Aashim Joy, a 32-year-old Chennai man living in New York, was diagnosed with leukemia last year. His best hope now for a cure is a bone marrow transplant from a matching donor.
On March 3, Datri, a Chennai-based blood stem cell registry, will be organising a drive encouraging people to register as stem cell donors. The drive is to help Aashim and others like him to have a chance to lead a normal and healthy life, if they get matching donors. On March 4, a similar drive for Aashim will be held in Mumbai.
"Datri was set up to help people with different forms of blood cancer. When there is a blood cancer patient, they undergo chemo and radiation, but in the end most of them will still not get saved because the root of their problem has not been addressed. They have faulty stem cells. They need to undergo a procedure where their faulty stem cells are wiped out and replaced with healthy stem cells from a matched donor," explains Gayathri Shenoy of Datri.
However, the ratio of patients to donors is heavily mismatched with not many people coming forward to register. And many a times, patients waiting for donors die from the disease or from chemotherapy.
Registering is simple
- Fill in an application form and sign the consent form.
- Give a sample of your cheek swab- sterile cotton buds will be rubbed against the sides of your cheeks from the inside.
The swabs are then sent to the lab where an individual's HLA typing is determined. "Just like your blood has an RH type, stem cells have something called an HLA type which determines who you can donate to," says Gayathri.
Why Indians need a large database of stem cell donors
The probability of finding someone whose HLA type matches the patient's is from 1 in 10,000 to 1 in 100,000. What makes the situation even more complex is ethnicity- a patient is likely to find a matching donor in their own ethnicity.
"Which means," she says, "even though there are 30 million people registered across the world, for you and I, our match will be another Indian." This is why even though Aashim lives in another country, he is more likely to find a match among Indians in that country or in India itself.
And while a large number of people require stem cells, the number of people who have registered is very small, especially in India.
Gayathri says, "When a Caucasian patient is looking for a match, they will at least find five to six matches, because their database is over 10 million people. Transplant gets done on time, prognosis is better and most of them recover and lead healthy, mainstream lives. But for an Indian patient, no matter where he is, a lot of time they succumb to their disease or chemotherapy even as they wait for donors. The only solution for Indians is for us to have a large enough registry."
How does donation work
On registering, an individual's information is stored in Datri's database till they are 55. If the person is found to be a match at any point, they will be contacted.
The donor is first put through a health check up to ensure they are completely healthy.
There are two ways to donate. One is bone marrow transplant, where stem cells are taken from your hip bone. The other one, called peripheral blood stem cell transplant, is less invasive. In this procedure, a doctor injects the donor with a booster injection which increases the stem cell count in the body. For the next four days, the donor can go about their life as usual post the shot, except drinking and smoking are prohibited. On the fifth day, the donor donates stem cells just like platelets are donated for a dengue patient. It is usually done in the blood bank of a hospital and takes about three to four hours after which the person can go back to work.
"In a blood donation, your body has to make up for the lost blood and regenerate it. In this case, the injections that you take already increase your count. So when you donate, you are not losing something," Gayathri says.
Stem cell donation can help not only people with leukemia and lymphoma, but can also help in the treatment of over 100 different kinds of blood disorders, including thalassaemia and wiskott.
Datri has over 3 lakh registered donors across India, which they say is not enough. They will also be conducting a drive in Mumbai on March 10 and 11 looking for registrations from the Zoroastrian community.