As an independent animation and documentary filmmaker who works in traditional and computer-based techniques, Jeff Chiba Stearns is already well-known in the arts community. His latest film, Mixed Match, is an important human story told from the perspective of mixed race blood cancer patients who are forced to reflect on their multiracial identities and complex genetics as they struggle with a nearly impossible search to find bone marrow donors, all while exploring what role race plays in medicine. Mixed Matched will be premiering at the Vancouver International Film Festival (VIFF), and will also be in Vancouver Asian Film Festival and Reel Asian Film Fest in November this year. We interviewed Jeff and wanted to learn more about his upcoming film and his journey as a filmmaker.
Unlike your previous films, Mixed Match is much more serious in tone. This documentary is about how multiethnic patients suffering from blood cancers and other blood diseases struggle to find a stem cell or bone marrow donor match. How did you come upon this topic and why did you decide to do a film on it?
In the summer of 2007, I was asked by a friend who had survived cancer to join the national bone marrow registry in Canada, with the hope that I could be a potential match for a young multiethnic man battling leukemia from Vancouver. The man’s heritage was a mix of Chinese and European descent. My friend explained that because I am part Japanese and part Caucasian there could be a chance that I could be a match and potentially save this patient’s life. At the time my excuses for not joining the registry were sentiments shared by many others I’ve spoken with lately; I didn’t know how to join the registry, I was too busy, I thought it was really painful, and I didn’t understand why ethnicity mattered.
Then fast forward to 2010, I was contacted by Athena Asklipiadis, founder of Mixed Marrow, the only group in North America that specifically recruits multiethnic people to sign up to the bone marrow registries. After speaking to Athena, I had no idea about the challenges that multiethnic patients with rare blood diseases faced when trying to find a bone marrow transplant. What Athena told me was shocking, that finding a stem cell match for a multiethnic patient has been compared to finding a needle in a haystack, with one in a million odds.
For these patients, siblings only hold about a one in four chance of being a match and so most blood cancer patients have to look outside their families for a match. I realized that with multiethnic people becoming one of the fastest growing demographics in North America this was a topic few people knew about but a topic everyone should know about. So Athena and I teamed up and hit the road to capture the many stories we would use to create Mixed Match.
There are some amazing stories in this film. What is one in particular that you can speak about that particularly touched you?
Every patients we filmed with left a lasting impression on me and it meant so much to have such personal access to their lives. Although, one of my favourite stories in the film is when we filmed our subject, Alexandria Taylor, moments after waking up from her bone marrow harvest operation. Alexandria had just donated her bone marrow to an anonymous stranger, a little girl somewhere in the US. Going into the operation, Alexandria was strangely excited and giddy because she knew the potential that she could be helping save this little girl’s life. After Alexandria wakes up from her operation, her entire family goes in to see how’s she’s doing.
Alexandria who is probably still a bit woozy from coming out of the operation just starts cracking jokes with her boyfriend and father. At one point she even starts twerking when she gets up out of the bed for the first time. Considering they had just drawn a few pints of bone marrow out of her hip, which can be a painful process, it’s amazing she could even get up, let alone start dancing. I really cherish these lighthearted moments after Alexandria’s operation because it helps bring a little humour into a film that is quite heavy at times. I was really touched by Alexandria’s willingness to help someone she had never met or may never meet. After seeing how excited and happy Alexandria was after donating bone marrow to this little girl, a complete stranger, it really helped put things in perspective for me.
Race and medicine have always had an uneasy tension, particularly when it comes to defining ethnicity, from the days of eugenics to more recent assertions that race is biologically meaningless. But Mixed Match is told from the perspective of mixed race blood cancer patients who are forced to reflect on their multiracial identities and complex genetics as they struggle with a seemingly impossible search to find bone marrow donors. What can we learn from the film when it comes to race and medicine?
What it really boils down to is how the language of race is used in medicine. We can’t deny the fact that we all have unique ancestries that stretch back to the dawn of humankind. When it comes to stem cell transplants, doctors and registries need to know which box to start looking in to find a suitable match for a patient. Knowing the ancestry of a patient helps these doctors and registries know where to begin looking to find a match. Therefore, anytime you involve the separation of people into categories, you’re going to stir up some controversy among scholars and racial sceptics.
It’s a know fact that the most suitable matches for people come from someone who shares similar genetics. That usually means someone who has a similar ethnic or cultural background. You’re trying to find your genetic twin in the world. The topic of race being used in medicine became controversial when pharmaceutical companies start targeting certain drugs to specific racial or ethnic group. For example when the heart drug BiDil was targeted specifically to African-Americans. The same thing goes for when doctors say that particular ethnic groups are more susceptible to certain diseases because of their race. For example how sickle cell anemia is more common in people of African descent. At a time when we are all fighting for equal rights and social justice, people don’t want to be divided up into boxes, especially when it comes to medicine.
In terms of stem cell transplants, identifying people by ethnic or racial backgrounds is what people understand when they’re filling out a form asking for this type of information. It’s tricky because a lot of people do not really understand the differences between race, ethnicity and nationality when it comes to filling out these forms. In America, Be the Match still use multiracial and race on their forms. In Canada, OneMatch uses multiethnic or ethnicity on their forms. Although, being multiethnic doesn’t mean you’re multiracial.
