NIAMS IR Partners Newsletter, Spring 2002

Historical document

Inside this issue:

From the Scientific Director . . .

Photo: Dr. Peter LipskyWe are pleased to bring to our readers this special issue of IRPartners, focusing on our Community Health Center in Washington, D.C. In this issue, you'll meet some of the staff at the center and hear about the personal and career experiences that have brought them to the center. We'll also provide some health facts on rheumatic disease, the medical field on which the center is currently concentrating its efforts.

Most of all, we're happy to share with you our feature article about the center, its purpose and its role in our larger goal of reducing health disparities.

We hope you enjoy this issue and share in our excitement over the NIAMS Community Health Center, a component of the National Institutes of Health, in collaboration with Unity Health Care, Inc.

Peter E. Lipsky, M.D., Scientific Director
National Institute of Arthritis and Musculoskeletal
and Skin Diseases, National Institutes of Health

A New Community Health Center, a Different Approach: NIAMS Expands into D.C. to Focus on Health Disparities

By Kelli Carrington

Photo: A Doctor at the Health Center examines a patient.
Dr. Gregory J. Dennis examines Mr. Juan Valenzuela at the NIAMS Community Health Center, a collaboration with Unity Health Care.

Rheumatic diseases such as lupus and osteoarthritis are all too familiar to the millions of people affected by them. These chronic conditions bring bouts of pain, among other symptoms, that often limit one's ability to accomplish daily living activities. Simple actions like getting out of bed, walking up stairs and washing dishes become monumental tasks that may be achievable on a "good day." These diseases are generally more prevalent in women, and certain forms occur more frequently and severely in some minority groups. Researchers at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a component of the National Institutes of Health (NIH), have developed a new approach to better understand the nature of rheumatic diseases and their impact on minorities.

The NIAMS Community Health Center is NIH's first community-based clinic devoted specifically to rheumatic diseases. It sits in the heart of a multicultural community in northwest Washington, D.C. The Health Center serves the local Hispanic/Latino and African-American communities, two groups disproportionately affected by some rheumatic diseases.

For example, lupus, an autoimmune disease with symptoms ranging from a mild skin rash to major organ failure, is more common and its effects more severe in African-Americans and Hispanics/Latinos. Osteoarthritis, a disease marked by gradual loss of joint cartilage and other changes that cause joint pain and disability, also occurs more frequently in African-Americans. Both diseases limit a patient's ability to function independently and add to their family's health care expenses.

"Almost every household in America is challenged by rheumatic diseases in some way," says NIAMS Director Stephen I. Katz, M.D., Ph.D. "Through the Health Center, we hope to begin reducing the illness and disabilities associated with these conditions."

Researchers in the Health Center take a multifaceted approach to health disparities research, focusing on researcher training and recruitment, patient care, clinical studies and health education. They also involve community members by providing health and research training and employment opportunities. "This is a new approach for us that hopefully will become a model for other community-based research projects," says Peter E. Lipsky, M.D., NIAMS scientific director. "We hope our activities in the Health Center will lead us to new research opportunities that address the gaps in knowledge about rheumatic diseases in minority communities."

Enhancing Researcher Training

The lack of information about health disparities in rheumatic diseases is due in part to the limited number of physicians trained in rheumatology and health disparities research, as well as limited access to the communities affected. The Health Center responds to the call for more of these physicians by training health care professionals and researchers who are interested in rheumatic diseases and minority health. It also increases access to local minority communities by offering studies that include standard specialty care in a community-based setting that is accessible, familiar and comfortable to community members.

Research physicians encounter adult patients of various ethnicities who have different forms of disease. Their symptoms can range from mild but nagging pain to major disabling problems. Gregory Dennis, M.D., fellowship program director at NIAMS, says, "This clinical setting gives our physicians a panoramic view of rheumatic diseases. It increases the breadth and depth of their training by exposing them to a diverse group of diseases in a real-life setting. They get the opportunity to simultaneously consider the biological and emotional impact these diseases have on a population to which they may otherwise not be exposed."

In addition to the clinical training, research physicians, along with other health professionals at NIAMS, attend cultural sensitivity training sessions. This training helps staff broaden their understanding of cultural differences and how they impact health-related behaviors and decisions.

Access to Care and Clinical Studies

Patients attending the Health Center gain access to rheumatology specialists for medical care and health information that has not been readily available. A patient visit begins with a nurse practitioner who screens for symptoms of rheumatic diseases. If signs or symptoms are found, patients are referred to a rheumatolgist for specialized medical attention. Patients who do not need to see a rheumatologist are referred to the appropriate medical provider.

