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 ex-perience cold-like symptoms. She thought she had the fl u. But her fever persisted and new symptoms emerged. Her vision began to blur.

Her visit to her primary care physi-cian ended unexpectedly when she was transferred by ambulance to a local hospital. After a battery of tests her diagnosis was confi rmed. She had acute myeloid leukemia, a particularly aggressive cancer of the blood and bone marrow.

Within a fi ve-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 vic-tory 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 fi lled 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 infec-tions 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 dis-ease or treatment for a disease, they must be

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 fi nd their way to the host’s marrow and start producing healthy blood cells.

A simple enough solution, but not with-out drawbacks. The biggest battle is fi nding 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

Jennifer Jones Austin (second from left), shown with her family, passed her fi rst year of recovery following a stem cell transplant for leukemia. Austin received an umbili-cal cord blood donation. (Photo courtesy of National Marrow Donor Program)

BE Healthy™

Austin, continued to page 4

VOL. 5 • NO. 6 © April 2011

Sponsored byBoston Public Health Commission

Better 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 pro-nounce but even more diffi cult 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 fi rst step for LJ’s mother, Crystal Rob-inson, 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

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 Trans-

plantation 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 intrud-ers. 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 fi nd

WAITING FOR A MATCH

Ten-year-old LJ is waiting for a match to help treat a rare disease of the blood. (Photo courtesy of live.drjays.com)

LJ, continued to page 4

74% White

10% Latino

7% African American

7% Asian

1% Native American

Percentage adult donors

Source: National Marrow Donor Program

A Call For HelpPeople of color are underrepresented in the Be The Match Registry, including cord blood donation.

DO SOMETHING BIG™

“Nothing is bigger than saving a life.” — Shaquille O’Neil, 4-Time NBA champion and spokespersonfor Be The Match Registry

BONE MARROW TRANSPLANT: More African American donors needed

(NMDP), connects doctors worldwide to donors who are good genetic matches. Race and ethnicity matter here. A similar heri-tage produces a closer match, which is better for patients, accord-ing to the NMDP. Currently, African American, Hispanic, Latino, Asian and mixed background donors are in short supply.

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 dis-ease. 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

Want to be a lifesaver?You needn’t sprint toward the nearest burning build-

ing or leap into raging waters. Instead, consider becom-ing 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 some-times even helps in blood transfusions.

Read on to learn why becoming a donor is so impor-tant, 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

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 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 fi nd 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-surgicallyStem cells and other key blood cells are collected from

circulating blood. Peripheral blood stem cell (PBSC) donors take a drug called fi lgrastim for fi ve 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.

HOW WILL IT AFFECT YOU?Your body replaces the donated cells within four to six

weeks. Common side effects of fi lgrastim 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.

IT TAKES A LITTLE PART OF YOU TO

MAKE A PERSON WHOLE

A donor drive at Clafl in University, a historically black university in South Carolina. (Photos coutesy of National Marrow Donor Program)

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 22Time: 12 – 3 p.m.Location: Harvard University, Annenberg Hall,CambridgeContact: Chris Mulcahy at cmulcah2@nmdp.orgor 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 at866- 875-3324 or Be The Match Registry at800-627-7692.

BE Healthy • http://behealthy.baystatebanner.com2

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 myeloma) that are resistant to chemotherapy alone. In this regard, all ethnici-ties 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 ‘fl avors’: 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 trans-plants 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 fi nding 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 fi nd 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.

4. Can people with diabetes or high blood pressure be donors?Yes. All donors are evaluated by a health care professional to deter-

mine 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 major-

ity 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. How-ever, 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-contact-ed 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 com-mon 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 vi-able solution for people of color who might have diffi culties fi nding a well matched donor. Cord blood donation poses no threat to the mother or baby.

John Koreth, M.D., Ph.D.Hematologist/OncologistDana-Farber Cancer Institute

Questions & Answers

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.

A CLOSER LOOKMore 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 fi ve days prior to the donation to boost the stem cell population in the blood. The process it-self takes about four hours and is often done for two days.

Bone marrow (stem cell) transplants are often recommended for conditions that result in the production of abnormal blood cells, such as the following:

WHEN BONE MARROW IS UNHEALTHY

Image courtesy of National Marrow Donor Program

CANCER• Acute lymphocytic leukemia• Chronic lymphocytic leukemia• Acute myelogenous leukemia• Chronic myelogenous leukemia• Hodgkin’s lymphoma• Non-Hodgkins lymphoma

• Multiple myeloma

OTHERS• Sickle cell disease• Thalassemia• Aplastic anemia• Severe immune defi ciency disorders

April is National Donate Life Month

BE Healthy • http://behealthy.baystatebanner.com 3

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 fi nding a donor in the Be The Match Registry depends largely on race. Blacks and Latinos have the lowest likelihood at 66 and 72 percent, respec-tively, 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

husband was diagnosed with multiple my-eloma, a malignant blood disorder. When she learned that she was not a match for her own husband’s transplant, she thought, “If I can’t help him, there’s someone else I could help.”

The 45-year-old legal secretary and moth-er of fi ve did her part. When she was called to donate after a thorough blood evaluation and physical examination, she said she never con-sidered backing out. As a donor she understood better than most what she was demanding from a total stranger. “It’s a big mouthful to swal-low,” she said. “It’s the unknown.”

The doctors removed marrow from both sides of the back of her pelvis. She was stiff for a few days, but had no pain.

About six months later she got the call again for the same person. Although the recipi-ent showed signs of improvement, he required another donation.

This time they took stem cells that circulate in the bloodstream called peripheral blood stem cells (PBSC). It was an outpatient, non-surgical procedure during which blood is

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 fi rst donation lasted less than an hour, the PBSC took more than four hours.

