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Vinay Chakravarthy, 29, had just begun his residency in orthopedics at Boston Medical Center in fall 2006 when he was diagnosed with Acute Myeloid Leukemia (AML). Vinay’s valiant fight against leukemia has touched South Asian-Americans across the country in the last few months.
Every time a member of the South Asian community is diagnosed with a form of leukemia, we are made painfully conscious for a period of time. A frenzied rush of activity ensues; bone marrow drives happen around the country at local temples and other community organizations. The numbers trickle in—some fifty here, and a hundred there.
Now, for what seems like the first time, we are asking the question we never asked before: What if it were me? From hearing Kal Penn’s pleas on Vinay’s website to reading informational stickers on containers of dosa batter, we have been confronted with the reality of leukemia and the need for bone marrow donors.
As Vinay undergoes his sixth round of chemotherapy, he is living life one day at a time, searching for the one miracle bone marrow donor who might give him a lease on life. “[Vinay’s] motto is ‘mind over matter.’ He thinks that even though he can’t control what happens to him, he can control how he feels about it,” says Vinay’s wife, Rashmi Rao, currently in her third year of medical school.
Vinay is joined by another man, 31-year-old Sameer Bhatia, a Silicon Valley entrepreneur who was also recently diagnosed with AML. Both young men got married in the last two years and dreamed of forging their paths in the world in the upcoming decades. Their battle with leukemia is being documented at www.helpvinay.org and at www.helpsameer.org.
What is needed now is not just a knee-jerk reaction to two particular patients and their specific stories. We need a colossal South Asian revolution in the United States, certainly in India, and throughout the Indian diaspora in order to tackle the urgent problem of bone marrow under-representation in our community.
A SWAB OF THE CHEEK PUTS YOU ON A LIFE-SAVING PATH
Currently, the South Asian component of the National Bone Marrow registry is incredibly small, and South Asians are dying for lack of a bone marrow match (currently placed at a 1 in 20,000 chance of a match). When Caucasians need a bone marrow transplant, their chance of finding a match is 80 percent, according to the Asian American Donor Program (AADP).
South Asians, even when pressed to register, simply do not sign up. This is in part due to indifference and, in some measure, due to ignorance. But most of all, it stems from an intrinsic fear of the actual donation process should they be determined a match.
Since her husband fell ill, Rao has learned that Indians are the last among all ethnicities to donate bone marrow, blood, and organs: “We are part of a community that will use all the resources without questioning any of it. But when asked to donate to the same pool, we seem to be the most hesitant. It doesn’t seem right, does it?” So for now, even as they face an uncertain future, Rao insists that this attitude is the one thing they would like to change most within the Indian community.
This seeming lack of generosity and commitment among South Asians has not gone unnoticed by experts who track bone marrow donation statistics. According to Dr. Galen Switzer of the University of Pittsburgh Medical Center, there is a significant difference in the “dropout” rates of people in the bone marrow registry depending on the ethnic group to which people belong. “Caucasians are much more likely to be available when the call comes,” Switzer says. “It’s about 70 percent—much higher than for an ethnic minority group in which only 50 percent of those on a registry are available to donate.”
Switzer has been working with the NMDP on a five-year study on donor unavailability, honing in on why someone who commits fast enough to register doesn’t commit deeply enough to donate when the telephone rings. His study looks at the many variables that cause members of a population to be committed donors. Often, these have to do with cultural values, religious beliefs, and close family ties where individuals are expected to also consult with the family before making such a decision.
But the recent efforts around the United States for Vinay and Sameer may radically change people’s attitudes. For one, members of the Indian-American population are now better informed. We’re beginning to realize that the registration and the marrow donation process have become simpler over the years.
Adding oneself to the registry is a quick two-step process (see details on the AADP website, www.aadp.org). According to AADP, potential registrants can attend a drive, request a home kit, or visit a local branch of the NMDP near their residence. Registrants first fill out a form giving their contact information and listing any medical conditions; this is followed by the use of a special sponge-tipped or soft brush swab used to collect tissue from inside the cheek. In ten minutes, a registrant is on the path to save a life—one day from now or twenty years from now.
A LOOK AT THE DONATION PROCESS
There are currently two ways in which the donation may happen. In both types of procedures, doctors are looking to harvest blood forming stem cells. These stem cells are already differentiated to produce blood cells in the body. The stem cells are primarily produced in the bone marrow. Traditionally, this is the site from which the stem cells have been extracted, but about eight years ago, scientists discovered that stem cells also exist in very small amounts in the blood stream. Both methods have become ways to extract the same thing: blood stem cells.
It is usually the recipient’s doctor who decides which of the two procedures is ideal for the patient. Doctors have found differences in a recipient’s outcome depending on where the stem cells come from. Some studies have shown that stem cells from Peripheral Blood Stem Cells (PBSC) have a higher incidence of Chronic Graft Versus Host disease for transplant recipients. A patient’s age, health status and disease status are carefully considered when choosing which procedure a donor will be asked to undergo. Finally, a donor’s health is also considered, and the coordinator dealing with the donor usually reports to the NMDP about any special health considerations.
PBSC donation (happens in about 70 percent of procedures) takes place at an apheresis center. Apheresis is the process to separate the different components in blood to obtain the type of cell needed. In order to increase the number of blood-forming cells, donors receive daily injections of a drug called Filgrastim for five days before the collection. The donor’s blood is then removed through a sterile needle in one arm, passed through a machine that separates out the cells used in transplantation, and the remaining blood is returned through the other arm.
The actual procedure takes about five hours in one day (a donor is given DVDs to watch during this time), or the donor may choose to donate in two collections over two days.
