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ike many young South Asians in the Houston area, 22-year-old Megan Jacob spent a recent Saturday at Bayou Bhangra, a bhangra dance festival, competition and concert at the University of Houston. But Jacob, whose parents are from Kerala, India, differed from other attendees in one significant way—just days before the festival, she completed a round of clinical trial chemotherapy.

Jacob is suffering from Hodgkin’s disease (cancer of the lymph nodes), and her only hope for survival is a stem cell transplant with blood stem cells from a healthy donor. Despite fatigue due to the chemotherapy, Jacob attended Bayou Bhangra to help recruit people to register for the National Marrow Donor Program. But not just anyone can save Jacob—her chance of finding a match with an unrelated person ranges from as high as one in 20,000 to as low as one in 100,000.

Caucasian patients have an 80 percent chance of finding a match, but for people of other races, including South Asians, the chance drops to just 20 to 55 percent. Fewer than 0.1 percent of the South Asian population is registered.

Patients needing a bone marrow transplant are most likely to find a match with someone from their racial group, but the odds are even worse for South Asians, since so few are registered with the National Marrow Donor Program. A recent NMDP report estimates that Caucasian patients searching the donor registry have an 80 percent chance of finding a match, but for people of other races, including South Asians, the chance drops to just 20 to 55 percent. The Worldwide Bone Marrow Registry indicates that fewer than 0.1 percent of the South Asian population is registered. What’s worse, 70 percent of Caucasians who match follow through as donors, while only 30 percent of South Asians do so. And there are more than 350 medical conditions for which a bone marrow or stem cell transplant is the only remedy.

22-year-old Megan Jacob suffers from Hodgkin's disease and needs a bone marrow transplant to survive.
22-year-old Megan Jacob suffers from Hodgkin’s disease.

Are You a Match? Register!

Who can register?
– Everyone between the ages of 18-60.
– People who are anemic, underweight, pregnant, suffering from flu or allergies, have tattoos or body piercings or have visited the subcontinent may also register.
– Many people who have been turned down as blood donors may still register.
– You may not register if you have a severe medical condition, have had a heart attack, have cancer or diabetes.
– You only need to register once in your lifetime.

How do I register?
– Simply fill out a form and give a sample (around two teaspoons) of your blood.
– The easiest way is to attend a drive in your area. If you are unable to attend a drive, you may request a kit from MatchPia.org and get your blood drawn at a local clinic.

What happens if I match?
– You will get a call notifying you of the match.
– You will have to undergo a few more tests.
– If you decide to proceed, at no cost to you, less than five percent of your marrow will be removed with a needle in a brief procedure.
– You will be sore for a week or two. You will make up the missing marrow in less than three weeks.

Those are grim statistics for South Asian patients seeking bone marrow or stem cell transplants. There are currently 31 South Asian patients in the United States in need of donors. One of those of patients is 9-month-old Varun Bhaskaran (pictured above). The only child of Deepak and Ramya Bhaskaran of Manchester, New Hampshire, Varun was diagnosed with a rare primary immunodeficiency disease called Wiskott Aldrich Syndrome when he was just 5 months old. The disease impairs the patient’s immune system, and the baby’s only hope for overcoming the disease is to receive a bone marrow transplant. Varun’s maternal uncle died in 1978 due to an undiagnosed condition which doctors now believe was also Wiskott Aldrich Syndrome.

Alisha Choksi, age 4, is unable to produce normal red blood cells.
Alisha Choksi, 4, is unable to produce normal red blood cells.

The child’s parents must take special care not to expose him to other people because he is highly vulnerable to infection. They don’t take him out of the house except when he goes to Boston for his weekly check-ups, and he must drink a special formula called Neocate. Still, his parents insist that “he is a very normal baby who is caught up with TV ads these days.” His father says that “Varun loves watching the ads that come on Indian channels … Varun appears to be a Shahrukh Khan fan because we can see him smiling at the screen when Shahrukh comes on some of the ads on Zee these days. Yes, TV is bad for kids, but when Varun cannot interact with other kids, we just couldn’t stop him from enjoying watching it.”

Pia Awal's cancer relapsed after two years. She must receive a bone marrow transplant soon.
Pia Awal’s cancer relapsed after two years.
Drives of desperation

When patients are faced with such tragic situations, often friends and family members refuse to let their loved ones suffer without a fight. That’s certainly true in the case of Pia Awal, a 29-year-old teacher from New York. In 2002, Awal was diagnosed with Acute Myelogenous Leukemia, a cancer of the blood. After intensive chemotherapy, Awal’s cancer was successfully sent into remission. She resumed her normal life, and last Thanksgiving, her boyfriend Tim Dutta proposed to her in a romantic moment atop the Eiffel Tower in Paris, France. The happy couple set their wedding for October 2004, when their plans were suddenly and tragically derailed. Almost two years to the day from when Awal’s cancer went into remission, she relapsed. The relapse sent Awal into a whirlwind of chemotherapy and treatment options.

When Awal’s doctors explained that her best chance of beating the disease was a stem-cell transplant, her friends and family couldn’t sit by and wait when no match turned up. Instead, they undertook a campaign to mobilize the national South Asian community to get registered. What started as a grassroots campaign has evolved into a national effort. The team of volunteers built a web site at MatchPia.org, detailing Awal’s story, how people can organize drives and get registered. They created donor kits and pamphlets for people wanting to run drives.

