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VOL. 5 • NO. 6
© April 2011
BONE MARROW TRANSPLANT: More African American donors needed Life was good for Jennifer Jones Austin, a 42-year-old lawyer and child advocate. She had a wonderful family — a husband and two small children. She exercised daily, didn’t smoke and enjoyed only an occasional glass of wine. There was no history of cancer in her immediate family. But on one day in 2009, she began to experience cold-like symptoms. She thought she had the flu. But her fever persisted and new symptoms emerged. Her vision began to blur. Her visit to her primary care physician ended unexpectedly when she was transferred by ambulance to a local hospital. After a battery of tests her diagnosis was confirmed. She had acute myeloid leukemia, a particularly aggressive cancer of the blood and bone marrow. Within a five-day period, her life as she knew it came to a screeching halt. All was not immediately lost. The doctors bombarded her body with heavy doses of chemotherapy. It worked. The drugs drove her cancer into remission. But her doctors also knew that the victory would be short lived. Without a bone marrow transplant, her doctors said that her leukemia was sure to return, and this time the results might be less favorable. Austin took the news well. “I didn’t have too much time to be filled with worry,” she said. She admitted that she was concerned — but not for herself. “I was anxious for my
children,” she explained. “I have to plan a life for them without me.” Austin found herself outside her comfort zone of torts and depositions. Like most people, she didn’t give blood much thought — until she was diagnosed with a potentially fatal blood disorder. As if cramming for an exam, her knowledge of blood went quickly from the basics to advanced level. She learned that red blood cells carry oxygen and nutrients to every tissue in the body while white blood cells fend off infections and disease. And that platelets help the blood to clot. But as she discovered, more mysterious was the source of blood cells. Oddly enough, blood is formed in bone — bone marrow to be exact. Bone marrow is the spongy tissue found in the interior of long bones, such as the thigh or pelvis. But there’s another type of blood cell that became of particular concern to Austin, especially considering that they were the cause of her disease. Blood stem cells are immature cells that over time mature into one of the three blood cell types. Austin’s stem cells were defective and produced abnormal, or leukemia cells. Instead of preventing infections and abnormal bleeding, Austin’s did the opposite. If left unchecked, those cells could have spread outside the blood and wreaked havoc on other parts of the body. When stem cells are destroyed by a disease or treatment for a disease, they must be
WAITING FOR A MATCH
B
etter known as LJ, Lloyd Jones appears to be a typical 10-year-old kid. He wears his baseball cap backwards, prefers art to math and loves basketball. But LJ is not a typical kid. He has a rare blood disease that is almost impossible to pronounce but even more difficult to live with. In hypereosinophilic syndrome (HES) the body produces too many of a particular type of white blood cell, which can result in damage to the heart, lungs, liver and other organs. Not only is HES rare, it is basically unheard of in children, and is typically found in males over the age of 50. Finally knowing the diagnosis was a good first step for LJ’s mother, Crystal Robinson, 47. At least she now knew why her child suffered repeated bouts of pneumonia. But knowing the diagnosis was only half the battle. The cure is an entirely different matter. Because of his chemotherapy treatments, LJ’s
Jennifer Jones Austin (second from left), shown with her family, passed her first year of recovery following a stem cell transplant for leukemia. Austin received an umbilical cord blood donation. (Photo courtesy of National Marrow Donor Program)
replaced by a procedure called bone marrow — or stem cell — transplantation. Simply put, stem cells are removed from a healthy person (donor) and infused into a recipient (host). If all goes well, the donor stem cells find their way to the host’s marrow and start producing healthy blood cells. A simple enough solution, but not without drawbacks. The biggest battle is finding a suitable donor. Because of shared parentage, there’s a 30 percent chance a sibling is an ac-
ceptable match. More often than not, the donor is unrelated. That’s where the National Marrow Donor Program (NMDP) comes in. NMDP’s Be The Match Registry is the largest and most racially and ethnically diverse registry of its kind in the world. The Registry has over 9 million donors and more than 185,000 umbilical cord blood units, and facilitates more than 5,200 transplants a year. About 70 Austin, continued to page 4
A Call For Help People of color are underrepresented in the Be The Match Registry, including cord blood donation.
