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URBAN CALL – Healthy Living Every Day! Edition
Clinical Trials: the search for new treatments URBAN CALL STAFF REPORT
Informed consent is a safeguard for those participating in clinical trials.
the general public. Its Web site (www.ClinicalTrials.gov) lists many on-going clinical trials. It also sums up the benefits to someone who participates in a clinical trial:
Clinical trials are used to study new drugs and new treatments that prevent, treat or decrease the symptoms of diseases. Clinical trials are essential to determine if a ❏ Access to new investigational treatments and drugs that are new investigational drug, device or not otherwise available to the a treatment is safe and effective. The Food and Drug Administration public (FDA) requires careful testing ❏ Expert medical care at leading before a new drug can be health care facilities during the approved for use in patients. The trial National Institutes of Health (NIH) ❏ Satisfaction of helping others in is a leading resource on conductthe future by contributing to ing clinical trials and providing medical research information about other trials to
When someone is interested in joining a clinical trial, before any testing occurs they must read and sign an informed consent form. The purpose of informed consent is to provide important information about a clinical trial so a person can make an informed decision regarding their participation in the clinical trial. This information includes all the benefits and risks of participating in the clinical trial as well as information regarding the obligations of the participant — for instance
the number of doctor visits required and what type of procedures will take place. This form also tells the person information such as how their visits will be conducted, how their privacy will be guaranteed, what compensation they may receive for their time and effort, what risks may be involved with the treatment, and that they may decide to stop participation at any time. Finally, informed consent means that a person knows that their right to ethical treatment is protected by law.
Race and Research high incidence of health problems like sickle cell disease, diabetes, kidney failure, high Traditionally, African-Americans have blood pressure and depression, all of which not participated in large numbers in clinimay be treated with new medicines. Another cal trials. Memories linger about the misreason is that drugs may work differently in treatment of African-American men in a different races. African-American participa40-year government study at the Tuskegee tion in clinical trials now may help doctors Institute. The Tuskegee Experiment, as the treat African-Americans in the future. study is often referred to, began in the It is important to gather information 1930s and knowingly misled these men that would provide the best treatment for about their treatment. Today ethical stan- each patient. Dr. Michael Caligiuri, director dards and safeguards like informed conof the Ohio State University Comprehensive sent are in place. Laws have been passed Cancer Center, wrote in a paper entitled, to protect the rights of individuals. More Minorities in Early-Stage Cancer Trials It is critical that African-Americans take that “Drugs don’t act the same way in all part in clinical trials because they have a people; as clinicians we have to be aware
URBAN CALL STAFF REPORT
of any differences among various ethnic groups.” The National Medical Association (NMA), a group that represents more than 25,000 African-American physicians, says that more African-Americans would participate in trials if more black physicians were involved. The association cited other reasons for low participation in The Journal of the National Medical Association, stating these reasons include a low awareness of trials, mistrust of the medical community, economic factors such as travel expenses, a lack of time for office visits and a lack of child care assistance, as well as patient-doctor communication gaps.
Join the SMSi Community of Networks Volume 2, Issue 1 4265 Brownsboro Road, Suite 225 ❍ Winston-Salem, NC 27106-3425 www.segmentedmarketing.com FAX: (336) 759-7212 ❍ PHONE: (336) 759-7477 Sponsored by Icagen Inc. and McNeil Consumer & Specialty Pharmaceuticals Publishers: Lafayette Jones, Sandra Miller Jones
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©2005 Segmented Marketing Services, Inc., 4265 Brownsboro Road, Suite 225, Winston-Salem, NC 271063425. Urban Call is published by SMSi as part of a strategic alliance with Segmented Marketing Services Inc. (SMSi) and Piedmont Publishing, a Media General company. All rights reserved. Reproduction in whole or in part of any material in this publication without the written permission of SMSi is expressly prohibited. Publishers reserve the right to accept or reject all advertising matter. SMSi, founded in 1978, is a Winston-Salem, N.C., minority-owned national marketing, promotion and publishing company that specializes in helping major companies and organizations better serve people of color. This publication is distributed to 300,000 health champions in the SMSi Beauty Salon, Barbershop, Church and Health Care networks. SMSi distributes millions of free product samples, publications and consumer offers through its national networks of African-American and Hispanic churches, beauty salons, barbershops, entertainment venues and health-care networks. Urban CallTM and SMSiTM are registered trademarks of Segmented Marketing Services Inc.
