Without Leukemia

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.

that younger donors are more likely to rem

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).

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.