I'm a Level II Volunteer for the National Marrow Donor Program, meaning I've had the training to coordinate and run drives locally. Let me preface my comment by saying I'm in no shape or form someone who is qualified to speak for the organization as a whole, as I've only become a volunteer in the last year. These thoughts are my own.
In my limited experience being a part of marrow drives I've come across many people, both volunteers and potential registrants alike, who feel similar sentiments to those that you have expressed -- myself included. There's a lot about becoming a donor that I really wish was better. The policy to not accept homosexuals as donors is created by some FDA(?) policy, so while I also "get it" at face value I wish the reasoning was better substantiated than a blanket ban on a specific group of people. Unfortunately as volunteers we operate on the hope that those that set these medical guidelines have more expertise/experience/knowledge than we do, so we have little choice but to follow them as dictated.
There are other shortcomings. As others in this thread have expressed, the registration form is crazy long. There are reasons for that too -- an inability to contact matches on the registry results in over a 50% false-matching rate in some ethnic groups -- but still, it's not ideal. The form is also very personal, and while the NMDP takes confidentiality very seriously perhaps they don't emphasize that enough. Trying to glean bone marrow information off of existing websites can be a very kludgey process, as several of the websites can be difficult to read/navigate. And there's a bias in the registration process for ethnic minorities, simply because they are so underrepresented that there's funding in place to cover their $100 marrow processing fees. White Americans don't have as much funding. 75% of the registry is made up of White Americans, and when we register White Americans we must ask for financial donations to help displace some of those registration costs. As a Korean-American, minority volunteer, it bothers me that whenever a white person comes to the table I must ask for a donation but I don't necessarily need to do so for minorities. It's not because I want to be racially discriminatory. It's solely because of a lack of funds.
At the end of the day, despite the parts that I wish were different, I still do my best to recruit donors. I know that the time taken to register every new individual to the registry is really a chance at life for someone who is dying. Being a cancer survivor myself I don't think I'll ever be able to forget the feelings of sheer despair and uncertainty surrounding my health, so I know that to come to the aid of someone in that situation, with no other options, is really an incredible, life-changing opportunity.
I really commend you for your honesty, and I don't sense bitterness at bone marrow donation in your comment but sadness at the circumstances. I hope you know that you are not alone in that. Here's to hoping one day bone marrow registration gets easier/more accurate/more efficient, and more accepting.
> The policy to not accept homosexuals as donors is created by some FDA(?) policy
The language on marrow.org is unclear on this point, so I emailed them. The person who replied clarified that while their guidelines are "based" on the FDA's blood donation guidelines, their own Donor and Patient Safety Committee [1] ultimately determines policy.
I already posted this below, but I see that you're affiliated with the Marrow Donor program. I'm reposting this here on the hope that you can bring this the attention of someone who can make a difference.
Beyond being somewhat homophobic, this policy is actually counterproductive. The explanation is long, but I've written it all up here: http://bit.ly/q6624N . (The second and last points, in bold, are the most relevant).
Being Indian myself, it's incredibly painful to see posts like this and know that I can't do anything to help Amit out. Because I was never allowed to take the test, we'll never know if I would have matched Amit. But just think - what if I had?
Quick unrelated question: Could any typing done by 23andme.com be used by the marrow registry? I would think itd be awesome if a voluntary, opt-in data sharing agreement was established between the two organizations. When you login after your genotyping is done, one of the options could be "Do you wish to share your typing information to become a marrow donor?"
I don't mean to insinuate that it's a light decision to make (I recently joined the marrow registry, even though I won't be a match to Amit due to my ethnicity), but if the data already exists, why not reduce the friction to being a donor?
I'm a Level II Volunteer for the National Marrow Donor Program, meaning I've had the training to coordinate and run drives locally. Let me preface my comment by saying I'm in no shape or form someone who is qualified to speak for the organization as a whole, as I've only become a volunteer in the last year. These thoughts are my own.
In my limited experience being a part of marrow drives I've come across many people, both volunteers and potential registrants alike, who feel similar sentiments to those that you have expressed -- myself included. There's a lot about becoming a donor that I really wish was better. The policy to not accept homosexuals as donors is created by some FDA(?) policy, so while I also "get it" at face value I wish the reasoning was better substantiated than a blanket ban on a specific group of people. Unfortunately as volunteers we operate on the hope that those that set these medical guidelines have more expertise/experience/knowledge than we do, so we have little choice but to follow them as dictated.
There are other shortcomings. As others in this thread have expressed, the registration form is crazy long. There are reasons for that too -- an inability to contact matches on the registry results in over a 50% false-matching rate in some ethnic groups -- but still, it's not ideal. The form is also very personal, and while the NMDP takes confidentiality very seriously perhaps they don't emphasize that enough. Trying to glean bone marrow information off of existing websites can be a very kludgey process, as several of the websites can be difficult to read/navigate. And there's a bias in the registration process for ethnic minorities, simply because they are so underrepresented that there's funding in place to cover their $100 marrow processing fees. White Americans don't have as much funding. 75% of the registry is made up of White Americans, and when we register White Americans we must ask for financial donations to help displace some of those registration costs. As a Korean-American, minority volunteer, it bothers me that whenever a white person comes to the table I must ask for a donation but I don't necessarily need to do so for minorities. It's not because I want to be racially discriminatory. It's solely because of a lack of funds.
At the end of the day, despite the parts that I wish were different, I still do my best to recruit donors. I know that the time taken to register every new individual to the registry is really a chance at life for someone who is dying. Being a cancer survivor myself I don't think I'll ever be able to forget the feelings of sheer despair and uncertainty surrounding my health, so I know that to come to the aid of someone in that situation, with no other options, is really an incredible, life-changing opportunity.
I really commend you for your honesty, and I don't sense bitterness at bone marrow donation in your comment but sadness at the circumstances. I hope you know that you are not alone in that. Here's to hoping one day bone marrow registration gets easier/more accurate/more efficient, and more accepting.