The Healthy Living Every Day! initiative is inviting health professionals and health champions to join the health-care network of the SMSi Community of Networks, which currently has 5,000 members, by visiting www. SegmentedMarketing.com or calling (336) 759-7477. Your church, your beauty salon or barbershop can also become a part of the network of communities and receive free product samples and valuable information at no cost or further obligation. The church network includes 7,000 churches; the beauty network has 30,000 salon professionals, and the barber network has 10,000 professional barbers. If you are a youth group coordinator, you may want to check out the youth network (1,000 venues). The entertainment network has 2,000 venues.
Medical and pharmaceutical communities recognize these barriers and are trying to solve the problems. The benefits of participating in clinical trials may outweigh the barriers, suggests Dr. Donn Young, a research scientist at Ohio State. “Over 70 percent of all children with cancer are involved in clinical trials — and just look at the enormous strides we are making in childhood cancers like leukemia.” Experts agree that mutual trust and respect among physicians, researchers and patients is the most effective formula for unlocking the doors to new medicines that will help solve difficult health problems and improve the quality of life.
STAMP PROMOTES AWARENESS
Photo by Robert Boston/Washington University School of Medicine
St. Louis Postmaster Mark H. Anderson (from left), Missouri Sen. James Talent, Dr. Michael DeBaun of the Washington University School of Medicine and sickle cell patient Isaac Singleton unveil the Sickle Cell Disease Awareness stamp, at the St. Louis main post office. To order the stamp visit www.usps.com or phone (800) stamp-24 or (800)782-6724.
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URBAN CALL – Healthy Living Every Day! Edition
Healthy Living — Every Day! Advisory Board Segmented Marketing Services, Inc. (SMSi) Healthy Living — Every Day! (HLED) Advisory Board is a distinguished panel of national leaders, experts and professionals who have been gathered to advise on health and nutritional issues in the ethnic community. They have been instrumental in the launch of the national HLED campaign. The newest members of the board include Dr. Katie B. Catalon, president of the National Beauty Culturists’ League (NBCL), Dr. V. Essia Barnett-Battie, NBCL Indiana state president, and national Sickle Cell Disease Association of America board member. Janet Brooks, former vice president of cultural health initiatives for the American Heart Association and founder of Fortitude Health & Wellness in Dallas, also joins the board.
James D. Branch, M.D. Ophthalmologist and Maya Angelou Research Center on Minority Health board member
John Stroger, president Cook County Board of Commissioners
Joseph Swafford, M.D. Melba Swafford, M.D.* *Past chairman, Houston SCDAA chapter
James D. Branch (HLED co-chairman) Ophthalmologist Board Member Maya Angelou Research Center on Minority Health Wake Forest University Health Sciences Winston-Salem, N.C. John Stroger (HLED co-chairman) President Cook County Board of Commissioners Chicago
Fortitude Health & Wellness Dallas
Department Of Public Health, Chicago
Dr. Katie B. Catalon National NBCL President Washington, D.C.
Chef Don McMillan Owner, Simple Elegance Catering Winston-Salem, N.C.
Jeanine Downie, M.D. Dermatologist, Image Dermatology Montclair, N.J. Jeffrey A. Dugas Sr., M.D. Internal Medicine Specialist Rush Presbyterian Medical School and Medical Center, Chicago
Robin Ali, M.D., Pharm. D. Duke Medical Center Durham, N.C. Dr. V. Essia Barnett-Battie National Beauty Culturist’s League (NBCL) Indiana State President Sickle Cell Disease Association of America national board member
Dr. V. Essia Barnett-Battie Sickle Cell Disease Association of America National Board Member NBCL state president
Sylvia Flack, Ed.D, R.N. Dean, Health Sciences Winston-Salem State University Winston-Salem, N.C.
