Crowdsourcing
Liyna Anwar, a journalist with origins in Hyderabad and Kerala, is undergoing chemotherapy for Acute Myeloid Leukaemia.

Just weeks after Liyna Anwar started her dream job as a senior producer with the Los Angeles Times, she received the test results from her doctor. She was diagnosed with Acute Myeloid Leukaemia (AML), an aggressive form of leukaemia, in December 2018. Although she has been undergoing chemotherapy, Liyna’s doctors said that her best chance for a cure is a blood stem cell transplant. However, Liyna and her family’s every effort to find a transplant donor match has hit a roadblock.

“So far, she has not matched with anyone in her family nor with the 19 million people on the Be The Match bone marrow donor registry in the US,” Anum Arshad, a childhood friend of Liyna, told TNM. Liyna’s best chance of finding a match is with someone of his/her own ethnic origin, and only 2% of the 19 million people registered in the USA are of South Asian descent, says Anum.

How ethnicity brought the drive to Hyderabad, Kerala

When it comes to finding a donor, a patient’s ethnic background is an important factor in predicting a match. Both Liyna’s parents are both from Hyderabad with several relatives in Kerala. “So it was a natural starting point for us,” says Rahil Haneef, a close relative of Liyna, about the ongoing drive in Hyderabad and Kochi. 

“That’s not to say we will not find a match in another state; being Indian is the largest factor in play,” he adds.

In fact, the family’s first drive for Liyna was actually in Hyderabad. They reached out to Datri, India’s bone marrow/stem cell registry that is a cooperative registry of the USA.

Datri, a non-profit organisation, has been organising registry drives for people to sign up in India, including Hyderabad and Kerala so far.  The event in Kerala had about three to four registry drives

“They have been immensely supportive and proactive in helping us host drives and spread the word. At the moment, we’re on our eighth drive for Liyna in partnership with Datri," says Rahil.

Swab to register

Liyna’s friends and families have started a campaign called ‘Swab for Liyna.’ They have been campaigning extensively across social media platforms.

“Her family and friends, who are determined to spread the word, organise registry drives and get more people, especially those of South Asian background, on the registry so that Liyna and others in need of a transplant can find their match,” Anum explains.

When people come forward to register as a donor, he or she will first have to fill a registration form and consent form, followed by a cheek swab. The cell sample is then sent to a lab to determine the Human Leukocyte Antigen (HLA) type, which is saved in the registry.

If Liyna finds a match and if the donor agrees, the process is done through peripheral blood stem cell (PBSC) donation, a non-surgical procedure to extract cells for bone marrow transplants. “Only in rare cases would the bone marrow be harvested from the hip bone,” says Seetha Lakshmi Nair, a member of Datri.

“In Peripheral Blood Stem Cell Donation, once the donor is found to be a match, he or she will receive an injection called G-CSF (Granulocyte Colony Stimulating Factor) for five days to ensure blood stem cells are released into the bloodstream from the marrow, which is inside the cavities of the bones. G-CSF is a type of growth factor, which are proteins made in the body. The collection of blood stem cells will be scheduled on the fifth day. After collection this will be transported and transplanted to the patient,” she elucidates.

In Hyderabad, 204 donors were registered across four drives. In Kerala, 720 donors have been registered across three drives.

“It’s wonderful to see so many people, many of who have never even met Liyna before, come together to do what they can to save her life – whether it’s donating, volunteering, or even sharing a picture on their social media account,” says Rahil.

Datri’s next drives for Liyna will be held on:

March 15: KPR Institute of Engineering and Technology, Coimbatore, at 9.30 am

March 31: St Antony's Girls Higher Secondary School, Vatakara, Kozhikode, between 9 am and 5 pm. This drive will also be for Niya Fathima, a five-year-old who has been diagnosed with Thalassemia Major and for Muhammed Asnan, a five-year-old diagnosed with leukaemia.