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Sunday, June 12, 2011

An Open Letter to Canadian Blood Services

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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January 15, 2011

Dear Canadian Blood Services;

Allow me to introduce myself.  My name is Lauren.  At this time that I am writing this, I am a 35 year old "wanna-be" altruistic, non-directed, living kidney donor.  I am also (outside of this donation screening time period) a regular blood donor with your organization. It may also interest you to know I am the blood donation coordinator at my place of business. I am very pleased that over a third of our employees donate now on a regular basis and I'm trying to increase that by engaging our employees with positive stories of blood donation and its many benefits in our community.

In late October 2010, I entered the screening process here in Alberta to become a kidney donor. Here we are in January and I'm almost all the way through. I look forward to hopefully giving someone a gift that will make their life exponentially better. It has been quite a wonderful, interesting journey thus far and I hope to see it continue.  I realized as I started learning more and more about donation, the process and kidney disease, that there is a lot for the general public to learn and understand. There are SO many people suffering from kidney disease and as you know, most will not receive the transplant they need to save their lives.  There just simply are not enough organs. I am a natural communicator (as my mother would say) although I much prefer writing as my method than other forms of media. The more I got into this, I quickly saw and opportunity to help my friends, family and coworkers learn more about the need and the process that one must go through to become a donor. As you can imagine, many of my friends and family had reservations about my decision and I wanted to help them better understand what I was trying to do. For geographical reasons, I opted to start a blog to inform, reassure and educate. It was something else I could do to help both my loved ones and also the many people out there struggling with kidney disease. I wanted to write "as I went" about it as I went in case I was not eligible to donate-so that the message wouldn't be lost. A few months later, after some people became aware of my blog, I got a call from my local transplant program.
I was told based on a mandate or policy from Canadian Blood Services that if I wanted to donate, not only could I not speak to the media but I had to stop writing my blog, effective immediately. No room for discussion.  I was told that if I continued, my file would be put on hold until I complied.

I know the living donor program is new as is your national registry and everyone is still learning. I can appreciate that and perhaps would offer my feedback on things as well if given the opportunity.  However none of the organizations involved are new.  You have been dealing with donors and patients for years and years. You have highly developed communications strategies, legal teams and program managers.  Your business has always been people. And in this particular situation, with this policy, I stopped being the patient and became a liability, a risk to manage.

Because of my professional background (involving privacy, compliance and communications) , I can relate and understand most of it (that doesn't mean I agree with it). However I think the policy may be hurting as many people as you are trying to protect. Did you know there are hundreds of Canadian and American blogs out there talking about the experience of donating a kidney or needing a kidney out there? There are Facebook groups, online forums and other social networks just for the kidney community. Are you also planning to tell telling people waiting (indefinitely) for kidneys they can't talk about it either or no kidney for them?

As with most ultimatums, he or she who issues them usually wins especially when they are bigger than you. What is troubling is that no where in your privacy guidelines does it even indicate that one cannot talk to the media or write a blog before surgery-it is just recommended that we don't. You outlined three risks (all of which pertain to me and not the program, all of which can be overcome). No where in the policy does it indicate that a possible consequence of writing a blog or sending an email could lead to donor ineligibility.  But yet that is the reality out there. I have had no choice but to make the decision to stop my blog because someone needs my kidney and that is far more important than any policy you can sideswipe people with.  That being said, I am not about to not express my opinion to you on the impact it has had on me and my experience.

  • As I mentioned, my wanting to donate was a big decision that was of concern to some of my friends and family. I live in Alberta and many of them are in Ontario or in the United States.  This was the primary method of communication for these people, that without notice, was cut off. No support for me, no awareness and comfort in my decision for them pre-donation. 
  • As much as there are standards and rules in place to uphold and protect  privacy, do I not have an ability to waive that right?  After all it is my privacy. I  understand not identifying others involved at the time of donation but at this point-it's just me?
  • I was starting to become a part of an online community of people across North America that have donated, want to donate or are supporting someone with kidney disease.Without warning, I was unable to participate in that community with was a great source of information and support for me. I am not sure if you are aware but most people affected by kidney disease really want to talk about it-they want awareness because that is all that is going to help them and get them through the challenges the disease presents.  
It appears with this decision you may have forgotten the nature of the business you are in.You help people.  You are about people.  This policy impacted what had otherwise thus far been a rewarding experience. It seemed it was all about the risks, the kidney and not about the person.   I hope you were able to mitigate whatever your risks were that you were trying so desperately to protect-at least one of us would then have been successful.  I hope in the coming months or years your legal and communications teams will think a little more about  the fact that in 2011, you can't really have iron-fisted control of the information shared over the web. It's much more productive to work with online channels and communities than against them.  (Incidentally, when I was trying to find more information online about your media policy for donors I found your press release on how social media is a wonderful tool for awareness-it was quite ironic and amusing). I challenge you to come up with a policy that balances the need for a degree of identity protection while still allowing people to have a voice. Develop guidelines that is sustainable and realistic that give people fact to help them but also give them choice..

Mostly though I wanted to give you the opportunity to understand where a national policy may have been a little short sighted and perhaps too little too late. And how, at the end of the day you really defeated a donor who was just trying to help, who believed in the program and what it was trying to do. I was cut off from an outlet to express myself and was prevented from communicating with my family and friends in a way that had been highly successful and rewarding.

If you were a business that sold something, I 'm not sure I'd want to be your customer anymore-I'd take my business elsewhere. Unfortunately how yoPublish Postu opt to run your organization is not the fault of the many patients who rely on you. I can't  just "not donate" my kidney, not promote organ donation or encourage people to donate blood because of a short sighted policy. In the end none of us really are ahead which is too bad.

Sincerely,

A potential kidney donor

5 comments:

  1. Excellent! Let's hope whoever it was that pointed to the blog and put the kibosh on the media coverage reads this and that it leads to CBS's rethinking.

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  2. Great points Lauren - I just din't get why they stopped you - you are such a good spokesperson for kidney donation. Can't wait to read more!

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  3. I love your letter! I am a potential non-directed donor in Alberta (possible donation in the next couple months) and was frustrated by the lack of Canadian blogs. I was hoping to write about my experience, but when I asked back in December, I was shut down entirely before I started. I am so looking forward to reading the rest of your posts, so thank you!

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  4. Good letter... I just finished my donation as a non-directed kidney donor in Ontario with Canadian Blood Services, and I have been blogging through the whole thing. I never asked about a blog, and no one ever mentioned anything to me about not blogging or contacting the media or anything, so I didn't know it was against the rules!!!
    http://anundesignateddonor.blogspot.ca/2011/12/making-call.html

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  5. Hi Carol - I have since learned that CBS is not against blogging per say....however it is a grey area that the hospital may have mis-interpreted. Again, another learning experience for everyone!

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