Delores Reynolds, owner Pearl’s Place Restaurant Chicago Edna Stewart, owner Edna’s Restaurant, Chicago Joseph Swafford, M.D. Cardiologist Associate Professor of Medicine University of Texas M.D. Anderson Center Houston, Texas Melba Swafford, M.D. Anesthesiologist Associate Professor Baylor College of Medicine Houston, Texas
Charles and Virginia Hardesty Owners Forsyth Seafood Café Winston-Salem, N.C.
Renee Bradford Owner C’est Si Bon! restaurant Chicago
Waine Kong, Ph.D. CEO, Association of Black Cardiologists Atlanta
Janet Brooks Founder
Stephen A. Martin Jr. Director, Cook County
William H. Turner, Ph.D. Vice President University Initiatives Associate Provost Multicultural Affairs University of Kentucky Lexington, Ky.
National Coordinating Center to open By Rose Walsh URBAN CALL STAFF REPORTER
The National Coordinating Center on sickle cell disease will be established thanks to the passage of the Sickle Cell Treatment Act (Senate Bill 874/House Bill 1736) signed by President George W. Bush in 2004. It was sponsored by U.S. Senators Charles Schumer of New York and Jim Talent of Missouri and by Congressman Danny Davis of Illinois. Also sponsoring the bill was Congressman Richard Burr of North Carolina, who has since been elected to the U.S. Senate. The legislation establishes a National Sickle Cell Disease Research Headquarters through the U.S. Department of Health and Human Services. The Center will coordinate research conducted by health professionals and universities to help educate patients with the goal of finding a comprehensive cure for the disease. The bill creates an additional 40 sickle cell disease treatment centers across the country under the direction of the federal Health Resources and Services Administration (HRSA). Illinois Congressman Danny Davis notes that every year in his state, 130 additional children are diagnosed
Sickle Cell Advisors Though there is no cure for sickle cell disease at present, many experts are working on ways to help those who suffer from this all too common health problem in African-American communities. Urban Call — Healthy Living Every Day! edition salutes their work: Heyward Hull, Pharm. D. H. Lynn Starr, M.D. Director of Medical Affairs Senior Vice President of Clinical McNeil Consumer & Specialty Development and Regulatory Affairs Pharmaceuticals Icagen Inc. Fort Washington, Pa. Durham, N.C. Andrew Mulberg, M.D. Senior Fellow Clinical Research McNeil Consumer & Specialty Pharmaceuticals Fort Washington, Pa.
Danny Davis P. Kay Wagoner, Ph.D. President and CEO Icagen Inc. Durham, N.C.
What is Your Sickle Cell Disease IQ 1) Sickle cell disease is something you can catch from family and friends. a. True b. False 2) If you have the sickle cell trait you also have the sickle cell disease. a. True b. False 3) There is no cure for sickle cell disease. a. True
with the disease. “This legislation will advance research, education and treatment and will help save lives and minimize the pain that people with sickle cell disease have.” Currently there are 10 sickle cell centers and clinics sponsored by the National, Heart, Lung, and Blood Institute (NHLBI), a part of the federal government’s National Institutes of Health (NIH). Two are in Pennsylvania (both in Philadelphia) and two are in California — Los Angeles and Oakland. The remaining six are in Dallas, Cincinnati, Charles Schumer Richard Burr
Fast Facts on Sickle Cell Disease
?
b. False 4) Sickle cell disease is mostly found in people of African descent. a. True b. False
5) A simple blood test will tell whether a person has sickle cell disease. a. True b. False See answers on page 6.
Photo courtesy of Child magazine
The Children’s Hospital of Philadelphia hosts one of the original sickle cell treatment centers in the U.S. It has been named the top children’s hospital in the United States by Child magazine, www.child.com.
