Helping kids understand

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In my previous post I observed that having younger people register as stem cell donors would be important, given that younger donors are generally preferred and provide better outcomes for recipients and also so they are able to be viable donors for a longer period of time. Given this, I was curious if there were any efforts to educate children or youth about the need for donors or about the process so that in the future, as they moved through high school and became eligible to register, they would be more open to the possibility and be advocates within their peer groups. I am not aware of any educational efforts around stem cell, blood or other donation efforts targeted at youth, but it was something I’m still curious about.

Yesterday “Lucia” left a comment on an earlier post about a company called Medikidz that helped educate kids about health issues and, apparently, had really helped her family. While not specifically targeting education around being a stem cell (or other) donor, Medikidz seems to have latched on to an interesting way to help kids understand medical issues generally. The company was founded in New Zealand in 2006 by Dr. Kim Chilman-Blair and produces a series of graphic novels geared towards children and designed to teach them about medical issues. The website probably does a better job of describing the concept of the books than I could:

The ‘Medikidz’ are a gang of 5 larger-than-life superheroes from outer space, which are each specialists in different parts of the body. The characters are designed to be fun and appealing to children in order to be able to entertain, as well as educate them about serious medical issues. They are destined to become characters with whom children can relate, and befriend.

The Medikidz characters live on ‘Mediland’ – a living, moving planet shaped just like the human body. The children are taught about their own body by going on a personal tour through Mediland. Medikidz is designed specifically for children: therefore we will speak their language, at their level, via comic books, games and an online virtual world.

Medikidz explain leukemia

Medikidz graphic novel about leukemia

The site also has a wiki-like directory of information about large range of drugs and procedures that kids might encounter in facing a variety of illnesses, including lumbar punctures and cyclophosphamide.

Medikidz Ltd. has also established the Medikidz Foundation, a medical children’s charity, “in order to redress the paucity of even the most basic medical information in developing countries across Africa, Asia, and other less fortunate parts of the world.” It’s a registered charity in England and Wales. A portion of profits from the sale of Medikidz graphic novels goes to the distribution of these books in developing countries and, according to the site, eventually to establishing clinics to provide information and support as well as “doing important work through the free treatment of various illnesses.”

While the Medikidz seem to be focused more on educating children about their illnesses as opposed to illness in general, they do have information on the site about bone marrow transplant, stem cell transplant, stem cell donors and even GVHD. In addition, they have a graphic novel about leukemia. Presumably the same information would be useful to kids who parents, friends or relatives were ill or understanding illnesses in general and how others can help.

The Medikidz Foundation is focused on helping kids in developing countries learn about their illnesses, but perhaps there is a roll for a foundation to support the education of kids from a variety of ethnic groups in developed countries about health issues faced by children around the world. This might not only plant the seeds for future stem cell, blood or organ donors, but also might encourage children to become advocates more generally and encourage their parents to support causes such as Medikidz or, perhaps even more importantly, be aware of these issues in the political and other decisions they make. Given that it is often a struggle to get Western governments to health issues in the developing world a little push from our kids certainly can’t be a bad thing.

Why we will alway need more donors

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When I first started thinking about finding ways to increase stem-cell and marrow donor recruitment I was thinking primarily in terms of increasing the pool of potential matches, especially for those with less-common HLA types. After all, many bone marrow drives focus around finding matches for specific people unable to find matches within existing registries.

While doing some searching today, however, I came across a journal article [pdf] published in Bone Marrow Transplantation that pointed out something that, while common sense, wasn’t immediately obvious: As registered donors age, they will eventually exceed the age limits of the registry (often 50) and be excluded as a potential donor. The article also points out that some studies have shown increased effectiveness/survivability for donations from younger donors. I know, in my case, the fact that my donor was a a strapping young lad (apparently) was viewed as a positive factor.

In addition, there is apparently some evidence that very young donors more often withdraw their consent to donate than older donors. This, of course, creates even greater pressure to recruit donors from younger age groups. It also suggests there may be opportunities for education amongst younger donors to alieviate some of the concerns that might result in the removal of consent.

This raises the question about the most effective recruitment strategies. I have seen a number of workplace-based efforts and traditional fundraising events for recuitment, but these would tend to favour recruitment of established, working-age (perhaps 30+) donors, rather than younger donors. Given the need for young donors, perhaps there are opportunities for more effectively targeted education and recruitment of high school and university students. I can say this hadn’t occurred to me until now, so there may be a number of these efforts underway already.

It will be interesting to see what is being done, or to give some thought to what could be done. Look for updates soon.