74% White 10% Latino 7% African American 7% Asian 1% Native American
Percentage adult donors Source: National Marrow Donor Program
Ten-year-old LJ is waiting for a match to help treat a rare disease of the blood. (Photo courtesy of live.drjays.com)
condition is relatively stable. But, according to Robinson, his doctors state that the only chance of a cure is a marrow transplant. His three siblings are not a match, so the family’s
only hope depends on a stranger. As the chief of the Stem Cell Transplantation Program at Dana-Farber Cancer Institute, Dr. Joseph H. Antin knows all too well about the life-saving procedure. Success of a marrow transplant depends on several factors. The age and condition of the recipient, the type and stage of disease and complications all have an impact. But match-
ing — how closely the donated cells match the cells being replaced — is crucial. Proteins on the surface of cells warn the immune system of unrecognized intruders. If the match is dissimilar, the immune system sets out to destroy the donated cells. That is why proteins of the donor are “typed” with proteins of the recipient to find LJ, continued to page 4
DO SOMETHING BIG
™
“Nothing is bigger than saving a life.” — Shaquille O’Neil, 4-Time NBA champion and spokesperson for Be The Match Registry
IT TAKES A LITTLE PART OF YOU TO
MAKE A PERSON WHOLE as simple as blood donation and it is important to be aware of what it entails before making the decision to register and be tested.
HOW IS IT DONE?
A donor drive at Claflin University, a historically black university in South Carolina. (Photos coutesy of National Marrow Donor Program)
Want to be a lifesaver? You needn’t sprint toward the nearest burning building or leap into raging waters. Instead, consider becoming a donor. Blood and blood products, and particularly bone marrow and organs are sorely needed by millions of children and adults dealing with life-threatening illnesses, blood loss or accidents. A great need exists for African American and other minority donors. Having a good genetic match raises the odds of success for bone marrow transplants and sometimes even helps in blood transfusions. Read on to learn why becoming a donor is so important, who can donate, how it’s done, whether it affects your health and how to sign up. BONE MARROW DONATION Bone marrow transplants can be life-saving for people with serious illnesses, such as lymphoma and leukemia. Be The Match Registry, sponsored by the National Marrow Donor Program
(NMDP), connects doctors worldwide to donors who are good genetic matches. Race and ethnicity matter here. A similar heritage produces a closer match, which is better for patients, according to the NMDP. Currently, African American, Hispanic, Latino, Asian and mixed background donors are in short supply.
A cheek swab collects material for tissue typing. If you join the National Marrow Donor Program’s Be The Match Registry, you will be provided with a cheek cell swab registration kit. You can also visit www.dana-farber.org/how/donatebone/calendar.html to find a bone marrow drive near you. If you prove to be a match, the registry will contact you. You’ll be asked to do tests for further matching, then possibly for a donation made in one of two ways: • Non-surgically Stem cells and other key blood cells are collected from circulating blood. Peripheral blood stem cell (PBSC) donors take a drug called filgrastim for five days. Then a sterile needle placed in one arm pumps blood through tubing to a machine that separates out the stem cells. The remaining blood is returned to the body through a needle in the other arm. • Surgically Liquid marrow is removed from the pelvic bone through a hollow needle. Anesthesia is used so no pain is felt during the procedure.
WHO CAN DONATE? People between 18 and 60 can register as donors. Some health problems are not a barrier: for example, well-controlled asthma, diabetes or high blood pressure; mild to moderate arthritis; and even early stage cancers of the skin, cervix, breast and bladder. Expectant parents can donate umbilical cord blood, which contains blood-forming cells used for some transplants. You can’t be a donor if donation would be too risky due to your weight, or if you’ve had certain serious ailments, such as autoimmune disorders like multiple sclerosis or lupus; AIDS or HIV; hepatitis B or C; and most cancers and forms of heart disease. Other health guidelines apply, too. Check with your doctor if you are considering donation and have questions. Registering to be a donor should not be taken lightly. If you are found to be a match — that means a patient is depending on you to follow through with your commitment. The process is not
HOW WILL IT AFFECT YOU? Your body replaces the donated cells within four to six weeks. Common side effects of filgrastim include headaches, joint or muscle aches or tiredness for several days before collection and possibly a few days afterward. Most PBSC donors recover within two weeks. Surgical bone marrow donors may have lower back soreness for a few days or more. Most recover within three weeks.
WHAT ELSE SHOULD YOU CONSIDER? Think carefully before registering and talk to family members and friends. If a match is made, the decision to donate remains your choice. However, backing out — especially at the last moment — can be health-threatening to the person who needs the marrow.
