Tag Archives: registry

Ethnicity Matters to Stem Cell Recipients

Indians are dying unnecessarily from blood cancers. There is a shortage of Indians available on the national registry to assist fellow Indians who have been diagnosed with leukemia, lymphoma, and other blood cancers. What’s the solution? To encourage more Indians/South Asians to register as potential stem cell donors.

“Registering is easy,” says Dinesh Chandrasekhar, who along with his wife, registered at the Hindu temple in Livermore, CA. “It only takes about 5 minutes. You can complete the online registration and a swab kit will be mailed to you. When you receive the kit, swab the inside of your cheek and pop the kit in the mail. Postage is pre-paid and you don’t have to leave your home. And, the testing is free.”

Dinesh serves as an ambassador for the Asian American Donor Program (AADP), a 30-year-old nonprofit organization in Alameda, CA that works to educate Indians and other ethnically diverse people about the importance of registering as potential stem cell donors. In the past year, AADP has worked with 10 Indian patients in need.

Joining the Be The Match® registry means volunteering to be listed as a potential blood stem cell donor, ready to save the life of any patient anywhere in the world who is in need of a transplant.

“With the coronavirus pandemic and the need for six-foot distancing, we have canceled our in-person community registration events,” says Carol Gillespie, AADP’s executive director. “So, our community education and awareness efforts, which generate new donors, are suffering and blood cancer patients are worried.”

The coronavirus has had a dismal impact on patients diagnosed with blood cancers like leukemia and lymphoma, and other illnesses treatable by a stem cell transplant. Blood cancer patients are afraid that a life-saving donor will not be found in time. They are scared that if a matching donor is found, that person, because of COVID-19, will not want to go to a clinic to have their stem cells collected.

Locating a stem cell donor and having a stem cell transplant is an example of a health care disparity. For people of color, there is a shortage of donors on the Be The Match® national registry. Patients of South Asian/Indian heritage face challenges, as the population is severely under-represented as donors.

At any given time, there are 12,000 people looking for a matching stem cell donor to help save their life. Patients are from all walks of life and are from numerous racial and ethnic groups.

Dinesh Chandrasekhar’s Story

Dinesh and his wife registered with the AADP as potential stem cell donors. Then, in the fall of 2014, Dinesh was notified that he was a match for a patient. 

“I got very excited about the opportunity of being able to help someone in need, but at the same time, I suddenly got apprehensive about the process,” Dinesh says. “But, after talking with an amazing person at Be The Match®, I was completely clear about what I was expected to do. After that, I had no fear.”

Dinesh liked that the stem cell donation process was simple and convenient for him, the donor. And, there were no expenses for him.

When lab work found that Dinesh had high blood pressure, the transplant procedure was called off.“I was never more disappointed in my life,” he says. “It was a huge shock that I could not donate.

In January 2015, Dinesh was notified again that he was a match for a patient in need. He was asked how his blood pressure was and he said he and his doctor worked on it and it was now normal. In April of 2015, Dinesh donated his peripheral blood stem cells.

Dinesh donating stem cells.

“It ended up that I donated for the same patient. And, interestingly, we are both the same age. It was like destiny,” Dinesh says.

The process at Stanford Hospital took a little more than four hours. Dinesh’s blood was taken out of Dinesh’s arm and then cycled through a machine that separates the stem cells from the other blood cells. The stem cells are kept in a separate bag, while the rest of the blood is returned to the donor. During this time, Dinesh watched TV shows.

“I was mind blown about the science behind this and that this (his stem cells) would produce immunity in another person who was compatible with my stem cells,” Dinesh says.

“Giving your stem cells is not like you are donating a part of your body (kidney, liver, etc.),” Dinesh says. 

Before going to a clinic or hospital, donors are given shots that stimulate white blood cell production. “This production moves blood stem cells from the marrow into the bloodstream so that the stem cells can be collected from the donor,” says Gillespie.  “So you are missing nothing.”

Upon returning home, Dinesh ate lunch and slept for about three hours. “The next morning I felt normal and went back to work,” he says. “I would do it again.”

After six months, Dinesh was told that his recipient was doing well and back to their normal life.

“Registering and, then, donating my stem cells was fulfilling,” Dinesh says. “As human beings, we are here to help each other.”


Join the registry by texting AADP to 61474 or visit AADP. Visit AADP’s Instagram page for upcoming Live Interviews. AADP also hosts special events.

