Students to Research Careers

  • The NIAMS developed and distributed the booklet, "How NIAMS Can Help You Along the Pathway to Your Research Career," and posted the full text on our Web site.

  • The Institute has targeted the hiring of minority scientists to our research programs, including people at all stages of their careers.

  • Institute staff meet with African American students and faculty at Historically Black Colleges and Universities and other academic centers through participation in annual meetings of the National Medical Association, the Association of Minority Health Professions Schools, and the Student National Medical Association.

  • The NIAMS will work to promote the training of clinical investigators at Historically Black Colleges and Universities as well as at minority academic health centers.

Public Information/Outreach

We are committed to a comprehensive program of information dissemination to patients and to their health care providers. Research advances are of limited value if they never reach the arena of health care, and they miss the goal of improving public health for all Americans. The NIAMS supports information dissemination through three primary means: the Institute's Office of Communications and Public Liaison in the Office of the Director, the National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse, and the NIH Osteoporosis and Related Bone Diseases ~ National Resource Center. In addition, we work closely with many voluntary and professional societies to both learn their needs and views and to disseminate our research findings to them. We have also targeted our information to particular areas of need (including "Lupus: A Patient Care Guide for Nurses and Other Health Professionals" and "What Black Women Should Know About Lupus") and to diverse populations (including printed information and our toll-free information line in English and in Spanish). We will continue to build and strengthen these relationships with the community and will strive to make our information accessible to the vast and diverse populations affected by the diseases within our mandate.

NIAMS Initiatives in Developing Culturally Appropriate Health Information

  • The NIAMS developed an article on lupus, "El Pulso de la Salud: Lupus," that was featured in the NIH section of the Spanish-language magazine Pro Salud. The Institute has distributed more than 4,500 copies of this reprint at health fairs and exhibits and by request.

  • The Institute has added a free number for its NIAMS Information Clearinghouse, and the line is answered in both English and Spanish. This service enables people who do not have Internet access or who cannot afford a long-distance call to contact the clearinghouse for information.

  • We also developed an NIAMS bilingual brochure on arthritis (in Spanish and English). ¿Tengo Artritis?- Do I Have Arthritis? is a brand-new publication of the NIAMS, in cooperation with the Arthritis Foundation. This colorful booklet was developed with assistance from experts in rheumatology, orthopaedics, and Hispanic health and communications and with input from Spanish-speaking people who have arthritis. It will be promoted widely to Hispanic audiences and distributed by both the NIAMS and the Arthritis Foundation and its chapters. The project will be presented at the annual meeting of COSSMHO, the National Coalition of Hispanic Health and Human Services Organizations.

  • The comprehensive manual, LUPUS: A Patient Care Guide for Nurses and Other Health Professionals, was reviewed by members of the National Black Nurses Association, as well as physicians and nurses who are experts in lupus. It was published with the NIH Office of Research on Minority Health, Office of Research on Women's Health, and National Institute of Nursing Research, as well as the Lupus Foundation of America and the SLE Foundation. Over 16,000 copies have been distributed, and it has been promoted to general and minority medical professionals via newsletters, print public service ads, exhibits at conferences, notices on the NIAMS Web site (where it also appears in full text), and mailings to targeted audiences, including 700 community health centers in medically underserved rural and urban areas.

New NIAMS Intramural Research Program Outreach Initiative

Another example of our outreach efforts is the newly created Health Partnership Program: A NIAMS Diversity Outreach Initiative. The Scientific Director of the NIAMS identified the need for increased outreach to the neighboring populations affected by the diseases and disorders within the Institute's mission as a high priority. The Health Partnership Program was derived from that need and it will focus on four key areas: (1) public education, (2) patient care, (3) recruitment to research careers, and (4) access to clinical investigations. We are working with some of the leaders of the African American community in the Washington area to address the needs and opportunities in arthritis and other rheumatic diseases in this group of people.

A meeting was held in late February to solicit feedback from local community representatives on the draft health promotion plan, and to learn about "success stories" from other organizations with a history of outreach to minority populations. We also discussed collaboration opportunities and potential barriers to future outreach efforts.

Once the local plan has been refined, implemented and evaluated, we will expand our outreach to other populations and other disease areas. As this initiative evolves, we expect to build a network of both local and national partners who will provide ongoing advice and feedback on our efforts. We will also tap the expertise of other NIH components as we move forward in addressing health disparities.

Finally, we are working to develop a community center in the Adams-Morgan section of Washington, D.C. -- a medically underserved area. The populations that are currently served in this area are primarily Hispanic and African American. Unity Health Care is a major health care provider in this area and we will partner with them to develop a general rheumatology center. The benefits of this community center include (1) providing specialized care to an under-served population; (2) learning about the determinants of health disparity in minority populations, including the natural history of rheumatic diseases, contributing factors, diagnostic methods, and effective treatments; (3) recruiting patients for specific protocols at the NIH; and (4) providing the opportunity to study the natural history of rheumatic diseases in a particularly under-served minority population whose rheumatology care has been very limited. Our intent is to transport patients from the community center to the NIH as well as from their homes to the center as needed. The Institute is working actively with a wide variety of health care providers and community leaders in Washington, D.C. to make them aware of this new and very promising rheumatology health care center.

Conclusion

Many diseases within the mission of the NIAMS disproportionately affect people in minority populations. This strategic plan serves as a complement to our Institute's Long-Range Plan for FY 2006 - 2009, and will serve as a guide for our future efforts to address and decrease these health disparities. We recognize that this document is fluid and we anticipate updating it from time to time based on scientific progress as well as comments we receive.

1 Health disparities are defined by the NIH as differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the United States. Research on health disparities related to socioeconomic status is also encompassed in the definition.