When visits to a rheumatologist are warranted, patients are offered enrollment in the Institute's Natural History Study of Rheumatic Diseases. In this study, physicians observe the course of disease while treating patients with standard medical procedures and medications. Patients sign a consent form and maintain the option to withdraw from the study at any time. "We are looking to better understand how rheumatic diseases develop and how they impact health status," says Barbara Mittleman, M.D., director of scientific interchange at NIAMS. Many of the staff are bilingual in English and Spanish, helping them communicate with Spanish-speaking patients.

Not all medical services are available at the Health Center's Washington, D.C., location, so radiologists, physical therapists and other medical professionals at the NIH provide the medical team with additional help. Patients who need X-rays, magnetic resonance imaging, lab work and physical therapy go to NIH's Warren Grant Magnuson Clinical Center in Bethesda, Md. To give them a smooth transition to the NIH facility, patients are escorted via shuttle bus by an escort who is trained to provide information and companionship while accompanying patients to their medical appointments. Patients also have access to other clinical studies taking place at NIH.

Empowering Patients Through Health Education

Medical services are only part of the benefits the Health Center brings to the community. Health education programs offer opportunities to learn about and practice the latest methods for treating disease and preventing disabilities. "Too often people tell me they don't know what type of arthritis they have or they have not heard of the newer medications," says Janet Austin, Ph.D., director of the Office of Communications and Public Liaison at NIAMS. "We want to change that," she continues. "We want to empower people to take an active role in their health care by giving them information and treatment options."

Physicians, nurses, nutritionists and health educators from NIH and local voluntary organizations hold classes and one-on-one sessions at the Health Center and other community facilities. These include nutrition counseling and healthy cooking classes, as well as exercise programs, arthritis education seminars and support group meetings. Many of these programs are organized by local chapters of the Arthritis Foundation, the Lupus Foundation of America and the National Fibromyalgia Partnership Inc. "Partnerships with voluntary organizations are invaluable to our health education and promotion efforts," says Dr. Lipsky. "Their experiences and connections with community members help us offer programs that meet the community's needs."

Designing Efficiency and Comfort

So what's the Health Center's physical appeal? Remarkably, within its 600 square feet fit a reception area, nurse's station, consultation room, four exam rooms and seven computer workstations. Three of the exam rooms have exam tables, dressing closets, sinks, medical supplies and computer workstations. A fourth exam room holds a large, comfortable chair that patients use while receiving intravenous (IV) treatments. It also contains a video monitor so patients can view health education programs.

A soothing color scheme of teal, lavender, coral, rose and sand covers the stone-textured walls and large tile floors, creating a relaxed and open atmosphere. The recessed flourescent lighting in the ceiling, along with the square casement windows above the exam rooms and surrounding the nurses station, add bright yet soft illumination throughout the suite.

"We wanted to make people feel comfortable in the Health Center, so aesthetics played an important role in the suite's design," says Dr. Mittleman. "It was essential for us to consult community representatives during the design phase," she continues. "They helped us create a setting that appeals to our patients, many of whom live in the community."

Initiating the Health Center

The Health Center is part of a larger initiative called the Health Partnership Program (HPP), which aims to reduce health disparities in rheumatic, musculoskeletal and skin diseases. The HPP is composed of NIAMS staff, community leaders and voluntary organizations. Program areas include public health education, patient care, clinical investigations and research career recruitment.

Community partners collaborate with the Institute on strategies to gain the community's participation in program activities, including the Health Center. Its location is one example of these collaborations. Through a partnership with Unity Health Care Inc., a community-based health management company, NIAMS rents an X-ray suite in one of Unity Health Care's medical facilities for a mere one dollar per year. Unity Health Care provides medical care to over 30,000 medically underserved residents in Washington, D.C.

A partnership with Howard University created an opportunity for seven third-year architecture students to draft plans for the Health Center as a class assignment. The students' designs were so well suited to the needs of the Health Center that many of the features in their designs ended up in the final plans. "Collaborations like these are win-win," says Dr. Lipsky. "We all learn from each other, and together we can help the local communities achieve healthier outcomes," he concludes.

Initially, the HPP concentrates on rheumatic diseases in the Hispanic/Latino and African-American communities. Eventually, it will include other diseases and additional minority groups. The program responds to the Race and Health Initiative instituted in 1998 under the U.S. Department of Health and Human Services. The initiative is a departmental effort to eliminate racial and ethnic health disparities.

The NIAMS plans to celebrate the Health Center's opening in the summer. Look for announcements in the coming months. The NIAMS Community Health Center is located at 3020 14th Street, N.W., Washington, D.C. 20009. For information call (202) 673-0000.

