When did the NKF become the National Transplant Foundation?

[Chris]

Wow, you really have to dig through the NKF website to find those booklets. I searched directly for the one entitled Getting Ready for a "New Normal" and found it here http://www.kidney.org/professionals/KLS/anewnormal.cfm
Why would they only put them in the professional section?? Once again, dialysis patients are deemed incapable of gathering info.
When I tried to backtrack and figure out where to access this directly, I see that most information from the Kidney Learning Solutions (KLS) is directed at medical professionals, and not offered to patients.

Home > Professionals > Kidney Learning Solutions

Getting Ready for a "New Normal"
A “New Normal”: Life on Dialysis - The First 90 Days Stage 5
You can receive first order complimentary (up to 5 copies), additional copies are $3.00 each.

I finally found the booklets in Professional Education: Dialysis - http://www.kidney.org/members/source/catalog/index.cfm?section=unknown&task=2&CATEGORY=P&SUBCATEGORY=Dialysis

"Your Treatment, Your Choice" is available free to Physicians, Advanced Practice Nurses, Physician Assistants and Clinical Nurse Specialists. http://www.kidney.org/professionals/KLS/YTYC.cfm

  If you're not a pro, do not order.

Those books sound familar. I think the NKF gave me those books so they didn't have to bring them back. I will have to look.

[Meinuk]

Karol, thanks for doing all the digging.  I spent a lot of time just trying to figure out why they have their website the way it is, and gave up. It is a very bad design.

Chris, that is what I am afraid of, there are bunches of books around the country "somewhere" in someone's house/car/storage room....

There should be a prominent "Publications" link on the main page of the website..... But dialysis should also be mentioned on the home page.... sigh.

[Meinuk]

Well, I got a lightning fast response!:

I guess that e-mail is now out of the question....  I'll take notes during my conversation.

Dear Ms. Bennett -
I am more than happy to further discuss your concerns - please feel free to give me a call
Tracy Fortson
Managing Director, Constituent Services
National Kidney Foundation
30 East 33rd Street
New York, NY 10016

Be an advocate for yourself and others affected by chronic kidney disease, donation and transplantation by joining the National Kidney Foundation's "People Like Us" empowerment movement - www.nkfpeoplelikeus.org

My Response:

Dear Ms. Fortson,

Thank you for your prompt reply.  I will call you Thursday morning.

Until then, may I point out that your e-mail signature quote is also a bit transplant oriented.

Be an advocate for yourself and others affected by chronic kidney disease, donation and transplantation by joining the National Kidney Foundation's "People Like Us" empowerment movement - www.nkfpeoplelikeus.org

Might I suggest:

Be an advocate for yourself and others living with and affected by chronic kidney disease by joining the National Kidney Foundation's "People Like Us"....

Best,

Anna Bennett

Another prompt response:

Ms. Bennett - I can be reached between 10:30 am and 12:30 pm on Thursday.
Thank you for your suggestion regarding my electronic signature.  My signature is inclusive of ALL communities/constituencies that the NKF serves, which includes people with chronic kidney disease in all stages, transplant candidates and recipients, donor family members and living and potential donors.  We advocate for all of our constituencies.
I look forward to speaking with you on Thursday.
Tracy

My Reply:

Thank you.  It may seem that I am being a semanticist, but please understand that words matter.  As I said in my initial e-mail, I see the change that has come over the NKF, and it worries me. It is these subtleties that become the norm, and a whole population is swept under the carpet.  Even looking at your explanation of your signature, you are mentioning one treatment option.  My suggestion did not single out just one option.

I'll stop now.  We can discuss it further tomorrow.  I am not trying to sound confrontational, I believe in the NKF - I just think that it is a little unbalanced.

Best,

Anna

[cariad]

Well done, Anna! I like your writing, and I also like that you tried to explain to her why the details matter. I think it takes a long time for people who are not on the wrong end of these words to understand why the way statements are phrased can make a huge difference between inclusive and welcoming or divisive and marginalizing. I look forward to reading the minutes from your conversation. Good luck.

[Meinuk]

Well, I just got off the phone with Tracey Fortson.

She was nice, not defensive, agreed with me on a couple of points, and will get back to me about my question RE: Board Members currently on dialysis.

I was told that the website is reviewed by patients and is an ever changing entity. (I want it to change)

I mentioned that the pamphlets are buried and suggested a publications page.

I mentioned that the response e-mail from the electronic newsletter did not seem to work (no response in over a month), but the web interface did.

She is unaware of anyone with CKD working for the NKF National (I was told that it would be a privacy violation to "out" anyone).  My response was "Wouldn't you want someone working for the NKF that was also living with CKD?  Like the hair club for men, 'I'm not just the President, I am a member'."

I mentioned that transplant is often held out as the golden opportunity.  Grizz Chapman (from 30 Rock) is a great example.  He is spending so much effort promoting transplant, yet he is living on dialysis as he is ineligible for transplant (high BMI). Wouldn't it have been GREAT if he had shown that he was working while on Dialysis on the show, rather than a strange Alan Alda "Transplant Now!" episode?

I also mentioned the Halo effect, and how it would be amazing for the NKF to have a static resource for people living on dialysis. A place for success stories, a place for hope - links to stories like Zach's or Kit Katz or Bill Peckham or Jean Louis Clemendot or any of the THOUSANDS of stories out there.

Oh, and I told her I'll be writing about this.....

[okarol]

  So glad you're seeing this through Meinuk!
Change is needed, has been for some time now! 

[Bill Peckham]

It's funny that when you listen to the podcast Zach linked to and I blogged about, the transplant advocacy community is convinced that the NKF sold out transplant patients because of the NKF's deep dialysis bias.

[Lillupie]

I searched around looking for more info about financial aid for kidney patients, and finally found this 2008 FReport from the NKF of Washington DC on NKF's website: The Patient Emergency Fund - In the past year, the NKF Patient Emergency Fund distributed nearly $25,000 to Washington, DC area dialysis and pre- and post-transplant patients. Patients needing assistance must request funds from their unit social worker. Once, the social worker approves the patient's request, it then goes to the Patient Emergency Fund coordinator for approval and a request is made for payment from NKF. For additional information about our programs and patient services, contact Cherie Carroll, Vice President of Medical Initatives at (202) 244-7900 ext. 20.  Has anyone heard of anyone getting help from this fund anywhere else in the US?

Yes, as a matter of fact there are people at my dialysis center (according to my head nurse) that they do pay for people to have insurance. She says that people have been given a $100 check for a medication that their insurance does not cover,  and also according to my social worker they (or the National Kidney Fund) does pay the insurance for patients who does not have insurance so they can get listed on the transplant list. Where I go, they that particular hospital will not list you if you have medicaid.


Lisa

[Meinuk]

I think that with the NKF being the "Granddaddy" of all CKD organizations (when I looked at their 2007 IRS 990, they had gross receipts of over $43,000,000 for that year - Grandpa is RICH) Everybody expects a piece of the pie.  I haven't listened to the podcast (there is only so much time in the day)

Lisa, thanks for the info.  I have heard about the program, but don't see it advertised or outlined anywhere. If anyone finds anything on it, please post here - people need to know that there are options out there.

Someone once sent this to me:

"Institutions will try to preserve the problem to which they are the solution." -- Clay Shirky

http://www.kk.org/thetechnium/archives/2010/04/the_shirky_prin.php

I am starting to believe that.

I don't anticipate much follow up with the NKF for the next couple of weeks, but I'll check in with Tracey and when I do, I'll update here.  They did
fix the response e-mail address on their e-newsletter.  But the home page is still all about transplant.