Birmingham teenager speaks out over lack of transplants in ethnic minorities
Like most girls her age, Aneesa Hussain was living a normal life with hopes for a bright future. But at 17 her life was turned upside down when she was diagnosed with ‘aplastic anaemia’, a rare and seriously fatal bone marrow disease.
Hussain and her family frantically began looking for a bone marrow transplant, her only hope for recovery, but after a 10 month global search no matches were found. Due to Hussain’s Pakistani ethnicity the only suitable transplant could be from someone of the same background, sadly it has been revealed that very few ethnic minority transplants are available.
NHS Blood and Transplant, the group responsible for organ and tissue donations, revealed that only 36 per cent of families from black, Asian and ethnic minority (BAME) backgrounds said they would donate their organs. This is compared to 63 per cent of people from white backgrounds. Of the 1,320 deceased organ donors that year, only 74 were from BAME backgrounds, and in the past three years less than 10 per cent of families of critically ill Pakistani patients agreed to donate their relative’s organs.
“I feel disappointed and angry with my own community for not donating,” Aneesa said, whose grandparents came to Britain from Pakistan in their youth. “Helping to save someone’s life should be seen as a positive thing to do, regardless of what ethnicity you are.”
Two years before this predicament, Hussain had many goals after finishing school. After school she would take out a gap year travelling in Japan, then graduate from university and begin a career in marketing. After being diagnosed she was immediately put onto the organ donor list.
“My doctor warned me there was a shortage of ethnic minority donors,” she says. “I was surprised. I naively assumed everybody who needed a donor would find one.”
Many factors come into why statistics for ethnic minorities are so low, one of them being religion, “There are certain aspects of the Islamic faith – such as the emphasis put on the respect of the dead and not defacing the body – that suggest you shouldn’t donate,” explains Dr Sharif. He even states that although bone marrow transplants are relatively simple procedures and don’t require the death of the donor, there is still reluctance to donate.
“There are also language barriers and cultural issues, along with an element of distrust towards the NHS. The NBTA is working hard to educate and engage with these communities at grassroot level.”
Hussain was in and out of hospital for regular platelet transfusions and checkups, she recalls a white patient staying in her hospital ward who had 10 donors available, “I was happy for her but it made the fact that I couldn’t find one donor in the whole world even harder to accept.”
As searches turned up no results and with time wasting, doctors were forced to use Hussains father, Manzoor, as a donor. There were risks as his bone marrow was only a 60% match to his daughter so it could possibly be rejected. Fortunately the operation was a success and after two years of fighting Hussain returned to school. Because her match wasn’t ideal however, her health is still at risk.
The experience has spurred Aneesa to become a representative of a new Department of Health initiative designed to raise awareness of organ donation among Muslims of Pakistani origin.
“My family aren’t very religious but, in any case, surely the basis of all religions is to help others?” she asks. “Bone marrow donation is such an easy, painless procedure and a way to give someone their life back.”
For more information on this issue, please visit organdonation.nhs.uk or call 0300 1232323.