Margarita Velarde, R.N., M.S.N.,
certified family nurse practitioner

Growing up in Lima, Peru, Margarita Velarde Photo: Margarita Velarderemembers opening doors for patients and pharmaceutical representatives when she was 7 years old. Her father is a pediatrician, and his office is in their home. With this background, Ms. Velarde says it was only natural she'd go into the medical field. She worked to put herself through school and earned a nursing degree from Northern Virginia Community College in Annandale, Va. She later attended George Mason University in Fairfax, Va., where she received a bachelor's degree. She considered becoming a doctor, but couldn't leave nursing behind. In 2000, she graduated from Marymount University in Arlington, Va., with a master of science degree in nursing.

Ms. Velarde came to NIAMS from Alexandria Hospital in Virginia, where she worked as a surgical nurse. She heard that NIAMS was looking for a bilingual nurse practitioner for the Community Health Center, and she applied. "I know I made the right decision," Ms. Velarde reports. Ms. Velarde loves interacting with the patients at the center and helping people get the care they need. She's especially pleased to be serving the Spanish-speaking community in the area. The majority of patients who visit the center speak only Spanish.

Ms. Velarde says, "I'm familiar with the culture, and they find it easy to talk to me." The physicians who work at the center are learning some Spanish along the way. Ms. Velarde remarks, "When a doctor attempts to speak to patients in their own language, they are so much more at ease." The center once had a patient who spoke only Vietnamese. Ms. Velarde is pleased to report, "We tried our best and found someone who could speak Vietnamese--our very own pharmacist."

Being a nurse is a rewarding profession, says Ms. Velarde. "When patients and families come up to you and thank you for all you've done, you really feel appreciated." She encourages people in the community to come to the center if they have arthritis and spread the word to their relatives and friends. "Come and visit us. If we don't know the answers to your questions, we'll try to find them. We are here for you," she says.

Hilda Maduro, certified nursing assistant

Raised in Ponce, Puerto Rico, Hilda Maduro pursued her nursing degree at Antillian College in Mayaguez, Puerto Rico. She plans to finish nursing school this summer at Howard University in Washington, D.C.

Photo: Hilda MaduroMs. Maduro spent the previous 10 years in the NIH nursing department, working on the campus in the clinical center. She worked for several institutes during that time, including NIAMS, and most recently the National Institute of Dental and Craniofacial Research, where she assisted with oralmaxillofacial surgeries and ear, nose and throat procedures. She was interested in moving into a job where she could use her nursing talents to help the Spanish-speaking community. When NIAMS began looking for a bilingual nursing assistant at the new Community Health Center, she made some inquiries. The job was just right. Ms. Maduro applied, and she got the job.

"I love this place, working with the community," Ms. Maduro says. "People come here with needs, and they appreciate the treatment, service and attention from someone who can communicate with them in Spanish." She spends her day setting up examination rooms, assisting the doctors, drawing blood, keeping charts in order, and, of course, translating. Ms. Maduro reports, "I'm happy to do the best for the patients."

Ms. Maduro is glad to work at the center, where she is treated as a professional and there is good communication between the doctors and nurses. "When I started working here, many people said, 'Welcome to NIAMS.' It was very nice to see co-workers I used to work with. I like so many things about this place--too many to mention," she says.

Alexis Del Rio-Cumba, patient service representative

Photo: Alexis Del Rio-CumbaAlexis Del Rio Cumba worked as a salesperson in San Juan, Puerto Rico, where he learned a lesson he's found useful working at the Community Health Center: Word of mouth is the best way to advertise. "Referrals from family and friends work best," he says. "I hand out information to children playing in the lobby and ask them to give it to their parents who are waiting for appointments in the office next door. The parents may know someone who needs our assistance."

Mr. Del Rio grew up in Guaynabo, Puerto Rico, and received his bachelor's degree in fine arts at the University of Puerto Rico in San Juan. He was on vacation in the D.C. area when he learned about a patient service position at the NIH Clinical Center. He applied and got the job, joining the Community Health Center in September 2001. It's a change from his former career as a salesperson, but Mr. Del Rio has retained the ability to interact with people. He's pleased to be learning about health issues now, saying, "The efforts here are noble. If people come in and they're sick, we can help. We can ease their pain."

Mr. Del Rio spends a large part of his day talking with patients. His responsibilities range from giving patients directions to the center to interpreting for the patients. "After their first visit, they're much more relaxed," he says. Mr. Del Rio says being bilingual and understanding the cultural and social issues of the community help him make people more comfortable with the thought of participating in an NIH research study. "I go over all the forms with them, and if they have any questions about the forms or the actual research study, they can ask the doctor for more information," he reports.