Hightower said that ignorance is the big-gest 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 igno-rance 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 preciousness of a single day. Once she learned of her need to fi nd a match-ing donor, Austin wasted little time. Her family and friends rallied and orga-

nized one of the largest national donor drives. In 13 weeks the drive added 13,000

donors to the Be The Match Registry. More importantly, according to Austin, 80 percent of the new donors were African American and other people of color.

In February 2010, Austin found her match in donated umbilical cord blood. She endured a week of chemotherapy and two days of full body radiation to kill any lingering cancer cells and dampen her immune system to reduce the risk of rejection.

She then spent six weeks in what she called “solitary confi nement” to prevent a chance encounter with a virus or bacteria. Even her guests wore protective suits to prevent contagion of any kind.

Austin has recently celebrated a new birthday of sorts. She passed her fi rst year of recovery. She says it’s too soon to say she is completely cured. That requires four more years of being diagnosed as cancer free.

She declares herself as “living without disease.” And for now, that’s good enough.

Austin, continued from page 1

A lifeline

the most suitable match.Most recipients receive stem cell dona-

tion from complete strangers taken from a pool of donors worldwide. But this pool is lacking in donors from people of color. Race in itself does not matter. “We are pretty much the same,” said Antin. “It’s more how proteins are distributed.”

Some groups of people are more insular with little infl ux of outsiders making them very similar. But some people — often people of color — have a lot of mixing, which makes matching more diffi cult. “There’s a little bit of this, a little bit of that,” he said. “You can’t put a light bulb from a Toyota into a Honda. It’s still a light bulb, but the wiring is different.”

A successful transplantation can cure the disease and stem cells are the key. “They provide for the next generation of cells,” said Antin. “It’s like planting seeds to re-establish normal function.”

And that would be a great relief to LJ. He seems to take his condition in stride. To avoid the prevalence of germs in most school settings, LJ is home-schooled as suggested by his doctors. He does go outside but often under the protection of a mask. His mother says that he is somewhat of a prisoner in his own house.

LJ admits there are some things that are hard to take. Being in the hospital is one of them. And the illness and medication sometimes make him break out in a rash and cause an occasional headache. Even worse, LJ complained, “I can’t skateboard.”

LJ has become a celebrity of sorts. His mother’s never-ending search for a donor has brought his dilemma into the media limelight. The two have pleaded his case on television, radio and at countless donor drives. So far, no match has been found.

There have been many advances in transplantation techniques over the year. One major improvement has been the intro-duction of reduced intensity transplantations

that has allowed the inclusion of previously exempt candidates.

At one time the age limit for a transplant was 35 years old, according to Antin. Because some of the diseases of the blood occur in older people, “We were not treating the bulk of people,” he said.

With reduced intensity chemotherapy and radiation, older people can now take part. “People in their early seventies are now being treated,” he said.

Even those with reduced organ function are now potential candidates. High dosage chemotherapy — used in preparation for stem

cell transplantation — was not advised for such patients.

But all too often that excluded those suffering from debilitating blood disorders such as sickle cell anemia, a disease that pre-dominantly strikes blacks and can result in serious organ damage. As a result of reduced intensity transplants, the door is now open to a possible cure for those with sickle cell disease.

There are three methods to donate stem cells. They can be har-vested from the marrow of bone or extracted from the bloodstream.

A newer option is umbilical cord blood donation, which poses no threat to the mother or baby. If not donated, it is thrown away. Cord blood is a good option for people of color. “It’s a clean slate,” said Antin. The cord blood has no functional immunity, which allows hematologists to take some liberties. “The match can be less perfect, but not dam-age the host,” he said.

For her part, Robinson stresses the need for donors of color and cautions people to not believe the myths about donation. “Just do a little research,” she advised. She admits she gets a little frustrated. “If you can take the time to get a tattoo or a body piercing, you can take the time to do this,” she said. “And it is less painful.”

LJ is quick to chime in. “It’s not hard to register,” he said. “Waiting [for a donor] is hard.”

LJ, continued from page 1

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 800-507-5427 to fi nd 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 Cryo-banks 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.

Comments on Be Healthy? Contact Health Editor Karen Miller at kmiller@bannerpub.com.

Erma Hightower has seen stem cell transplantation from both sides. She became a donor while waiting for a donor for her husband who had multiple myeloma, cancer of a type of white blood cell. (Photo courtesy of National Mar-row Donor Program)

Joseph H. Antin, M.D.Chief, Stem Cell Transplantation ProgramDana-Farber Cancer Institute

BE Healthy • http://behealthy.baystatebanner.com4

April 17 - April 23Boston Public Library Cancer Awareness Display • Codman Square Branch Library 690 Washington Street

• Mattapan Branch Library1350 Blue Hill Avenue

• Brighton Branch Library40 Academy Hill Road

April 28: 12 - 1 p.m.Secondhand Smoke Exposure Harvard Street Neighborhood Health Center632 Blue Hill Avenue

May 16: 11 a.m. - 1 p.m.Skin Cancer PreventionRoxbury YMCA285 Martin Luther King Boulevard

DANA-FARBER/HARVARD CANCER CENTERInitiative to Eliminate Cancer Disparities

2011 National Minority Cancer Awareness

April 21: 9 a.m. – 4 p.m.Reducing Cancer Disparities & Promoting Health Equity Among Socioeconomically Disadvantaged PopulationsBeth Israel Deaconess Medical CenterRiesman Lecture Hall330 Brookline Avenue

Registration is required: http://sesrcdbostonapril2011.eventbrite.com

All events are open to the publicFor any additional information contact Athene Wilson Glover at 617-632-4860