RISKS IN A PBSC DONATION PROCEDURE
There is minor risk of infection as with any puncture of the skin. Filgrastim has been known to cause side effects such as headaches, muscle aches, and bone aches while the donor is taking the medication. This may set in about two days into the five-day process.
During the actual procedure, some other discomforts may include the donor feeling chills from the citrate, an anti-coagulant that enables blood to flow smoothly throughout the procedure. After a donation, donors may feel fatigued and have residual side effects from the filgrastim. The day after donation, however, almost all of this medication is gone from the body and donors no longer feel the side effects.
Meet Meenu Bedi: Meenu Bedi, 33, a pharmacologist in San Ramon, got a call from the NMDP to save a life in January 2007. The call was to inform her that her tissue had matched that of a 54-year-old East Indian woman in desperate need of a bone marrow transplant.
“I didn’t even let her finish. I didn’t even think twice about donating,” Bedi says. In February, Bedi underwent a series of blood tests, a physical, and an EKG. Early in March, she was prepped at Stanford to donate through the PBSC process. Bedi has since found out that her recipient is alive and well and responding to the transplant performed in March.
Bone Marrow Donation (happens in about 30 percent of procedures) is a surgical procedure performed in a hospital. It is referred to as “surgical” because of the use of anesthesia. While the donor receives anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the donor’s pelvic bones. It is either general or local anesthesia, and the donor usually discusses this with the doctor coordinating the donation. A bandage is placed over the collection site, and no stitches are required. A donor may be asked to stay overnight to be monitored when he or she wakes up. The intent, however, is for donors to be sent home the same day.
Many donors receive a transfusion of their own previously donated blood after they give marrow. A donor’s marrow is completely replaced within four to six weeks. The actual collection procedure takes about an hour.
RISKS IN A BONE MARROW DONATION PROCEDURE
The risks here mostly come from the use of anesthesia. There are typically side effects to anesthesia after waking up. Some people may experience a sore throat, hypotension, nausea or other possible short-term side effects. Another risk may involve infection in the harvest site (as with any puncture of the skin).
Typical discomforts include possible hip, leg or back pain for several days. This decreases each day as the donor recovers. It takes four to six weeks for marrow to completely regenerate itself, but the soreness lessens around five days after the donation. Pain medication is offered to help relieve the donor from the soreness. Other discomforts may include fatigue or bleeding as with any general hospital or surgery.
For more information on bone marrow registration and donation, please go to www.marrow.org and www.aadp.org.
Meet Balaji Venkatraman: When Balaji Venkatraman, 28, an engineer at Intel Corporation, received the call from NMDP his first reaction was: “Wow, this is a once in a lifetime opportunity to make a wonderful difference in somebody’s life!”
Venkatraman knew how rare bone marrow matches were and how crucial his contribution would be to the family of the recipient, a 35-year-old South Asian dying from Aplastic Anemia. He says he never had any doubts: “Once I knew more about the details of the procedure, I wanted to talk to my family about it. But I knew they would be supportive of my decision.”
Venkatraman went in for a surgical procedure (bone marrow procedure where needles withdraw liquid marrow from pelvic bones) at Stanford Blood Center a few weeks after the first call. Six months into the procedure, the recipient succumbed to complications from an infection.
Would he undergo the stress of a few hospital trips all over again to try to save another patient?
“Definitely. If there is a match, it would be safe to do it again,” Venkatraman says.
VOLUNTEERS ON A MISSION FOR LIFE
Thanks to the unflagging efforts of an extended family of activists around the United States, the number of South Asians who have registered in the NMDP has shot up by over 15,000 people in just six weeks. People from every walk of life, every religious place of worship, various non-profit organizations, countless businesses such as theatres, restaurants, grocery stores, and companies with a substantial Indian-American headcount (from Google to Cisco to E-bay) did their bit to drum up the awareness of South Asians in the country. “I think it was because they could personally make a difference. As parents, we are all able to empathize. And youngsters are able to associate with Vinay’s and Sameer’s age group,” says Mala Umapathy of Sunnyvale, whose focus has been on organizing drives in different regions of the country.
In the San Francisco Bay Area alone, 2,285 individuals registered during the weekend of July 14-15, following large-scale publicity efforts by a core crew of passionate volunteers who put their family life on hold for several weeks to manage drives in restaurants, offices, and community centers. “We live in this country and think our loved ones are far away,” says Anuradha Sridhar of Saratoga who spearheaded the mega-drive weekend. “But you come to know that in a situation like this, it’s much more than what your relatives could do for you. There was unconditional giving from hundreds of volunteers who stood on their feet from 10AM to 9PM to encourage the crowd to register.” The Bay Area’s core team also included Usha Sundar, Girija Radhakrishnan, Radhika Padmanabhan, Geetha Swamy, Ranjani Narasimhan, Raghavan Devanathan, Sridhar Sundaram, and Umapathy.
The biggest reward for the crew was the education that happened overnight. For ten days, Sundar alternated between answering 300 emails a day from her laptop and fielding calls 24/7 on her cell phone: “When I got up on the Monday after the mega drive weekend, it was so satisfying. We’d stirred up the community. People had been educated. They were aware now.”
After all is said and done, and we go back to our jobs, our homes, our children and our hobbies, one man still waits in Boston, anxious to go back to a hospital—this time as a practicing doctor. “He’s hanging in there,” says Rao.
She is brave. From her husband, she draws the strength to take the long view: “Even if we don’t find a match for Vinay, we are both very happy to know that with over 18,000 people that we’ve had register, so many more people will benefit.”