LOOKING TO DONATE? 1. First, make sure you are eligible. Check the basic registry guidelines : • Age: I am between the ages of 18 and 60. • Health: I am in overall good health and meet medical guidelines. (www.marrow.org/JOIN/Med_Guide lines_Join/index.html) • Commitment: I am willing to donate to any patient in need and I understand the donation process. For more information, see Understanding Your Commitment. (www.marrow.org/JOIN/Understand ing_Your_ Commitment/index.html) • I live in the United States or Puerto Rico: If you live outside the United States or Puerto Rico, please contact a donor center in the country where you live. (www.marrow.org/JOIN/Join_in_Person/Intl_ Donor_Centers/intl_dc_list.pl)
2. Find a local donor drive. Date: April 22 Time: 12 – 3 p.m. Location: Harvard University, Annenberg Hall, Cambridge Contact: Chris Mulcahy at cmulcah2@nmdp.org or 877-601-1926 x7723
3. If a local donor drive is not available, register by mail. Request a registration kit online at www.marrow. org/JOIN/Join_Now/join_now.html
4. For questions about donating: Call the Dana-Farber Cancer Institute at 866- 875-3324 or Be The Match Registry at 800-627-7692.
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Questions & Answers
April is National Donate Life Month
1. What are the most common reasons blacks require a bone marrow transplant? Bone marrow transplants (BMT) — now usually called stem cell transplants (SCT) — are most commonly used to treat aggressive forms of blood cancer (e.g. high-risk leukemia, lymphoma and John Koreth, M.D., Ph.D. myeloma) that are resistant Hematologist/Oncologist to chemotherapy alone. Dana-Farber Cancer Institute In this regard, all ethnicities are similarly likely to need SCT. Additionally, SCT may be used for non-cancer-related blood disorders that disproportionately affect blacks and ethnic minorities like severe sickle cell anemia or thalassemia, an inherited disorder that results in excessive destruction of red blood cells. 2. Is bone marrow transplant considered a cure? BMT (or SCT) comes in two major ‘flavors’: autologous where the patient’s own blood stem cells are collected, stored and later used in the transplant; and allogeneic where healthy donor (e.g. sibling or unrelated individual) blood stem cells are collected and used. Both types of transplants are undertaken to cure the disease or prolong length of remission. Unfortunately, some patients may relapse after the procedure. 3. Is race a factor when seeking donors for people who require a transplant? Donors do not have to be of the same ethnicity as long as they have a suitable match. However, the likelihood of finding a match is higher if the donor and the patient have a similar ethnicity. This is a particular issue for black and ethnic minority patients, as U.S. donors are primarily white. It is therefore harder to find a suitable match for minority patients. For African Americans, the availability of an unrelated donor match is only 20 percent, compared to 70 percent for whites. We therefore need more black and ethnic minority donors to join up for this lifesaving gift.
A CLOSER LOOK More than 70 percent of the time peripheral blood stem cells, which circulate in the bloodstream, are requested for donation. The process is very much like blood donation. Blood is taken from one arm and transferred to a machine which separates and retains the stem cells. The rest of the blood is returned to you in the other arm. Generally, donors are required to take a medication for five days prior to the donation to boost the stem cell population in the blood. The process itself takes about four hours and is often done for two days. Image courtesy of National Marrow Donor Program
WHEN BONE MARROW IS UNHEALTHY Bone marrow (stem cell) transplants are often recommended for conditions that result in the production of abnormal blood cells, such as the following:
CANCER
• Multiple myeloma
• Acute lymphocytic leukemia • Chronic lymphocytic leukemia • Acute myelogenous leukemia • Chronic myelogenous leukemia • Hodgkin’s lymphoma • Non-Hodgkins lymphoma
OTHERS • Sickle cell disease • Thalassemia • Aplastic anemia • Severe immune deficiency disorders
4. Can people with diabetes or high blood pressure be donors? Yes. All donors are evaluated by a health care professional to determine their suitability to donate. They have a physical exam and lab tests before being cleared to donate. According to the National Marrow Donor Program, people with controlled high blood pressure and diabetes well controlled by either diet or oral medications can donate. However, diabetics that use insulin are not allowed to register. Donation has to be safe for both donor and patient. 5. Are any risks associated with donating bone marrow? While there are risks with any medical procedure, for the vast majority of donors, there are no lasting after-effects of blood stem cell donation. 6. Is bone marrow donation a surgical procedure? Blood stem cells can be donated by means of bone marrow collection, a minor surgical procedure that requires a trip to the operating room. However, bone marrow collection occurs in only about 30 percent of the cases. Alternatively, and more commonly, the cells can be collected intravenously, much like a blood donation. 7. Does the body replace the cells lost following a donation? Yes. Within a few weeks the body rapidly replaces the blood stem cells following a donation. There have been no detectable negative effects on blood counts or bone marrow after donation. 8. Can a person donate more than once? The National Marrow Donor Program recently introduced new safety guidelines for members of its Be The Match Registry. The guidelines state that members should not donate for more than two different transplant patients. Once donors meet the maximum donation criteria, they will no longer be listed on the Registry. Some donors, however, may be re-contacted to provide white blood cells for the recipient, which are collected much like a blood donation. 9. What does it mean for a donor and recipient to be a “match?” “Match” refers to a human leukocyte antigen, or HLA match. HLA match does not mean that donor and patient are identical in all respects, such as identical twins. It does mean, however, that they share a common DNA at various points in a cell. If the donor is not a good match, the patient’s immune system tries to destroy the donated cells. 10. Do blacks have better results from umbilical cord blood donation? Umbilical cord blood is an alternative source of blood stem cells for transplants and is used when other suitable donors are not available. The advantage to cord blood is that matching can be less perfect making it a viable solution for people of color who might have difficulties finding a well matched donor. Cord blood donation poses no threat to the mother or baby.
