Robin Roberts ABC News Anchor Fights Rare Blood Disorder
ABC News Anchor Fights
Disclosure Sparks Jump in Bone Marrow Donations
by Lorrie Grant
Disciplined and determined
are words that Sally-Ann
Roberts used to describe her
younger sister, Robin, when
Robin was named in 2005 a co-anchor of the ABC News program, “Good Morning America”. Sally-Ann knows
how significant those qualities are when it comes to making it in the news business because she also is the longtime news anchor at WWL-TV in New Orleans.
Seven years later, the sisters are back in the news and demonstrating how tough they are.
“Five years ago I beat breast cancer, and I’ve always been a fighter,” Robin said through tears, speaking to “Good Morning
America” viewers. “Now sometimes treatment for cancer can lead to other serious medical issues and that’s what I’m facing right now.”
She went on to say that she has a rare blood disorder, called myelodysplastic syndrome (MDS), which affects the bone marrow. A bone marrow transplant can cure MDS, and that’s where Sally-Ann comes in — she will be Robin’s donor.
“My big sister is virtually a perfect match for me,” Robin said of Sally-Ann. “And doctors tell me that is going to be a tremendous help in beating this.”
MDS is one of many bone marrow disorders marked especially by an abnormal reduction in one or more types of circulating blood cells attributable to defective growth and maturation of blood-forming cells in the bone marrow, according to Johns Hopkins University’s Sidney Kimmel Comprehensive Cancer Center.
Robin’s disorder stems from chemotherapy treatments she underwent while battling breast cancer five years ago. At high enough levels, radiation destroys a person’s bone marrow, making a transplant necessary. Stem cells are found in bone marrow, and they develop into the three types of blood cells that the body needs: red blood cells, which carry oxygen through the body; white blood cells, which fight infection; and platelets, which help the blood clot.
Robin is fortunate to have found such a close match in her sister.
Finding a match is usually the biggest challenge, particularly in the African-American community where the likelihood of matching can be as low as 66 percent compared to 93 percent for Whites, reports Be The Match, the national bone marrow donation registry that is a division of the National Marrow Donor Program. And perhaps just as daunting is that a mere 7 percent of the nation’s 10 million registered potential bone marrow donors are African Americans; Blacks make up 12 percent of the U.S. population.
Race and ethnicity matter when it comes to bone marrow donation because a donor’s and recipient’s blood tissue traits must match as closely as possible, and there’s a higher likelihood of that occurring when their ethnic backgrounds are the same.
The complexity for African Americans is that their tissue types are rarely found in donors from other ethnic backgrounds and may be unusual even among other African Americans.
“Your entire genome is inherited from your parents through generations of people,” explained Nadya Dutchin, a national account executive for Be The Match. “African-Americans’ genome gets more complicated in typing because of mixing through the generations,” she added, referring to slavery’s legacy of unraveling families.
While a patient’s immune system is less likely to be attacked by blood cells from a brother or a sister, a bigger problem is that the probability of a match among African-American siblings is only about 30 percent compared to 80 percent for Whites. Without a match, the donor’s blood cells can attack the recipient’s skin and produce rash; the lining of the gastrointestinal tract and cause diarrhea; or the liver and cause jaundice, or death.
But a new procedure called half-matched bone marrow transplant is giving more patients hope. And it’s just as it sounds – the match doesn’t have to be perfect. That alone vastly extends the donor pool for everyone.
“It used to be if there wasn’t a perfect match the risk of dying from the trans-plant itself was over 50 percent,” said Dr. Ephraim Fuchs, a bone marrow transplant expert at Johns Hopkins’ Sidney Kimmel Comprehensive Cancer Center. “We’ve figured out a way of preventing this with the drug cyclophosphamide. It’s given after the transplant and prevents the donor’s cells from attacking the patient’s immune system.”
That means successful transplants are more likely to become more frequent.
“Our results with a mismatched transplant are just as good as a matched transplant. This is becoming more common and gaining acceptance across the world,” Fuchs said.