✓ Drinking plenty of water (8–10
glasses daily for adults); avoiding extremes (too hot or too cold) in temperatures; avoiding overexertion and stress, getting plenty of rest and getting regular checkups from knowledgeable health-care providers makes for good health maintenance. ✓Hemoglobin is the main substance of the red blood cell. It helps red blood cells carry oxygen from the air in the lungs to all parts of the body. Normal red blood cells carry hemoglobin A. People with sickle cell disease have red blood cells that contain mostly hemoglobin S, an abnormal type of
Boston, New York, Chapel Hill, N.C, and Memphis, Tenn. For more information, visit the public access Web site at www.rhofed.com/sickle. In addition to clinics under the NIH banner, many hospitals around the country have comprehensive sickle cell centers staffed by community providers and communitybased organizations. These include hospitals like the Comprehensive Sickle Cell Center at Grady Health System in Atlanta. Care offered includes pain management and coping skills. More information on the location of sickle cell centers can be found at the Sickle Cell Information Center (www.scinfo.org) or on the Sickle Cell Disease Association of America Web site, www.SickleCell Disease.org.
✓
hemoglobin. Sometimes under certain conditions the hemoglobin S clumps, and this clumping is what causes the red blood cells to change shape and sickle. ✓People with sickle cell trait were more likely to survive malaria outbreaks in Africa. It is believed that the sickle cell gene evolved as a protection against malaria. ✓Pain is one of the most common symptoms of sickle cell disease. Sickle cells block the flow of oxygen-carrying blood resulting in pain episodes in the arms, legs, chest and abdomen. ✓Learn more facts like these on
sickle cell disease by visiting these resources: ❏ National Heart, Lung, and Blood Institute (www.nhlbi.nih.gov) ❏ National Library of Medicine’s MedlinePlus (www.medlineplus.gov) ❏ Sickle Cell Disease Association of America (www.SickleCellDisease.org) ❏ Wake Forest Baptist University Best Health (www.BestHealth.com) ❏ The Sickle Cell Information Center (www.scinfo.org)
URBAN CALL – Healthy Living Every Day! Edition
Words you should know Red Blood Cells: The normally round, doughnut-shaped cells in the blood which contain hemoglobin and carry oxygen to all the cells in the body. Sickle Cell Disease: A group of inherited disorders of the red blood cells including sickle cell anemia and other conditions in which one gene is for sickle hemoglobin and the other gene is also an unusual type of hemoglobin. Sickle Cell Anemia: An inherited disorder of the red blood cells in which the hemoglobin (the red oxygen carrying pigment of the cell) is different from the usual type. This unusual hemoglobin results in the production of unusually shaped cells, which do not survive the usual length of time in the blood circulation. Thus, anemia results. Sickle cell anemia is the result of the inheritance of two genes for sickle hemoglobin (S), one from each parent. Sickle Cell Trait: The inheritance of one gene for sickle cell. The person who has the sickle cell trait does not have the disease, does not have painful episodes and is generally healthy. Sickle Cell Crisis/Painful Event: A sickle cell crisis or painful event occurs when a person’s blood flow is blocked depriving parts of the body (cells, tissues, organs) of oxygen and nutrients. This results in a painful event or episode so severe that hospitalization may be required, often for days. Learn more facts like these on sickle cell disease by visiting these resources: ❏ National Institutes of Health (www.nih.gov) ❏ National Heart, Lung, and Blood Institute (www.nhlbi.nih.gov) ❏ National Library of Medicine (www.medlineplus.gov) ❏ Sickle Cell Disease Association of America (www.sicklecelldisease.org)
Sickle Cell Resource Directory Many organizations and associations are working on the problem of sickle cell disease. Maintaining overall health is key. Check out the resources below by visiting their Web site or calling for information. National Medical American Pain Foundation Association (NMA) (410) 783-7292 (202) 347-1895 www.painfoundation.org www.nmanet.org American Sickle Cell Anemia Association (216) 229-8600 www.ascaa.org Association of Black Cardiologists (678) 302-4ABC (4222) www.abcardio.org Emory University Sickle Cell Information Center (404) 727-5640 www.medweb.emory.edu National Institutes of Health National Heart, Lung, and Blood Institute (NHLBI) (301) 435-0055 www.rhofed.com/sickle National Marrow Donor Program (800) 627-7692 (612) 627-5800 www.marrow.org