The information presented in BE HEALTHY is for educational purposes only, and is not intended to take the place of consultation with your private physician. We recommend that you take advantage of screenings appropriate to your age, sex, and risk factors and make timely visits to your primary care physician.
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Austin, continued from page 1
drawn from one arm and separated. The stem cells are held, and the other blood cells are returned through the other arm in a procedure akin to a blood donation. “That to me was harder,” Hightower said. While her first donation lasted less than an hour, the PBSC took more than four hours. Hightower said that ignorance is the biggest obstacle to donating. People assume the process is very painful and that actual pieces of bone are removed. Neither is true. The marrow is extracted — not the bone — and the donor is under anesthesia. Most often, the donated cells are extracted directly from the bloodstream instead of the marrow. “Don’t allow ignorance to hold you back,” she advised. “What if it were your brother? Wouldn’t you want someone to help?” Hightower’s story does not have a happy ending. Her recipient, a 20-year-old male with leukemia, did not survive. Nor did her husband. A year after his transplant he succumbed to the disease. She has no regrets. “A day with your loved one cannot be measured,” she said. “We had extra days we could share.” No one needed to tell Austin about the Erma Hightower has seen stem cell transplantation from preciousness of a single both sides. She became a donor while waiting for a donor day. Once she learned of for her husband who had multiple myeloma, cancer of a her need to find a matchtype of white blood cell. (Photo courtesy of National Maring donor, Austin wasted row Donor Program) little time. Her family and friends rallied and organized one of the largest national donor drives. husband was diagnosed with multiple myIn 13 weeks the drive added 13,000 eloma, a malignant blood disorder. When she donors to the Be The Match Registry. More learned that she was not a match for her own importantly, according to Austin, 80 percent husband’s transplant, she thought, “If I can’t of the new donors were African American and help him, there’s someone else I could help.” The 45-year-old legal secretary and moth- other people of color. In February 2010, Austin found her match er of five did her part. When she was called to in donated umbilical cord blood. She endured donate after a thorough blood evaluation and a week of chemotherapy and two days of full physical examination, she said she never considered backing out. As a donor she understood body radiation to kill any lingering cancer cells better than most what she was demanding from and dampen her immune system to reduce the risk of rejection. a total stranger. “It’s a big mouthful to swalShe then spent six weeks in what she low,” she said. “It’s the unknown.” called “solitary confinement” to prevent a The doctors removed marrow from both sides of the back of her pelvis. She was stiff for chance encounter with a virus or bacteria. Even her guests wore protective suits to prevent a few days, but had no pain. contagion of any kind. About six months later she got the call Austin has recently celebrated a new again for the same person. Although the recipibirthday of sorts. She passed her first year of ent showed signs of improvement, he required recovery. She says it’s too soon to say she is another donation. completely cured. That requires four more This time they took stem cells that years of being diagnosed as cancer free. circulate in the bloodstream called peripheral She declares herself as “living without blood stem cells (PBSC). It was an outpatient, disease.” And for now, that’s good enough. non-surgical procedure during which blood is percent of the more than 10,000 patients in any given year waiting for a donor have to rely on strangers, according to the NMDP. Not just any donor will do. The NMDP notes that a patient’s likelihood of finding a donor in the Be The Match Registry depends largely on race. Blacks and Latinos have the lowest likelihood at 66 and 72 percent, respectively, compared to whites at 93 percent. This disparity has prompted the Registry’s all-out effort to register African Americans. In 2010, only 7 percent of potential adult donors were black. Erma Hightower is one such donor. Her
DANA-FARBER/HARVARD CANCER CENTER Initiative to Eliminate Cancer Disparities 2011 National Minority Cancer Awareness April 17 - April 23
April 28: 12 - 1 p.m.