Mr. Del Rio likes interacting with the community--his own community. "I like talking and educating people about what we do at the clinic," he says. "People are glad we're here. Some ask me when the NIH will set up similar clinics for other health problems in other cities."

Health Center Hours

The NIAMS Community Health Center is located at Unity Health Care, 3020 14th Street, N.W., Washington, D.C. 20009, next to the Columbia Heights Metro station. Hours of operation for patient services are:

Monday8:30 a.m. to 3:30 p.m.
Tuesday8:30 a.m. to 4:00 p.m.
Wednesday11:00 a.m. to 5:00 p.m.
Thursday8:30 a.m. to 4:00 p.m.

Call 202-673-0000 for more information.

Did You Know? . . .

By Susan Bettendorf

If you've been diagnosed with a rheumatic disease, you may wonder what exactly rheumatic means. Even physicians do not always agree on whether a disease is considered rheumatic. If you look up the word in the dictionary, you'll find it comes from the Greek word rheum, which means flux--not an explanation that gives you a better understanding of your condition. Here's a simpler definition: In medicine, the term rheumatic describes a disease that impairs the joints or soft tissues and causes chronic pain.

Many people use arthritis to refer to rheumatic diseases; however, the different kinds of arthritis comprise just a portion of the rheumatic diseases. Arthritis means joint inflammation, and it causes swelling, redness, heat and pain at the site of tissue injury or joint disease. Osteoarthritis is the most common type and affects cartilage, the tissue that cushions the ends of the bones within the joints.

Some rheumatic diseases are also connective tissue diseases. Connective tissue is found all over the body--in skin, blood vessels, organs, muscles, ligaments, tendons and joints. It is the material between the cells of the body that gives the structures of the body their form and strength. This "cellular glue" also helps deliver nutrients to the tissue. Soft tissue is just another term for connective tissue. An example of a connective tissue disease is scleroderma, a disease in which the body overproduces collagen (a fiber-like protein) in the skin, blood vessels and often the internal organs.

Some rheumatic diseases are also autoimmune diseases. Autoimmune diseases occur when the body's immune system mistakes the body's own healthy cells and tissues as invaders and attacks them. Rheumatoid arthritis is an autoimmune disease that causes pain, swelling, stiffness and loss of function in the joints. In rheumatoid arthritis, the immune system attacks a person's own synovium, the tissue inside the joint capsule. White blood cells that are part of the normal immune system travel to the synovium and cause warmth, redness, swelling and pain in the joint.

Many rheumatic diseases fall under several of the different disease classifications defined above. Rheumatoid arthritis is a great example; it is

  • an autoimmune disease--the body attacks its own tissues.
  • a connective tissue disease--the synovium is a connective tissue.
  • a form of arthritis--it causes inflammation in the joint.
  • a rheumatic disease--it impairs the joints and soft tissues and causes chronic pain.

Of course, not all connective tissue and autoimmune diseases are rheumatic diseases. Only if they are accompanied by chronic pain and impairment of the joints or soft tissues are they rheumatic.

NIAMS Has Free Health Information

NIAMS has free health information (some in Spanish) available to the public, health professionals and organizations. Information is available on arthritis, lupus and other rheumatic diseases, skin disorders, joint problems and musculoskeletal diseases.

Contact the NIAMS at 1-877-22-NIAMS (free call), TTY: 301-565-2966. Check our Web site at www.niams.nih.gov/Health_Info/. Many of our publications can be printed directly from our site.

Free information on osteoporosis, Paget's disease of bone, osteogenesis imperfecta, primary hyperparathyroidism, and other metabolic bone diseases and disorders is also available from the NIH Osteoporosis and Related Bone Diseases~National Resource Center (NIH ORBD~NRC). Contact the NIH ORBD~NRC at 1-800-624-BONE, TTY: 202-466-4315, or at www.osteo.org.


National Institute of Arthritis
and Musculoskeletal and Skin Diseases/NIH

Building 31, Room 4C02
31 Center Drive, MSC 2350
Bethesda, MD 20892-2350

Produced by the National Institute of Arthritis
and Musculoskeletal and Skin Diseases/NIH
Office of Communications and Public Liaison

Building 31, Room 4C02
31 Center Drive
Bethesda, MD 20892
Phone: 301-496-8190
Fax: 301-480-2814
E-mail: bettends@mail.nih.gov
Web site: www.niams.nih.gov

Stephen I. Katz, M.D., Ph.D., Director

Peter E. Lipsky, M.D., Scientific Director

Barbara B. Mittleman, M.D., Director,
Office of Scientific Interchange

Rachel Moore Weller, Editor

Susan Bettendorf, Associate Editor