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.
“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.”