Therefore, numerous inherited diseases, such as sickle cell anemia, have a better chance of being cured with a bone marrow transplant (also called stem cell transplantation). That’s because healthy bone marrow rejuvenates the immune system.
Transplantation also helps treat scores of other illnesses that involve bone marrow, including malignant diseases such as leukemia and lymphoma; nonmalignant diseases such as aplastic anemia; and inherited diseases such as sickle cell anemia, which disproportionately affects African Americans. Both parents carrying the trait pass on sickle cell anemia. It’s a disease that turns normal, round red blood cells into abnormally curved (sickle) shapes. Sickle-shaped blood cells are destroyed by the body faster than normal blood cells, which can result in an inadequate oxygen supply to the body, according to the Mayo Clinic’s website.
So boosting the probability for African Americans to find a bone marrow match is critical. To help the effort, Be The Match designated July as African-American Bone Marrow Awareness Month, a campaign that started four years ago.
But it has been a sluggish haul, largely owing to lack of information and fear of the donor process.
“People don’t understand the need. People don’t understand the process. People don’t know that it’s not painful,” Dutchin said.
Although the procedure is called bone marrow transplant, it is actually the blood-forming stem cells within the bone marrow that the transplant recipient needs.
“The donor has to go through with it because the patient is left without an immune system and will die,” Dutchin warned.
Once the transplant is complete, blood transfusions, antibiotics and other drugs help support patients until new bone marrow grows, usually within two to five weeks, according to John Hopkins’ Sidney Kimmel Comprehensive Cancer Center. Patients are cared for in one of the inpatient units, or as outpatients, depending on their health.
Robin Roberts is otherwise in good health. A former college basketball player at Southeastern Louisiana University, she has managed to stay fit even after her bout with breast cancer in 2007. She brought the nation along with her on that journey, chronicling the experience on “Good Morning America”, and this new ordeal has already begun to capture the hearts of viewers and well-wishers alike.
Approximately 4,000 people signed up to become a potential donors within first week of Robin’s June 11 announcement. That’s almost half of the 9,000 people who ordinarily join the Be The Match registry per month.
The registry is used when people who need a bone marrow transplant cannot find a relative who is a compatible donor. Nearly all donors chosen are between the ages of 18 and 44. (Interested donors can sign up at www.marrow.org or www.swabplusdna.org. A cotton swab test is sent to the address of a potential donor, who swabs the inside of his or her mouth and sends the test back to the registry.)
After Robin Roberts’ disclosure, first lady Michelle Obama tweeted: “Barack and I have you in our prayers. We believe in you and thank you for bringing awareness and hope to others.”
How a Bone Marrow Transplant Works
A bone marrow transplant is a procedure to replace damaged or destroyed bone marrow with healthy bone marrow stem cells. Here’s how a bone marrow transplant works:
• A donor is given a daily medication for five days prior to the procedure to stimulate production of stem cells and increase their circulation in the bloodstream. On the fifth day, the stem cells are collected by a process similar to drawing blood or by surgery.
• Drawing blood stem cells involves collecting blood from a vein in the arm and sending it through a machine that separates the blood-forming stem cells. After separation, the blood is returned to the donor through a vein in the other arm. It takes anywhere from four to six hours and as many as four sessions depending on the need. The donated stem cells are then infused into the recipient’s body and the transplanted stem cells make their way to the bone marrow cavities to begin creating new bone marrow and stem cells. This procedure is called aphaeresis.
• Surgery is used to collect blood stem cells from the pelvic bone. Generally, the doctors make up to four small incisions through the donor’s skin over the back of the pelvic bones. The incisions are less than a quarter-inch long and do not require stitches. The doctors will insert a special hollow needle through these incisions over the rear of the pelvic bone. A syringe is attached to the needle to draw out the marrow. This procedure must be done in a hospital using local or general anesthesia but it isn’t used often, according to the National Institutes of Health.
• Recipients must undergo aggressive chemotherapy treatment before a transplant. High doses of chemotherapy or radiation are given to the patient in order to destroy cancer cells or the defective bone marrow. But the recipient’s normal bone marrow and immune system are also destroyed, making it imperative that registered volunteers commit to donating.