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Ethnic Minorities Encouraged to Join Stem Cell Registry

India Post, News Report, Srirekha N. Chakravarty Posted: Aug 03, 2009

NEW YORK: In a rare instance of stem cell donation, Vivek Kumar, a 32-year-old Mountain View, California man of Indian descent, has donated his stem cells for a second transplant in one-and-half years for the same patient.

Kumar, who serves on the advisory board of the Asian American Donor Program, a 20-year-old nonprofit organization with offices in Alameda, CA, said he was happy to help though it was unusual to donate stem cells more than once.

In January 2008, Kumar initially donated his stem cells. The patient was in remission, but with the patient's cancer cells coming back, doctors were hopeful that another stem cell transplant would help save her life.

Kumar spoke to India Post from the hospital minutes before he went in for the procedure and minutes after the procedure as he drove back home.

In a concerted bid to create awareness among the South Asian community Kumar talked about the many myths surrounding marrow/stem cell donation.

The fact that he could walk in and walk out before and after the stem cell donation, dispels the myth that someone giving stem cells cannot work or engage in everyday activities, he said. "The ease of donation is another myth people don't realize. Technology is really advanced and the machine is really cool; it draws blood from one arm and puts it back in me through the other arm and it's as simply as that I am going to be saving a life, not just of the individual, but helping her entire family.

Kumar further explained that there are myths around how painful the procedure of drawing stem cells is. "It's not such a painful experience at all. People think they would need to go through anesthesia and have needles stuck in the pelvic bone to draw bone marrow. That only happens in less than 30 percent of the cases today. With technological advancements, over 70 percent cases are through the stem cell donation process."

To prepare for the donation, for five consecutive days the donor receives shots of Filgrastim. The Filgrastim boosts a person's stem cell production and moves it into the blood stream. After the five days, the donor will have three times the number of stem cells as he would normally have. Seventy percent of donations are by giving stem cell donations in this manner. It's a non-invasive process. There is no anesthesia and the donor will be completely awake.

The side effects of the Filgrastim shots are a bit flu-like, explains Kumar. "But nothing a few Tylenols cannot fix. In fact on my third day I performed an African step dance routine with my wife's dance troupe at a graduation ceremony and it involves some heavy stomping," laughs Kumar. "I have been going to work, driving and going through all the routine stuff, even now at the hospital, I am not on a stretcher."

For the donation, medical staff inserts a needle in one arm of the donor, where they draw blood. It goes through a machine, where they remove the donor stem cells. That blood is then returned through an IV in his other arm. "I feel like I'm a space man hooked up to this futuristic machine," Kumar said as he went through the procedure. "They have TV and WiFi in the room. I can work and relax."

Kumar was a volunteer for the Asian American Donor Program in 2005 and 2006. He personally scheduled some 20 marrow/stem cell drives to encourage South Asians to join the 'Be the Match Registry'. Little did he know that he would be a match and be called upon to donate for a patient in need. "Its funny how life turns out," Kumar says, commenting on this irony.

Considering there are over 2.5 million Indian Americans, there are only about 100,000 stem cell donors registered on the NMDP registry. "It's a numbers game," he says.
As part of his strategic role at the AADP, Kumar is tackling the twin challenges of recruitment and retention.

The first is to increase the number of South Asians (and all minority groups, as well as individuals of bi-racial heritage) on the Be the Match Registry. The second challenge is to educate people about how simple giving stem cells is. That way, when they are contacted and advised that they are a match, they will donate.

Kumar says he is baffled by the tendency of South Asians wherein even if they register to donate, they do not come forward when actually called upon to donate their stem cells.
"There is over a 50 percent chance that the person will say no if he is from the South Asian community if he is found to be a match for a needy patient," he says. "And that is really sad because the patient finally finds a match and the donor say 'no'.

So one of the challenges is to find out why this happens, says Kumar. "It could be because of religious reasons or family pressure where parents are not comfortable with the idea of an only son or daughter going through the process," he says.

There have been instances where the patient, upon finding a match, has traveled long distances and had to go back because the donor did not show up.

"Historically, we have seen that the South Asian community is willing to register, but not willing to donate once called as a match for a patient in need," adds Carol Gillespie, executive director of AADP. "This is troubling. Clearly more education about the need and how relatively easy it is to save a life needs to happen. That's what AADP does."

A marrow/stem cell transplant may be the only chance for patients with leukemia or other blood cancers to survive. Those who are not Caucasians are more likely to die of these illnesses.

This is because there is a shortage of multi-ethnic donors on the 'Be the Match Registry', operated by the National Marrow Donor Program (NMDP). "Only thirty percent of the time can a searching patient find a match from one of his or her siblings," Gillespie says. "The rest of the time a patient depends upon the generosity of a complete stranger. It's like finding a needle in a haystack."

Due to patient/donor confidentiality and privacy, Kumar does not know the identity of the person whose life he is potentially saving. "People ask me how I can do something like this, and I say, how can I not do something like this?" says Kumar. "How often will I get a chance to save someone's life -- probably the only time I can save or extend someone's life and give hope and happiness to a complete stranger."

To join the registry, go to www.aadp.org and go to the web page that lists drives.

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