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• Brighton Branch Library 40 Academy Hill Road
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April 21: 9 a.m. – 4 p.m. Reducing Cancer Disparities & Promoting Health Equity Among Socioeconomically Disadvantaged Populations Beth Israel Deaconess Medical Center Riesman Lecture Hall 330 Brookline Avenue
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A lifeline The umbilical cord is the baby’s lifeline, but once clamped and cut after the baby is born, it can be the lifeline for someone else. Cord blood — once considered medical waste — is rich in stem cells, which can be used in transplants. But time is limited. You have to complete enrollment to donate cord blood by the end of the 32nd or 34th week of pregnancy depending on the blood bank used. • Call the Be The Match Registry at 800507-5427 to find out which hospitals in your state participate. In Massachusetts, Brigham and Women’s Hospital and University of Massachusetts Memorial Medical Center take part. • If your hospital is not listed you can still donate. Contact the Carolinas Cord Blood Bank at 919-668-2071 or Lifeforce Cryobanks at 800-869-8608
There is no cost to you and no harm to you or the baby. If you don’t donate, the blood is thrown away.
that has allowed the inclusion of previously exempt candidates. At one time the age limit for a transplant the most suitable match. was 35 years old, according to Antin. Because Most recipients receive stem cell donasome of the diseases of the blood occur in tion from complete strangers taken from a older people, “We were not treating the bulk pool of donors worldwide. But this pool is of people,” he said. lacking in donors from people of color. Race With reduced intensity chemotherapy in itself does not matter. “We are pretty much the same,” said Antin. “It’s more how proteins and radiation, older people can now take part. “People in their early seventies are now being are distributed.” treated,” he said. Some groups of people are more insular Even those with reduced organ function with little influx of outsiders making them very similar. But some people — often people are now potential candidates. High dosage of color — have a lot of mixing, which makes chemotherapy — used in preparation for stem cell transplantation matching more — was not advised difficult. “There’s a for such patients. little bit of this, a little But all too bit of that,” he said. often that excluded “You can’t put a light those suffering from bulb from a Toyota debilitating blood into a Honda. It’s still disorders such as a light bulb, but the sickle cell anemia, wiring is different.” a disease that preA successful dominantly strikes transplantation can blacks and can result cure the disease and in serious organ stem cells are the key. damage. As a result “They provide for of reduced intensity the next generation transplants, the door of cells,” said Antin. is now open to a “It’s like planting possible cure for seeds to re-establish Joseph H. Antin, M.D. those with sickle normal function.” cell disease. And that would Chief, Stem Cell Transplantation Program Dana-Farber Cancer Institute There are three be a great relief to methods to donate stem cells. They can be harLJ. He seems to take his condition in stride. vested from the marrow of bone or extracted To avoid the prevalence of germs in most from the bloodstream. school settings, LJ is home-schooled as A newer option is umbilical cord blood suggested by his doctors. He does go outside donation, which poses no threat to the mother but often under the protection of a mask. His mother says that he is somewhat of a prisoner or baby. If not donated, it is thrown away. Cord blood is a good option for people of in his own house. color. “It’s a clean slate,” said Antin. The cord LJ admits there are some things that blood has no functional immunity, which are hard to take. Being in the hospital is one allows hematologists to take some liberties. of them. And the illness and medication “The match can be less perfect, but not damsometimes make him break out in a rash and cause an occasional headache. Even worse, LJ age the host,” he said. For her part, Robinson stresses the need complained, “I can’t skateboard.” for donors of color and cautions people to not LJ has become a celebrity of sorts. His believe the myths about donation. “Just do a mother’s never-ending search for a donor has little research,” she advised. She admits she brought his dilemma into the media limelight. gets a little frustrated. “If you can take the The two have pleaded his case on television, time to get a tattoo or a body piercing, you radio and at countless donor drives. So far, no can take the time to do this,” she said. “And it match has been found. is less painful.” There have been many advances in LJ is quick to chime in. “It’s not hard transplantation techniques over the year. One major improvement has been the intro- to register,” he said. “Waiting [for a donor] duction of reduced intensity transplantations is hard.” LJ, continued from page 1
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