Recruiting donors through social media

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One of the biggest challenges in finding a match for someone in need of a stem cell transplant is the lack of diversity in most stem cell registries. The need to match specific genetic markers means that it is most likely that a donor will be found within the same ethnic community as the recipient. Unfortunately, many ethnic groups are under-represented in registries. Indeed, according to Canadian Blood Services, Canada’s OneMatch registry consists of 83% caucasian potential donors, leaving only 17% of potential matches to come from the many varied ethnic communities in the country.

OneMatch, as well as registries in other countries, do make efforts to specifically recruit from a broader cross-section of ethnicities but, as far as I can tell, mostly in fairly traditional ways. There have been other interesting campaigns to recruit donors from specific communities.

This is a three part video of a presentation about an effort to use social media to recruit bone marrow donors from the South Asian community specifically for two individuals suffering from leukemia, but unable to find matches. In the course of the campaign, they were able to recruit an additional 24,000 people to the bone marrow registry, including 7,500 in the San Francisco Bay area, where the campaign was centred, and from that 7,500 85 new matches were found. As one of the presenters points out, when you scale that nationally (or internationally for that matter), it adds up pretty quickly. And since all the major international registries are connected through Bone Marrow Donors Worldwide the potential for matches is increased for patients the world over. Indeed, Canadian Blood Services reports that in 2006 77% of stem cells used by Canadian patients were imported from other countries.

Have a look at the presentation. The effort that was put into the campagin is impressive, and there are definitely a number of good ideas that could be applied to other campaigns.

Part one talks about the background of the case, a bit about leukemia and its treatment; part two basically outlines their campaign; part three talks about the outcomes, offers some lessons and talks about the impact of the campaign.

Part 1 of 3:

Part 2 of 3:

Part 3 of 3:

I would love to hear about what you think about this type of campaign. It seems to me that a lot of these ideas could be useful in some kind of ongoing way, rather than focused just on a specific campaign at a specific point in time (although the campaign does seem to be continuing in some form at www.helpsameer.org).

Give the gift of life in 2010.

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Today (January 16th) is exactly one year since I was diagnosed with relapsed Acute Lymphoblastic Leukemia and admitted to the hospital. Just over 4 months later, on May 29th, I received a stem cell transplant which will hopefully result in a lasting cure.

I was lucky, as I have a relatively common HLA type, so finding a suitable donor was not too diffucult. Others aren’t as lucky. Particularly amongst certain ethnic groups the number of registered donors is quite small. This seriously limits the potential for donor matches for patients from these groups.

Less than a third of those needing a stem cell transplant are able to find a suitable related donor, meaning they need to find an unrelated donor through national and international donor registries. The more donors on the registries, the more likely these patients will be able to find a match and receive what is, in many cases, the only available life-saving treatment.

Considering the poor prognosis for relapsed ALL without a transplant, I owe my life to my stem cell transplant, and the donor who made it possible. I want to ensure as many people as possible are able to benefit from this type of treatment, so I have decided to dedicate the next 4+ months, from now until the anniversary of my transplant, to a concerted campaign to raise awareness about stem cell donation.

I’m not sure what to set as a goal for my “campaign” (I’ll think about that over the next few days) but if I am able to spread the word and encourage even a few more people to register as donors I will have accomplished something.

As 2010 begins, many people are thinking about how they can contribute to good causes. Given the economic circumstances many people face, monetary donations might be a little harder this year. Fortunately, registering as a stem cell donor costs nothing and gives you the opportunity to save a life. There aren’t too many opportunities like that.

If you’d like more information and links to the organizations that coordinate stem cell donation, I’m compiling a list of links on this page (“Be a donor” on the top menu). There will also be more posts over the next four months, so check back for more information and stories.

If you do decide to register as a donor, I would love if you would leave a comment here or on the “Be a donor” page. You can also find me elsewhere on the web if you’re interested.

A new toy or real solutions?

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Yesterday’s Winnipeg Free Press featured an article revealing that a report by City police officers exaggerated the benefits of a police helicopter for the City of Winnipeg. The author of the study on which much of this report is based points out that the authors have been fairly selective in emphasizing the positive and minimizing the negative aspects of the case for police helicopters.

An editorial in today’s paper asks whether Winnipegers have really been given a clear picture of the costs of a helicopter, especially given that benefits in terms of crime prevention are not entirely clear. The choice to procure a helicopter as a crime-fighting strategy, the editorial points out, is more a question of “taste” than actual evidence-based policing strategy.

I can’t help but wonder if, when our new helicopter spends the majority of its time over the same areas of the city, anyone at City Hall or the Province will stop to think that perhaps they are missing the real issue. Do we really need to spend a couple of million dollars a year on what is esentially a policing “toy?” Perhaps our money and attention would be better spent on community economic development strategies, addressing child poverty or re-evaluating how investment in sprawling suburbs is undermining the health of core area neighborhoods.

