The Start: Meeting the Donor Research Team
I first came across the topic of organ and blood shortage in the UK a couple of weeks ago. The University of Brighton Donor Research team posted about a mentored opportunity to create cartoon strips addressing barriers to conversations about blood and organ donation with loved ones, and as a current Illustration student, it felt like a meaningful cause to apply my skills towards.
Before, I only had a passing knowledge of blood and organ donation, and wasn’t particularly aware that people with Black, Asian and minority ethnic heritage are in particular demand to become donors. I knew that we could opt into being an organ donor after life, but in my circle, I hadn’t met or heard of anyone who was a donor or recipient yet.
What are the laws in UK surrounding organ donation?
To get a better understanding of the big picture, I started with some general research about the climate of blood and organ donation in the UK. There has always been a problem of shortage when it comes to organ donors, in part because families of potential donors often choose not to donate when making the decision on behalf of their loved one.
Back in 2017, NHSBT shared that 3 families a week choose not to allow organ donation because they did not know whether their loved one would have wanted to (1). In the same year, 411 people died on the transplant waiting list (2).
To address this deadly shortage, in May 2020, a new “opt-in” law for organ donation came into effect for England. This meant instead of having to register as an organ donor, people are now considered to be donors unless they opt out beforehand.
Some facts really drove home the impact of this change for me (3):
- In 2019, 3 people die on average every day in need of an organ transplant because of the shortage of suitable organs.
- Within 4 months, 135 people who had not made an organ donation decision during their lifetime became organ donors due to the new law. These accounted for 26% of all donations during that period and resulted in 341 transplanted organs
The demand for Black, Asian and minority ethnic donors
Another question I had on my mind was – why are Black, Asian and minority ethnic donors needed in particular? After some digging around, I found out on the NHSBT site that best donor match will usually come from someone with the same ethnic background, which makes it a problem when there are less donors from minority groups (4).
Coming from a Chinese background myself, I wanted to better understand the factors that prevent my community from being organ donors. A paper (5) I came across raised some points that I resonated with. It lists following common barriers to organ donation registration among Chinese and Koreans in the US:
- Lack of knowledge about organ donation
- Distrust of healthcare and allocation system
- Cultural avoidance of discussion of death related topics
- Desire for intact body mainly stemming from the Confucian concept of filial piety
The concerns about preserving the body post-death and avoiding heavier topics like death were things I encountered too in my day-to-day life. But for my immediate family and friends, there is a greater understanding of how organ donation (and blood donation) is a truly life-saving act, so they are generally supportive of it.
I think there is also a gap in awareness as to what happens when you become an organ donor. Some common misconceptions about becoming an organ donor could include concerns about not receiving as much medical attention, fear of what will be done to the body after life and so on. These are areas I hope to research more about for my next post in this series.
Working with my Mentor Sarah and the University of Brighton’s Donor Research Team
Throughout the process of learning about the topic of organ and blood donation to prepare for my comic, I was able to tap on the Donor Research’s Team and knowledge and passion for the subject. More than anything, I was moved by how the team’s own experiences in the medical field working with patients and donors inspired them to invest time and effort into this cause. This became a real driving force for working on the project, and I hope for my output to reflect the same warmth and dedication.
I also had the privilege of working with my mentor, Sarah Akinterinwa, fellow illustrator, and a New Yorker Magazine cartoonist. To see a young woman from a minority background working in an industry I aspire towards was inspiring to say the least, and I had the chance to connect with Sarah and hear first-hand about her experience through this project. On one of our first calls, Sarah encouraged me to share my culture and heritage through my comic work, because those are unique to me as an artist, and it is more important than we think to represent various experiences in the world of art. It gave me the confidence to really think about what organ and blood donation means to someone from a Chinese, Southeast Asian background like myself, and how I can speak to others from similar backgrounds through my work.
I plan to continue my research into the need for organ and blood donation in the UK, perhaps addressing some of my own questions about what happens during the actual process of organ donation itself.
Also, all this research and discussions with Sarah has sparked off several directions for the comic strip I’m working on, and hopefully, by the next post, I would be able to share some of these ideas in storyboard form.
5: Cultural Barriers to Organ Donation among Chinese and Korean Individuals in the United States: A Systematic Review (2019) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6867085/
Register your choice for organ donation
Register to become an blood donor
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