National Organization for Rare Disorders (NORD) (800) 999-6673 (voice mail only) (203) 744-0100 www.rarediseases.org National Organization for Wellness of Children And Families with Sickle Cell Disease (NOW-CFSCD) (202) 387-7239 www.now-cfscd.org Sickle Cell Disease Association of America (800) 421-8453 (410) 528-1555 www.sicklecelldisease.org Sickle Cell Information Center (404) 616-3572 www.scinfo.org
Actors, athletes, artists join the fight against sickle cell disease By Blanche Carter URBAN CALL WRITER
Several well-known celebrities are lending their voices to combat sickle cell disease. Past spokesman for the Sickle Cell Disease Association of America (SCDAA) Robert Guillaume is featured in a video named after the association’s motto, Robert Guillaume “Break the Sickle Cycle.” Emmy awardwinner Guillaume is best known for playing the irreverent butler in the longrunning television comedy Benson. The late Broadway and film icon Ossie Davis appeared in an hourlong documentary, Sickle Cell Anemia ... Battling Pain, on public television. The program looked at the disease’s causes, its treatments, its effect on sufferers as well as their families Ossie Davis and the prospects for a cure. For information on the Davis video visit www. healthchoicesonline.com/sicklecell.html or call Melissa Butler, (203) 221-0888. Families bear a burden Actor Joseph C. Phillips of The Cosby Show (Lt. Martin Kendall), General Hospital (Justus Ward) and The District (Morgan Douglas) experienced the pain Joseph C. Phillips of many families whose members are afflicted by the disease. His sister died at the age of 30 after a life of repeated hospitalizations. Because Phillips knew that he carried the gene, he knew the importance of getting the sickle cell blood test. “I insisted that my wife be tested,” wrote Phillips in his weekly column, The Way I See It, which appeared in newspapers across the Larenz Tate country (www.josephcphillips.com).
Caring for the children Actor Larenz Tate and his talented brothers, Lahmard and Larron, have established a foundation in Chicago devoted to sickle cell disease awareness, research funding and the care of children. The brothers have family and friends with the disease and the trait, says the Web site www.VisitBlackChicago.com. “We want to make a difference in the lives of the children who are living with the painful disease and educate the public to test early for sickle cell anemia,” says Larenz, whose film credits include Menace II Society, Inkwell, Dead Presidents and Why Do Fools Fall in Love.
Photo courtesy of Hertz Nazaire, www.kreyol.com
Hertz Nazaire, a Haitian artist who suffers from sickle cell disease, describes his struggles in the book, The Truth About Chronic Pain — Patients and Professionals on How to Face It, Understand It, Overcome It.
Blood Donors are Needed URBAN CALL STAFF REPORT
National Football League (NFL) player Rod Smith of the Denver Broncos — the alltime leader in receptions and touchdown catches — is a spokesman for the team’s Drive For Life blood donation campaign. His daughter, Vanessa, has sickle cell disRod Smith ease and has been undergoing blood transfusions all of her life. Blood transfusions are critical in treating some children who suffer from sickle cell disease
to protect them against strokes. According to Dr. J. Paul Scott at the Children’s Hospital of Wisconsin, ”8 to 10 percent of children with sickle cell disease will likely have a stroke before the age of 10.” The best matches for these children will come from African-American donors. Since only 3 percent to 5 percent of all blood donated comes from African-Americans, this can be a problem. In the Philadelphia region, the Red Cross has a blood dona-
tion program where AfricanAmericans who want to help can give blood specifically for treating a child with sickle cell disease. Dr. Kim Smith-Whitley at Children’s Hospital of Philadelphia hopes “that enough blood donors will help to allow every child with sickle cell disease get the best care we can give them.” Retired NFL star Emmitt Smith (Dallas Cowboys), the NFL’s all-time leading rusher, has been involved with sickle cell awareness, donating time and money to the Sickle Cell Anemia Foundation.
