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Blood Discrimination

I’ve posted before about my adventures with hemachromatosis, and my negative experiences with the Puget Sound Blood Center. Things since the last post hadn’t improved tremendously, but I still went (out of my way) to perform my therapeutic phlebotomies there since it was contributing healthy blood to the public blood supply.

Now, normally, when I arrive at the blood center:

0) Call special hotline to make therapeutic appointment
1) Sign in with the volunteer. Explain that it is a therapeutic donation.
2) Volunteer says, “Oh, *I* can’t sign you in but someone will be over shortly.” Places Red Folder of Illness on chart holder indicating therapeutic donation.
3) Regardless of appointment time, wait until phlebotomist can check me in (can be 15 min+ on a bad day)
4) Fill out the full questionnaire about blood viability just like every other donor
5) Get the preliminary checkout and tests just like every other donor
6) Donate blood
7) Explain to volunteer that I can’t rebook through them due to special hotline requirement

Today, however, they skipped step #4 and took me straight into the checkout. They didn’t mention anything was amiss. But during the actual draw, I noticed the phlebotomist did not draw the usual vials of blood for the standard blood checks. Thus prompted, I asked why there was no questionnaire today. The phlebotomist made a face, and said, “The PSBC has made a change to their policy and they are now discarding all therapeutic donations.”

The phlebotomist was very apologetic and also expressed his active frustration at the situation. I was just livid. After all the hoops I jump through every time, they couldn’t even email or call to notify the donors affected? They even make us CALL A SPECIAL DEPARTMENT – why wasn’t it mentioned at the time I booked the appointment?

“Well, we’re still not going to charge you for it.” Oh, how benevolent. I don’t go to the PSBC for ‘free’ bloodlettings. I can get those anywhere, including 1 block from my house. As a hemachromatosis patient I can’t really afford to waltz around without insurance due to the monitoring required. I got in my car and fought traffic to come and donate my blood under the assumption that the perfectly healthy and extra iron-rich blood would be used to help someone. Instead, they were just going to quietly discard it, without even telling me to my face.

Needless to say, I’m quite upset about the development, as I do these bloodlettings once a month. 12 pints of perfectly good blood every year going down the drain. And it was the ONLY silver lining in a permanent situation that involves tons of needles and inconvenience and a few lifestyle changes.

And if it were possible to make me more frustrated with the Puget Sound Blood Center after my previous encounters, they’ve certainly found a way. I’m used to being treated like I have the plague when coming in, but this is a new low. The FDA has no problem with this blood being used; it’s just a needless affront to people trying to help. In case it isn’t clear: the only distinguishing characteristic of hereditary hemachromatosis blood is extra iron. It is not a contagious condition, and the iron is actually beneficial in many cases.

And the screening process is a giant pain – they make us provide documented proof of our genetic mutations in order to contribute to the pool. There is absolutely no reason to discard this blood. They have had all the information they need for years. Now all the extra work we’ve gone through to get ourselves set up in the system – work we did solely out of a desire to help save lives, and for no personal benefit – was in vain.

Worst of all, I got a letter soliciting donations from PSBC just a few days ago. They can spare the money to print and mail a letter asking for money, but can’t even tell me when I’m on the phone with them that they’ll be rejecting future donations of viable blood. At this point, the only thing I can do is phone in to get removed from all of their mailing lists and start returning to my nearby lab so I can get these bloodlettings done in a minimum of time and hassle and without feeling like a second class citizen just for trying to do something to help others.

I doubt even a reversal of their recent policy change will be enough to convince me to return at this point. And I know I’m not the only one this affects. Hundreds if not thousands of pints of viable blood a year being turned away certainly makes you wonder about their need. And the way it’s being handled makes me wonder about their leadership.

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