This morning I trudged a mile in the snow (over many unshoveled sidewalks) to participate in the Alexander Phan Bone Marrow Drive and completed a long paper application form, only to be soundly rejected due to diagnosed sleep apnea without corrective surgery. It was a frustrating experience, but if the process were revamped, there would have been several opportunities to build good will even if I could not volunteer/join the registry.
While I totally believe that bone marrow donation and a registry program are quite valuable, the recruitment and screening process leaves much to be desired. I’m frustrated because they wasted my time, so am going to go out on a limb and make suggestions based on this one experience.
I heard about this drive via email and facebook, which did a good job of personalizing it to help a particular boy (when, in fact, the greater pool of patients in need will be served), but neither source directed potential volunteers to online links to help self-determine whether they would be (dis)qualified. There are many medical guidelines to ensure the health and well-being of donors and recipients, so it would be nice to share the major requirements like Beautiful Lengths does for potential donors of hair for wigs for cancer patients. If this were the case, then I could have self-selected myself out of the process early on and saved everyone the time and effort. Instead, there was pressure to show up no matter what the weather/road conditions rather than to click to check and see if you could be of help.
Though the National Bone Marrow Registry cannot control social media players, they still had several more, preemptive opportunities to conserve effort and to build good will in the process. Initial signage at the drive should name all of the required medical criteria–sleep apnea/breathing disorders were absent-not just the major ones like criteria already associated with blood donation–particularly when this drive’s organizer has sleep apnea and knows he cannot be a marrow donor. (I’m an occasional blood donor, so I knew that I was acceptable in this regard.) The lower third of signs was dedicated to gross obesity charts, apropos for our overweight nation, so I could check and see that I fell within the acceptable range.
After reading the signs, I was thanked for showing up, given 10-pages of paperwork to read and complete, and asked to consider making a $25-$52 donation to cover the cost of my tissue typing. Instead, I suggest that the National Bone Marrow Donor Program reorganize WHEN one talks with the trained staff and volunteer screeners and RECEIVES and COMPLETES written information:
- Before filling out any forms, direct me to read the registration and consent for HLA typing so any disparity between what the registry requires and what the potential volunteer is willing to do is resolved or participation is preempted right away. These four pages were sandwiched inside the six-page application form, which also duplicated two of the key pages at the very end.
- A real person, not a form, should explain the purpose of the specific medical guideline questions before the form is completed. No one can argue with expert criteria for the well-being of donors and recipients, and understanding makes potential rejection easier to accept. Then a potential bone marrow donor should describe/check off conditions and be counseled/rejected for any conditions that could be or are unacceptable. At this point, the potential volunteer has invested very little effort, so can walk away “no harm, no foul” and still feel good about trying. (It was deflating to have my detailed application form given back to me to destroy due to all of my personal information in it.–It felt like there was absolutely no point in my showing up and completing the detailed form.)
- If the potential bone marrow donor volunteer seems like a good candidate, s/he should then be required to fill out detailed personal, employer, contact persons’, and other information before moving on to a cheek swab and request for a donation to cover part or all of the cost of his/her tissue typing.