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Association and its chapters provide support Those who have sickle cell disease and their families will find many resources at the Sickle Cell Disease Association of America (SCDAA) and at its local chapters. Dr. Willarda Edwards is president and chief operating officer of the Baltimore-based national organization. Dr. Kwaku OheneFrempong, Director of the Sickle Cell Center at the Children’s Hospital of Philadelphia, is chairman of Kwaku Ohenethe SCDAA Frempong, M.D. board. The organization provides support for the sickle cell community throughout the year with a special emphasis on September, which is Sickle Cell Awareness Month. A chapter locator and an online chat site for patients, families, friends and medical professionals who want to discuss the disease is on the association’s comprehensive Web site, www.SickleCellDisease.org. Local chapters play many roles Local chapters vary in size, membership and services. Among their many activities, these community organizations help parents whose children suffer from sickle cell disease by putting them in touch with other parents who may have suggestions and advice and who can offer emotional support. There are also support groups for young working people, teen retreats and even summer camps for children. Member organizations provide counseling and follow-up to parents of newborns diagnosed with sickle cell disease and work with caseworkers from social service agencies to reach out to patients of all ages. To find out more about local chapters near you, or if you want to start one, call the SCDAA national phone number at (800) 421-8453 or visit the Web site noted above.
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URBAN CALL – Healthy Living Every Day! Edition
Maya Angelou Center tackles health issues of African-Americans By Rose Walsh URBAN CALL STAFF REPORTER
Woods, Winfrey photos courtesy of Lou Davis/WFUHS Photography Angelou photo courtesy of Random House, Hallelujah! The Welcome Table
Dr. Kristy Woods, left, head of the Maya Angelou Research Center on Minority Health at Wake Forest University Health Sciences, poet and author Maya Angelou, and TV talk-show star Oprah Winfrey raised $127,000 for the center at the St. Peter’s Church fund-raiser in Winston-Salem, N.C.
Answers to the Sickle Cell Disease IQ Test 1. (b) False. Sickle cell disease is inherited. 2. (b) False. People who have the trait carry only one gene for sickle cell disease. They are generally healthy. Two sickle cell genes are found in those who have the actual disease. 3. (b) True. But much can be done to help. Helpful new medicines and procedures are being developed in ongoing clinical trials. Newborns are placed on penicillin to prevent infections. Childhood immunizations, especially pneumococcal vaccine, are given to decrease the severity of infections. Folic acid is given to increase red blood cells. (For more health tips see Fast Facts on Sickle Cell Disease on page 4.) 4. (b) True. Eight percent of African-Americans are affected. It is not exclusive to the black population, however. Arabs, Greeks, Italians, Latin
Learn more facts like these on sickle cell disease by visiting these resources: ❏ National Institutes of Health (www.nih.gov) ❏ National, Heart, Lung, and Blood Institute (www.nhlbi.nih.gov) ❏ National Library of Medicine (www.medlineplus.gov) ❏ Sickle Cell Disease Association of America (www.SickleCellDisease.org)
In order to better serve you, the Healthy Living Every Day! community health initiative would appreciate your help. Please take a moment to fill out this brief survey. Your answers are important to us. Complete and return survey by mail or fax:
3. Do you intend to share the information from this publication with others you feel would find it beneficial? ❏ Yes ❏ No 4. Did this publication help you to better understand what is meant by the term “clinical trial”? ❏ Yes ❏ No 5. If yes, would participation in a clinical trial related to this disease be of interest to you or someone you know who suffers from the disease? ❏ Yes ❏ No 6. Which of the following best describes your opinion about participating in clinical trials before reading this publication? ❏ I wanted to participate in a clinical trial. ❏ I would have considered participating in a clinical trial.
❏ I would never have participated in a clinical trial.