Mahesh’s Life in the Balance


Alameda, CA –  Mahesh, a 68-year-old man, is a loving husband and father of two. In May 2019, he was diagnosed with Acute Myeloid Leukemia (a type of blood cancer), the day after celebrating his son’s marriage. A stem cell transplant is Mahesh’s only chance of beating this disease. Before a transplant takes place, a matching stem cell donor must be found.

Mahesh has spent four months in the hospital and his need for a match is urgent. Initially, five matches were found on the registry in India. But, these donors declined to move forward or were ineligible to donate their stem cells. No donor has been found on the Be The Match® national registry.

Matching is based on your human leukocyte antigen (HLA) tissue type. Your HLA is part of what makes you ‘you’ – your individual genetic characteristics. So, HLA matches are closely based upon a patient’s ethnicity.

Mahesh is South Asian/Indian. So, his perfect stem cell match will most likely be someone who is Indian or someone with Indian ancestry. You have a 30 percent chance of being a match with a sibling. But, Mahesh’s siblings are not the best match for him.

Mahesh family is from Central/Eastern India. His parents hail from Orissa. Today South Asians make up one percent of the bone marrow registry.

“My father’s health is rapidly declining and he needs a stem cell match right away,” says Amrut, Mahesh’s son. “If you are South Asian/Indian then signing up might save our Dad’s life or, if you are not a match for him, you might also save the life of another South Asian looking for a match. We need your help!”

More about Mahesh

Mahesh is a father, a husband, and a friend. He is also a leukemia patient. His heritage, Indian American, is preventing him from finding a matching donor because there aren’t enough Indians registered as potential donors.

Mahesh with his family

“I am completely dependent upon the registry to find a match, as my leukemia is aggressive,” Mahesh says. “There are zero matches for me. Being of Indian-American heritage, the population is severely under-represented as donors. If you have just five minutes, I ask you to register.”

Join the registry by texting MAHESH to 61474

What’s the Solution?

People of color are more likely to die of leukemia and other blood cancers because there is a shortage of diverse HLA types on the Be The Match® national registry. It is vital to build a more diverse registry so everyone has an equal opportunity to survive blood cancers.

Encouraging more people of ethnically diverse backgrounds and those of mixed heritage to be committed and join the Registry, potentially saving a life.  Each of us can “Be The One to Save a Life!”

The Asian American Donor Program (AADP, www.aadp.org) is a 30-year-old community based nonprofit 501 (c) 3 organization, based in Alameda, CA, that works to educate community members about marrow donation and the importance of joining the Be The Match® national registry. It is the oldest nonprofit of its kind in the country. AADP staff is dedicated to increasing the availability of potential stem cell donors for patients with life threatening diseases curable by a blood stem cell or marrow transplant. AADP is an official recruitment center for Be The Match®.

“For thousands of severely ill blood cancer patients, there is a cure,” says Carol Gillespie, AADP executive director. “You could be the cure. Those whose marrow/stem cells are not a match for a patient in need now may be a match for someone else down the road, anywhere in the world. I encourage all individuals to commit to registering. It is simple to register – just a swab of the inside of your cheek.”

When a marrow match is not readily available, patients have to wait longer than is ideal to find a match. Once a match has been found, their disease may have progressed to the point that they are no longer eligible for a transplant.

Importance of Diversifying the Registry

In 2019, an estimated combined total of 176,200 people in the US were expected to be diagnosed with leukemia, lymphoma or myeloma. New cases of leukemia, lymphoma and myeloma were expected to account for 10 percent of the estimated 1,762,450 new cancer cases diagnosed in the US in 2019. (From: https://www.lls.org/facts-and-statistics/facts-and-statistics-overview/facts-and-statistics

The Be The Match® registry recruits hundreds of thousands of donors each year through an extensive network of about 100 local and regional Community Engagement Representatives and organizations. You only need to join the Be The Match® registry once.

Marrow/stem cell matches are very different than blood type matches.  Just as we inherit our eyes, hair, and skin color, we inherit our marrow and stem cell tissue type.

How You Can Commit to Help

Or, text MAHESH to 61474

  • You must be 18 to 44 years old and meet general health requirements.
  • Complete the online consent form and a swab kit will be mailed to you.
  • Be committed. Be ready to donate to any patient in need.
  • Other ways to help – call AADP at 1-800-593-6667 or visit our website http://www.aadp.org

Please take a few minutes of your time to learn more about how you can help save a life and register as a marrow donor.