As with health care, it’s a lot easier to throw money and “stuff” at the problem of crime that it is to look for lasting solutions. Given the substantial evidence of the social determinants of health and social and economic roots of crime, it seems to me it’s about time we stopped trying to paper over the real issues and made some difficult decisions about what’s really going on.

What could have been? What can be!

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When I hear of people who have been blogging for 10 years and are fixtures on the internet, I am always secretly impressed and jealous, and feel like somehow I missed the boat. The truth is, however, that while I wasn’t “blogging” per se, I did have a website in 1997, and was actually quite interested in the broader implications of the internet and the web.

In 1997, which was the last year of my undergrad, I wrote a paper entitled “Virtual Space and Idea-sharing Amongst Public Interest Groups in Canada.” (I would post it here except that I haven’t been able to find a paper or electronic copy for a while now.) Thinking about it, and some of the ideas I was working on, makes me realize that, in what would be a somewhat updated and enhanced version, that paper could be extremely relevant today. Indeed, if I had continued my research along those lines I may have been in a very interesting place now in terms of the work I was doing and the opportunities available to me.

Of course looking back longingly or regretfully isn’t a very useful exercise. Instead, I guess I should take this as a lesson and, in the future, have more confidence in myself, my ideas and the importance of exploring them. I do tend to sell myself short sometimes, and I often hesitate to invest a lot of effort into ideas for fear that the effort will be wasted. Not a very productive attitude, but one I guess I have to work on.

I think it was Nora Young‘s interview with Seth Godin on Spark that got me thinking about this. Seth talks about having to do something that feels risky to truly make yourself indispensable. He also talks about given up fear and control in terms of interacting with the internet, which I think is pretty relevant for me as well. So much of what I do or don’t do is based on an elaborate calculation in my head about what the possible outcomes might be. But, as I think Mr. Godin might point out, it really is impossible to know what the possibilities are until you try something.

So, for the New Year, here are a few things on my agenda: More doing, more creating, taking more chances and having more fun doing it.

If nothing else I’ll have a lot to show for 2010.

A sense of urgency

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I remember back in 2002, as I was recovering from my first battle with leukemia, I was gripped by a sense that I had been given a sign, that somehow I had to get out and do something of significance. Of course, being me, I never really settled on exactly what that was and the feeling sort of passed. Don’t get me wrong, there is always a significant part of me that feels my choices should be governed by how I can make a positive impact on the world. It’s just that part of me got a little quieter over time.

Today, now about 6 months post stem cell transplant, I also have this sense of urgency, although this time it is a little bit different. Before, my visions of what I needed to do were grand, monumental even. Change the world in 6 weeks kind of stuff. Today, I really feel a need more to do so many of the things that I have thought about doing, or started doing and never finished. I talk a lot about how important it is for people to be engaged and participate in politics, yet I have done very little to involve myself in the process. I’m always going on about writing this and that and yet when it comes to actually getting it done I do often end up paralyzed, afraid to start or to go beyond some initial conceptualizing. And while I have lots of thoughts and ideas about how the world can be a greener place, I find myself, often, not going out of my way to make the greenest choice, not always living what I ostensibly think and preach.

Now don’t get me wrong, I’m not suggesting I’m going to go out and swing my whole life around tomorrow. Far from it. That would be too much like I tried to do in 2002, and I could see myself sitting here stunned, overwhelmed by the enormity of it all. No, I’m looking at it more like a project of continuous improvement: I know where I want to go, and it’s a question of making individual choices along the way to get there. When I’m feeling nerdy, I think of it as a kind of kaizen, whereby every thing I do, I try to do just a little bit better each time, guided by my values and and understanding of where it is I would like to ultimately be. It reminds me of the phase at the Home Depot where we all ran around with orange bracelets that said “Improve Everything You Touch” (inspired I believe by Bob Nardelli’s devotion to Six Sigma) which, really, isn’t that bad a way of looking at things.

So today my sense of urgency about these things is, in many ways, not as urgent. I feel like I’m doing well, can makes some good choices and feel good about what I accomplish. Still, have fought leukemia twice now (and, in some respects, I am still fighting I suppose), there remains that sense that my time might just be limited. It’s not something I think about every day by any means, but the reality is many wonderful people I have met or known over the last 8 years who have fought this disease are no longer with us, and the numbers tell me it isn’t just my imagination. I don’t and won’t let myself obsess over this, but it’s hard to keep it out of the back of your mind.

I also feel a sense of resposibility. I’m here and so many who have been in my position are not. How can I not do my best to make the most of my life, whether it is significant and world-changing or not. So for those I’ve met, friends I’ve made, who fought the battle and lost, I will do my best to make the most of what I have, and to “improve everything I touch.” And for Tommy and Bennett, my wonderful sons, I hope that in living my life this way I can provide an example of which you can be proud, regardless of what may come.