✂
7. Which of the following best describes your opinion of clinical trials now that you have read this publication? ❏ I want to participate in a clinical trial. ❏ I will consider participating in a clinical trial. ❏ I will never participate in a clinical trial. 8. Which of the following articles in this publication did you find to be most beneficial? (check all that apply) ❏ Celebrities lend their voices to the forgotten disease, page 1 ❏ Clinical trials: the search for new treatments, page 2 ❏ Fast Facts on Sickle Cell Disease, page 4 ❏ National association, local chapters provide support, page 5 ❏ Race and research, page 2 ❏ What is your Sickle Cell Disease IQ?, page 4 9. Which of the following is your primary source of information concerning sickle cell disease? (check one) ❏ My doctor
Johns Hopkins School of Medicine professors Dr. Ben Carson, left, author of Gifted Hands, and Dr. Annell Primm, director of Minority and National Affairs for the American Psychiatric Association; and John Ruffin, Ph.D., the first director of the National Center on Minority Health and Health Disparities (ncmhd.nih.gov), addressed a national conference at Winston-Salem State University on health disparities in multicultural communities.
❏ My pharmacist ❏ Friend or relative ❏ Television programs/advertising ❏ Radio programs/advertising ❏ Magazine stories/advertising ❏ Advocacy or support groups (like the Sickle Cell Disease Association of America) Please specify group _____________________________ ❏ Health Web site or sites (please specify) _______________________ ❏ This publication (Urban Call Healthy Living — Every Day!)
❏ Other publications (please specify) ________________________ 10. Which of the following is your primary source of information concerning clinical trials? (check one) ❏ My doctor ❏ My pharmacist ❏ Friend or relative ❏ Television programs/advertising ❏ Radio programs/advertising ❏ Magazine stories/advertising
❏ This publication (Urban Call Healthy Living — Every Day!) ❏ Other publications (please specify) ________________________ 11. Would you like more information about sickle cell disease? ❏ Yes ❏ No 12. Would you like more information about clinical trials? ❏ Yes ❏ No
NAME Please print clearly ___________________________ ADDRESS ___________________________ CITY ___________________________ STATE _________ ZIP ________ PHONE (include area code) ___________________________ E-MAIL ___________________________ 0305
1. How would you rate the value of the information provided in this publication in terms of adding to your understanding of sickle cell disease? ❏ Added significantly to my understanding ❏ Somewhat added to my understanding ❏ Did not add to my understanding
HEALTH DISPARITIES ARE ADDRESSED
5. (a) True. A simple blood test can be done by your doctor or sickle cell organization. This test will tell if you are a carrier of the sickle cell trait or if you have the disease.
2. Do you or someone you know suffer from sickle cell disease? ❏ Yes ❏ No
SMSi respects your privacy; this information will not be sold or traded.
(from page 4)
Americans and those from India, as well as European Americans have shown some incidence of sickle cell disease.
Let us hear from you
1) Mail to: Sickle Cell Disease Survey Segmented Marketing Services Inc. (SMSi) 4265 Brownsboro Road, Suite 225 Winston-Salem, N.C. 27106-3425 2) Fax to: (336) 759-7212
Dr. Kristy Woods, a nationally recognized authority on sickle cell disease, heads the Maya Angelou Research Center on Minority Health at Wake Forest University Health Sciences (www1.wfubmc.edu/minorityhealth). The center was established by the internationally renowned writer Maya Angelou to address the health issues of African-Americans, Hispanics and other people of color. It provides education and awareness about diseases like sickle cell disease as well as other health problems like HIV/AIDS, diabetes, hypertension, heart disease and cancer. One conference hosted at
the center was Cancer Prevention in Underrepresented Minorities: How Do We Make it Work? It highlighted breast, prostate and lung cancer prevention programs that have been successful. The center has worked with local Hispanic radio and newspapers to spread health information from Wake Forest University Baptist Medical Center physicians, staff and other community health-care professionals to North Carolina’s growing Hispanic population. Angelou is a professor of American studies at Wake Forest University in Winston-Salem, N.C. Woods taught at Meharry Medical College in Nashville, Tenn., and was director of its sickle cell center before being named the first leader of the Angelou Center.