We interviewed some researchers at Be the Match in the US (the worlds largest stem cell registry of over 11 million potential donors) and they are working on ways to better identify suitable matches without needing to know as much family history or a person’s ethnic or racial background. Frankly, there are a lot of people who just don’t really know where their origins are from or they might think they are something they are not. Therefore, self identified race and ethnicity is not always accurate which is why I think using race and ethnicity in medicine can be seen as controversial. Especially if people are being classified into boxes they actually don’t belong.
As a filmmaker, you’re trying to tell a story. But this film is also one where you discovered new facts and developments in this area of medicine. After making this film, did you find that it changed or reframed some of your understanding ethnicity, identity and race?
You really can’t make a film like this without having to explore some of the issues surrounding race and ethnicity or advancements in medicine. Although, I didn’t want to go too much into the new advancements in technology or it would date the film very quickly. We still explored how umbilical cord stem cells are being used much more widely now for transplants because this is where stem cell transplantation is heading. Although, when we started the film in 2011, it was still relatively new science. It’s amazing how fast things progress in the medical world.
You can’t deny the popularity of DNA genetic testing kits like 23andMe are or Ancestry.com are. It seems like everyone wants to discover a little hidden secret behind their family’s ancestry. When they did a search to find my perfect match in the worldwide stem cell registry, only one real suitable match came up and this person was from Korea. They couldn’t tell me if this person was Korean but just that they registered to the Korean stem cell registry. It made me question my own Japanese ancestry for a second. Maybe my family was really Korean and not Japanese as we all thought? Although, I recently read that Japanese descended from Koreans, which is why the Korean and Japanese stem cell registries work together a lot. I really believe that nobody really knows their true origins which is why I find this topic so fascinating.
What do you hope audiences get out of this film?
Of course we want audiences to feel compelled to take the call to action and join a national bone marrow registry or donate their baby’s umbilical cord blood if the option is available. For some people who are over the age limit to donate bone marrow, we hope they will encourage their kids to join or maybe organize a drive of their own to recruit more people. I learned that some parents of particular ethnic minority groups will try to talk their kids out of donating due to cultural beliefs or stigmas they may have towards donating stem cells or bone marrow. With Mixed Match, we really hope we can change some of these parents’ perceptions and clear up any misconceptions they may have. At the very least, we hope to educate and engage people in a discussion on this topic and share the stories of our subjects with them to help audiences better understand the life and death struggles that exist for many mixed race and minority patients.
If people have never been affected by knowing someone who has had a blood disease or blood cancer, there are many things they just don’t know about or may never have cared to know about. This was my experience before I started filming and it was amazing just how little I knew before I started this journey. I now have a greater perspective on this issue and how we as humans have the ability to make a real difference. Instead of just donating money to cancer research, this is an opportunity to help save someone’s life who is battling cancer. This is a cure for cancer that exists right now, and in this day and age, everyone should have the hope of finding their perfect match within the worldwide stem cell registry!
What can we do to learn more about stem cell / bone marrow donor match for those who watched this film and want to contribute? What resources are out there? What can we do to help make a difference?
For the film we created a digital media project entitled the Mixed Match Project. Here, people can learn more about how they can help. As well, they can watch bonus footage and extended clips of interviews with specialists to learn more about the science behind all this that we couldn’t go into detail with the film. We filmed over 200 hours of footage and there will be many more clips and interviews that will be added on a monthly basis so we hope people keep checking back to watch and learn more.
In Canada, check out the OneMatch website for more info on joining the registry and for expecting moms, check out the Canadian Blood Services’ Cord Blood Bank to see if the hospital you’ll be delivering at can accept umbilical cord blood donations. As well, the OtherHalf http://chinesestemcell.ca/ specifically target and register Asian and multiethnic people between the ages of 17 and 35 to join the OneMatch national bone marrow registry run by the Canadian Blood Services. Joining the national bone marrow / stem cell registry is as easy as a cheek swab. No blood needs to be drawn. More info at: http://chinesestemcell.ca/learn-more/why-does-ethnicity-matter/
What other projects are you working on right now? What can we expect to see from you in the upcoming year?
For now I’ll be spending a least a year touring and promoting Mixed Match at film festivals, conferences, hospitals and universities across North America, and possibly beyond. We have a huge tour planned this November that will see Athena and I touring across North America and presenting the film at film festivals. After that, I think I’m going to take some time and pursue a dream of mine since I was a teenager, writing and illustrating my own children’s books. Now that I’m a father (we actually filmed my daughter’s birth for Mixed Match and donated our baby’s umibilcal cord blood to the Canadian Blood Services’ Cord Blood Bank) I’m really looking forward to switching focus to drawing and illustrating again.
What would you tell a new writer who is interested in becoming a filmmaker? What advice can give to someone who wants to enter the industry?
Write a lot. No one will take you seriously if you’ve only written one script. You need at least 4 or 5 to really pitch or secure an agent. Plus the more scripts or pitches you have the better your odds of having something optioned and green lit! For every film I’ve made, I’ve had at least another 4 or 5 ideas that never materialized.
I’m also a firm believer that truth is stranger than fiction, which is why I love documentary so much. So write what you know and build in personal experiences and stories. As well, get used to rejection. If you don’t have a thick skin, this is not an industry for you. Never take rejection as a personal attack on you or your work. It just means it didn’t connect with someone. Perseverance is key. In this day and age of digital technology, it is so easy to go out and just start creating. Don’t wait for someone to give you permission or money to make a film. Just start making art. If it’s good, people will take notice!
Mixed Match – Festival Trailer 2016 from Mixed Match on Vimeo.