Bay Area Association of Kidney Patients

Educating & Supporting Bay Area Kidney Patients

Kidney friends: What messages do you want me to take to Capitol Hill on May 1st?

Hi BAAKP folks,

What are your concerns?

I'm Representing People with PKD on Capitol Hill May 1, 2014.  This will be my 2nd trip, the first was in 2012 for NKF.  Join me in support of the passage of The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013, bill numbers S. 323 and H.R. 1428 as much as I do?  This is a key issue for me as a transplant recipient.  But there are thousands of us who will be helped by this legislation now and in the future. 

Another concern is access to customized, tailored immunosuppressant regimens not be restricted.  The win a few weeks ago is only temporary.  When you read the actual letter it will definitely be revisited in a few months.  Why?  Why would any of us want a bureaucracy to dictate which medicines our doctors have access to in order to keep our grafts healthy?

Then there is advocacy for kidney research dollars.

What about the ability of our nephrologists to get patients waitlisted before succumbing to dialysis.  I have met so many people who think they are active on the UNOS waitlist when in fact they are not.

What are your concerns?


Shar Carlyle


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Comment by tuhumom on October 22, 2014 at 10:10pm

Very interesting discussion.  As a former kidney disease sufferer, I know how frustrating it can be to find answers.  Just wanted to share a link that helped me out a lot when I was struggling to get better:

Best of luck to everyone!


Comment by Linda Umbach on April 6, 2014 at 9:08pm

I am concerned with all of your topics.  Two questions; with the new UNOS regulations to go into effect in the Fall of 2014, is it true that you cannot be listed for a transplant until you've been on dialysis?

The second question has to do with the new ACA and the coverage of transplant medications after the 3 year period.   People ask me and I don't know the answers.  

What do you all think?

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