A call for action on marrow donations

MY HUSBAND, Arthur Jones, would have turned 62 earlier this month. Unfortunately, he died in October after a nine-year war against chronic lymphocytic leukemia. The sad truth is that he didn't have to die. The potential for him to have been forever cured of the disease was right around the corner or perhaps next door.

Arthur was diagnosed with the disease in 1997 and waged a battle against it that included two stem cell transplants in 1999 and 2004. In both cases, his doctors conducted unsuccessful international searches for compatible donors.

Racially specific tissue typing characteristics are needed for a safe transplant, and the sad fact is that there is an extremely limited pool of potential matches within the black community. In fact, fewer than 10 percent of all marrow donors registered in the United States are black. Of the 3,200 successful matches made by the National Marrow Donor Program last year, fewer than 200 of them were minorities.

In my husband's case, his only recourse was to undergo a transplant using stem cells from two separate umbilical cord donors. That, in and of itself, is high risk since the use of two separate donors is uncommon and the risks are high. It was a complication known as graft-vs.-host disease, or GVHD, that ultimately led to Arthur's death.

While there is no guarantee that the outcome of Arthur's ordeal would have been different had he found a compatible adult donor, it is evident that there is an enormous need to increase the odds for other black patients confronted with similar illnesses and life-altering choices.

What is also evident is the need for more minority donors in the national registry as well as more research into the prevention and management of GVHD.

Arthur made his mark in Boston and Washington. He was a Pulitzer Prize-winning journalist who worked for the Globe, the Boston Herald, and WBZ-TV, then went on to become a spokesman for Mayor Ray Flynn, Governor Michael S. Dukakis, President Bill Clinton and, ultimately, MIT. He was admired and respected for his intelligence, integrity, quick wit, and kindness. His smile would light up a room.

It is with that memory, of an extraordinary man who dedicated his life to public service, that his family, friends, and colleagues intend to honor and remember Arthur Jones.

Work is underway to create a national education initiative to raise awareness and educate the black community about the importance and ease of blood and marrow donor registration.

Just as Arthur's legacy in life was to educate and inform the public through the media, so too will the Arthur Jones Bone Marrow Donor Initiative direct its efforts to spotlight the work of donor registration organizations and bone marrow banks across the country and to increase black participation in those programs.

It is crucial that blacks register in blood and stem cell donor banks to increase the chances for survival for other blacks confronted with not only cancer, but other life-threatening illnesses such as sickle cell anemia, multiple sclerosis, and Parkinson's disease.

"Arthur Jones is the perfect advocate for an initiative that promises substantial benefits to all of us, but particularly for the black community," says Dr. Joseph Antin, chief of stem cell transplantation at Dana-Farber/Brigham and Women's Cancer Center.

Arthur didn't live to see the first black governor of Massachusetts. He didn't live to see not one, but two black coaches in the Super Bowl. He didn't live to see the promise of a candidate like Barack Obama. He would have been so delighted.

Other black patients deserve the chance to witness these moments. We are calling on black individuals, organizations, politicians, and celebrities to help us close the gap and ensure that, in the future, blacks and other minorities have a greater chance of survival than Arthur Jones did.

Karen Anderson Jones, an interior designer, lives in Newton.