“We realized if we could educate humanity on what the problem is, they’ll come up to the bar to help. There is compassion, and we’ve proven that in our community,” says Tim Dutta, Awal’s fiance. The story has garnered widespread attention, appearing on national television news shows and newspapers around the country. Since the Match Pia campaign began, the team has held 131 drives in 41 cities and has registered 7,431 individuals.

We realized if we could educate humanity on what the problem is, they’ll come up to the bar to help. There is compassion, and we’ve proven that in our community.

Jacob, who hasn’t been able to attend college because of her disease, also has a team of family and friends working to attract donors by holding drives and educating people. Since August 14, Jacob has registered 1,064 people, and the Baylor University College of Medicine, the organization supporting Jacob’s efforts, receives many calls from people who can’t attend a drive but want to register anyway.

“When I started working on the drives, I expected the support of my friends and family, but I am truly amazed at the complete strangers who go out of their way to help me. I get calls from people all over the country asking how I am doing and asking how they can get tested. I have met so many people in Houston who have become some of my biggest advocates. All of this is truly heartwarming, and it makes dealing with the disease so much easier,” says Jacob. “What is very disappointing to me, however, is that some people are completely unwilling to learn about the process. I respect a person’s decision to not become a bone marrow donor, and I definitely don’t want someone to do something that they are uncomfortable with. But if they say ‘no,’ I want it to be an informed decision. Many people refuse to help without even knowing what they are saying no to. It breaks my heart.”

Many people refuse to help without even knowing what they are saying no to. It breaks my heart.

Dr. Vijay Mehta
Dr. Vijay Mehta
Man on a mission

Dr. Vijay Mehta, a surgeon at the Veterans Administration hospital in Temple, Texas, and assistant professor of surgery at Texas A&M Medical School, is on a personal mission to make sure people are educated about the situation. In 1999, he received a phone call from the father of a 14-year-old Indian American boy who needed a bone marrow transplant. Since then, Mehta has made it his goal to get 100,000 South Asians registered to the National Marrow Donor Program.

Mehta explains that to get on the registry, potential donors just have to offer two teaspoons of their blood and fill out a form. Anyone between the ages of 18 and 60 can get on the registry, and individuals remain on the registry until they turn 60 years old. He also says that if a registered individual is a match for a patient, the marrow donation process is safer and simpler than most expect. “New techniques have made it possible to take bone marrow from the blood through the arm veins. Under general anesthesia (while you feel no pain), and at no cost to you, less than five percent of your marrow is removed with the help of a needle. No bones need to be cut. You might be sore for a week or two, and you make up that marrow in less than three weeks.”

It doesn’t matter if you are from India, Pakistan or Bangladesh. It does not matter if you are Hindu, Muslim, Christian or Jain. What matters is that we all share the same genetic pool, and we can save each other’s lives.

Harish Bhatt, an auditor with the state of Illinois, has actually experienced the simplicity of the process. After being on the registry for nine years, in 2000 Bhatt received a call from the NMDP explaining that he was a match for a 2-year-old suffering from leukemia. Bhatt jumped at the chance to save a life. In a brief outpatient procedure, doctors extracted Bhatt’s marrow. Bhatt recalls that he was able to walk a half a mile after the surgery, and he even went on vacation with his family two weeks later.

17-year-old Sarosh Khan needs a bone marrow transplant because she has Acute Aplastic Anemia, a rare condition in which the bone marrow is unable to produce blood cells normally.
17-year-old Sarosh Khan needs a bone marrow transplant.

“That day was a milestone in my life,” Bhatt says. “Service to humanity is service to God.”

Mehta features Bhatt’s story on his personal web site, which also details the stories of other victims. One story Mehta frequently repeats is that of 23-year-old University of California graduate Alisha Sheth. Sheth was diagnosed with non-Hodgkin’s lymphoma in June 2000. After several rounds of chemotherapy, doctors told Sheth in February 2001 that she needed a bone marrow transplant to survive. Between February and April of that year, volunteers working on behalf of Sheth registered 5,000 individuals in California and 4,000 in Texas. But Sheth died on April 29, 2001. On May 7, 2001, the NMDP found four matches for Sheth. Mehta repeats the story as a warning–“It takes three to six months to process the samples,” he explains. If more people get registered before tragedies strike, the lifesaving potential is enormous.

Mehta says that several factors contribute to the apathy for this issue in the South Asian community–lack of education, fear and selfishness. “I think we [South Asians] are very good people, and we will help those we consider family. But we’re selfish when it comes to going outside our borders,” says Mehta. But he is vehement about the need for all South Asians to take action. “It doesn’t matter if you are from India, Pakistan or Bangladesh. It does not matter if you are Hindu, Muslim, Christian or Jain,” says Mehta. “What matters is that we all share the same genetic pool, and we can save each other’s lives.”

Jacob admits that it hasn’t been easy sharing her story while going through such a difficult time. “It was kind of hard for me to open up so much about this. I’m a pretty private person, and the first two years I dealt with it with my family and friends, but now I’ve turned it into a national campaign to save myself and others. I want to get the message across for as many people as possible. They’re not registering for Megan Jacob. They’re getting on a national registry that can help anyone across the world.”

Her optimism for the future is inspiring: “Even once I find my match and I’m healthy and life is back to normal, I still plan on committing to this cause and working with as many people as I can. No one should have to go through this like I did.” n

Ismat Sarah Mangla encourages every South Asian to get on the bone marrow donor registry–there’s no reason not to!
Published on October 4, 2004.
Photography: Courtesy of subjects interviewed for this story.
Comments are closed.
  1. April 10, 2008, 3:26 pm Sherif Ibrahim

    Dear friend
    thank you very much , hope call you
    Dr. Sherif