Monday, November 2, 2009

How to run a bone marrow registry drive (at a scifi con)

A slightly different version of this article I wrote (edited for folks in the midwest versus the northeast) ran in the most recent issue of Midfanzine 4, edited by Anne K.G. Murphy. Thanks Anne!


1. Why?

More than 35,000 patients per year, many of them children, are diagnosed with conditions treatable by marrow or stem cell transplant, including leukemia, other cancers, and genetic diseases.

When someone needs a bone marrow transplant and none of their family members are a match, the registry searches for a donor whose tissue type profile is compatible. 70% of people requiring a transplant need an unrelated donor.

A person looking for a match may find one potential donor in a pool of 20,000, or 1,000,000, or more. The most likely match for someone is a person of the same or a similar ethnic background. No one is guaranteed a match, regardless of background, but ethnic minorities are especially underrepresented and have even less chance of finding a matching donor. Then they have to hope that person is on the registry.

You might be the match necessary to save a life.

Many people do not consider donating because they may not know they can help, but also because they have misconceptions about the donation process. Drives are a great venue for getting folks' questions answered.

Scifi cons bring lots of people together. The Heinlein Society and other organizations use this opportunity to replenish our blood supply (always in need of donors) and you can use this opportunity to spread the word about the bone marrow registry and even add new people to it!

2. How the registration process works

*Either go online or to a drive and make sure you are eligible to join the registry (although there are many registry organizations under many names, they share their data with one another).

*The kit includes a form, labels, and two to four Q-Tips or cytology swabs (like Q-Tips except brushy instead of cottony). Potential donors swab the insides of their cheeks, fill out the relevant forms, label their swabs and swab holder, and they're all set.

3. Convention divisions/div heads who may be involved
*Whoever's handling fan tables
*Member services/Registration (if you want to use their card chargey machines)

4. What you need

+Somewhere to be.
A site (in the case of a scifi con, usually the primary hotel or convention center)

To make sure the operators of the location as well as the convention committee understand what you are doing. Some of them may think the registration process is more involved than just doing a cheek swab and balk.

+Location, location, location.
A table, preferably in a high traffic area (near registration is good) like a hotel lobby. If people are doing a blood drive onsite, it often makes sense to be near the blood drive or its donor intake table. Coordinating your efforts and cross-promoting with folks running blood drives at conventions is a Good Idea. Everyone wins!

+A registry organization to work with.
You can look online for one in your area. Registries with offices across the US include Be The Match (also known as the National Marrow Donor Program) and DKMS. Red Cross offices often have a relationship with the National Marrow Donor Program. There are also local blood services all around the country -- in New York, for example, there's the New York Blood Center -- and many of them have bone marrow registry offices. If you can't find info on their website, call them up (an out of date website doesn't necessarily mean a bad organization, they may just not have money for a redesign right now . . . ). Once you decide what registry organization (whether local or national) you are going to work with (and it makes sense to make some phone calls and shop around before you make your decision) your liaison with that organization will be able to give you a lot of helpful pointers on getting together money or making sure you have what is needed to run the drive. Some registries will send people to staff the registration table (although even then you can still contribute work at-con promoting the drive, especially at a big convention). Others will just send you forms. You will always have some contact there, but make sure you understand how much support they will be giving you. Some registries also may not register men who have had sex with men since 1977, citing their concerns about the statistical likelihood of those individuals having been infected with HIV. Caitlyn Raymond International Registry (which does drives in New England) accepts healthy donors regardless of sexual orientation, and there may be other registry organizations who do the same in your area. This is also something to consider when you decide what group to work with, although your region may not have a group of that kind, and if that is the case, you should STILL organize a drive with the organization you find to be the best fit anyway (lives get saved either way), but make sure to mention your concerns where appropriate, as nothing changes when people keep their mouths shut.

+Working with money.
Sometimes, you'll need to raise money, and sometimes you'll need a way to take it (cashbox or access to the card chargey things at registration, for example, although the old-fashioned carbon-swipe things don't require an internet connection, heh, and neither does a cashbox). Private insurance plans based in Massachusetts, Rhode Island and New Hampshire are required to cover the cost of tissue typing for the bone marrow registry, which varies from region to region (deductible and co-insurance do apply), so if you're running a drive in one of these states, you're home free (the registry organization will often cover the cost of a few out of state donors if you have them, although it is always good if folks can pay and are from out of state that they do pay, and make it easier for poorer folks to join the registry). Often even if registries charge potential donors a registration fee to defray the cost of typing they will still be subsidizing some of the cost. You can raise money to defray registration costs for a drive the same way you would raise money for anything else -- talking to local organizations and businesses. Make sure you speak with your liaison at the registry you work with to figure out how to best handle this element of the drive where applicable.

Good ways to promote your drive:
*on the website, as well in as any other web presence for the con you can get onto -- LiveJournal, Facebook, MyFace, Twitter, Ning, etc.
*flyers and buttons are your friend. Consuite may let you put flyers on some of te tables. Registered donors or members of the drive team (whether already on the registry or added at the convention) wearing buttons or tshirts promoting bone marrow registration is excellent.
*in the pocket or souvenir program (pocket ads are cheaper)
*fun slogans. On the Heal Emru flyers, it is "You Can Be A Hero!" One of the registries has buttons that say "Will You Marrow Me?"
*at Arisia, a convention in Massachusetts, the blood drive folks did a skit at Masquerade opening (halftime also works). Is there a big event (or are there a number of big events) at your convention? Those are good times to promote the drive. The events division is your friend. Talk to them *early* and *often*.

5. Useful Resources

*List of registries around the world

Be the Match (NMDP)


Search tool for listings of members of the American Association of Blood Banks

How-to on running a drive from Be The Match (mostly connecting you
with one of their drive liaison people)

How-to on running a drive from DKMS (mostly connecting you with one of
their drive liaison people)

Caitlyn Raymond International Registry (If you want to register online
with them on your own, you can! This is that page)


Tamu said...

Thanks for writing this.

Three points and a suggestion:

1. Fundraising is sometimes an issue for organizers. Other drives may have a pool of funds they are willing to transfer to your drive, taking the fundraising element out of the way. The transfer of funds handled by the registry once the other drive grants permission, so there is no movement of liquid assets.

2. Because the need for bone marrow donors is high, it is never too hard to find someone on the region that is running drives, often because of an immediate need in their family. You can contact a team already running drives, and act instead as a liaison between them and the con. You are basically alerting them that there is a friendly space at your con.

3. The issue of sexual orientation. There are a lot of people who are not eligible, usually for credible health reasons. Will I personally disagree with the ban, this is a good time to educate people about it. You will often find people who run drives disagree with the ban, including people from the registry (it is the government that sets it, not them). Also, like all ineligible groups, it is a good time to inform people of the myriad other ways they can help.

Can you list an approximate amount of time you think is required by each part of the organizing team? You are right to list the conchair, but he or she may not realize there is very little time used by her or him to OK this activity and be aware of the project's progress.

Excellent article! I will be linking to it!

Val Grimm said...

Tamu: Good points all of them.

As to time for each group in concom, really the people one would talk to would be the events or fantables person and web person.

Thank you for linking and commenting!