A Conversation about Other Half, and the Power to Save Lives

By Brian Asin

 

This Labour Day weekend, members of the 180th Pacific Coast Scout Group volunteered at TaiwanFest 2016 with an organization called OtherHalf-Chinese Stem Cell Initiative. This Canadian charity strives to increase the number of potential stem cell donors in the global stem cell donor registry. Though they do not limit themselves to only people of Chinese heritage, their initial goal was to increase Chinese representation in the registry, which is still very low. This would improve the chances of Chinese patients, who have a much slimmer chance than that of the average person.

I recently spoke with Mandy Pui, who has been a long time volunteer for the organization before eventually deciding to work for them. Here is what she had to say:

Me: Hi Mandy! Could you give me some background on OtherHalf, and the work you do?

Mandy: The OtherHalf-Chinese Stem Cell Initiative started in 2008. It started through a Chinese patient seeking help by reaching out to the team at Sing Tao Newspaper. Unfortunately, by the time a match was found for her, it was too late, and she passed away before the transplant could happen. That really got the ball rolling. You know, there are usually about 50 Chinese Canadians who are looking for a match. What could we do to help them?

When we began, there were about 2000 people in the registry who were Chinese Canadians. Now we have about 30 000 Chinese Canadians registered. So we have been really effective in our work to get more Chinese people in the registry, which is important because patients have about a 2 month window on average to find a match. They might have already gone through chemo, they might have already looked within their family. Those that still need help no longer have much time at all once they reach out to the community.

There is a  1 in 750 000 chance of finding a match. The reason for this rarity is that it’s not as simple with the 8 or 9 blood types. A donor’s HLA protein has to match exactly with the patients to avoid rejection of the stem cell donation. It’s because of these odds that we need to get as many people in the registry as possible. We started as a group helping Chinese patients, who are severely underrepresented in the Canadian registry, hence our name. However, it’s not exclusive at all. Our mission is really to raise the awareness, to clarify the misconceptions when it comes to stem cell donations, and also just getting people to register and help out.

 

Me: Could you talk more about those misconceptions that are potentially keeping people from registering?

Mandy: Yes! Well, there could be a lot of hesitation. People don’t want to contribute when they do not fully know what they are getting themselves into. I often hear, ‘ahh what are stem cells?’, or  ‘I don’t want to worry about my cells being manipulated! And what about cloning!?’. Even though I have been working with OtherHalf for almost 5 years, a lot of my friends still don’t know what I am doing!  

 

Me: Do you think it is also a lack of information available? Just the plain fact that most Chinese people in Canada aren’t quite clear of the stakes, or even the issue at all?

Mandy: Yeah! Even for us. This weekend at TaiwanFest, if someone’s walking by, it’s not easy to say just in one sentence what you want from them. In order to make it completely transparent, you have to take the time to deliver all the information.

 

Me: Touching on our collaboration at the TaiwanFest now, we are really happy to be able to participate and collaborate with OtherHalf! It really expands our potential.

Mandy: That sounds fantastic, I totally agree. I work as a non-profit consultant. OtherHalf is one of seven places that I work with, and yeah, it’s all about partnering up and collaboration these days. ‘If you want to go fast, go alone, if you want to go far, go together.’ You know, sometimes it takes longer to work things out, but once you do there is way more synergy, and you get more of an impact.

 

Me: I totally agree! Now I just wanted to know, how did you meet our scout group? How did this collaboration come about?

Mandy: I’ve been friends with Darren Shum for over 10 years. We were on the same Ultimate team back in University. So there was that, and also, I was a scout leader for about 2 years with Terranova, in Richmond.

 

Me: No kidding! So this is not your first interaction with Scouting…

Mandy: A few months ago, I was talking with Darren about this cause. We were at the night market and he signed up. We were talking about how maybe it would be a good opportunity for the scouts to get involved. I then got in touch with Alice! That’s how we got the ball rolling.

 

Me: I see. What kind of a collaboration is it? What will volunteers from our crew be doing?

Mandy: The volunteers are split in two groups. We want people to be talking to the public, to tell people what this is all about, and encourage registration. The other group would be taking care of the registration and swabbing the volunteering participants.

 

Me: This collaboration with OtherHalf is so different from what we usually do. In our scout group, we have heard the word ‘nuanced’ going around. Could you describe how the cause is nuanced?

Mandy: Yes. It’s nuanced because we have patients/people that have come out of the woodwork. They have asked us to help them when their problem is really life or death. Sometimes, we weren’t able to help them in time. Then again, that is what motivates us to do our work. It is time sensitive. It’s not one of those things that we’d want to be too laid back about. Usually, when someone comes to us, they have an average of a two month window to find a match.

 

Me: I see, so time plays a big part in what you do, and how you approach things. Anything else you would like to add?

Mandy: The other thing about this cause is that the people who are coming out to help would really get to feel like they are making a difference. A lot of times, when people are volunteering, you are just keeping people company, and you don’t really feel like you have accomplished anything. For this, you might have found someone a match to save their life. There is that feeling where it’s not just putting in the time and getting your reference letter. You really feel like you are doing something meaningful.

 

Me: Yeah! I guess in a sense, it feels morally rewarding; the fact that our actions can potentially save a person’s life. This is an extreme example, but it is really in line with what our Rover Crew is trying to do: to impact the community in the most meaningful way possible.

Finally, say I am someone coming to your booth on September 5th. What would you say to me?

Mandy: Well first of all “we want you to swab”. That is our goal. We have to inform them about what happens to their swab, and the registry. If they are a match, we have to tell them of the procedures. If they agree, 90% of the time it will be a blood donation, 10% of the time, it’s a bone marrow donation from the pelvic bone. You really have to make sure these people registering have all the information they need. The other thing that is working against us is the misconceptions about stem cell donation. So there is a lot of opinions working against us, and so a lot of information we need to provide.

 

Me: Well, I think OtherHalf is really lucky to have someone as dedicated as you, Mandy. You seem to really have your heart and mind in the right place. Thanks so much for your time.