Comments for Advocacy in Action

Comment on Congressional Kidney Caucus by Robin W. Rossi

Robin W. Rossi — Tue, 07 May 2013 17:37:07 +0000

Congress needs to act extending Medicare coverage after the 36 month cut off after a transplant. I don’t understand WHY Medicare would pay the thousands of dollars per month for dialysis ( for the life of the patient ) rather than extend prescription coverage after a life changing transplant !
My son is 24 and has been on dialysis for 5 years. We missed out on a transplant 2 years ago . He is currently being evaluated at another center, we have our living donor whois a match ( his brother ), but it seems that the main hindrance from this center is whether he CAN AFFORD the post transplant meds 3 years from now !!! He does not have secondary coverage from his job because of his pre-existing condition.
What a conundrum !!!
Please act on changing the lives of kidney patients everywhere !
Thanks !
A concerned mother in Arlington, Virginia

Comment on Immunosuppressive Drug Coverage for Kidney Recipients by nkf _advocacy

nkf _advocacy — Thu, 02 May 2013 14:25:10 +0000

Hi Kristy, We do have some financial resources on our web site that you may wish to look into and as Joan mentioned, most of the drug companies have prescription assistance programs. You can find all that information on our web site: http://www.kidney.org/transplantation/transaction/financialresources.cfm - Erin, NKF

Comment on Immunosuppressive Drug Coverage for Kidney Recipients by Joan Waddell

Joan Waddell — Thu, 02 May 2013 01:42:22 +0000

Call the National Kidney Foundation in New York for resourcing your husband’s anti rejection rxs,etc.-Ask about a list to resource medical for your husband. Also call the mfg of each drug needed & apply for assistance with each drug mfg. There is alot of resourcing to do ahead of time since you know this. Also tell his Drs offices & ask for a social worker to assist in all your needs. You are not throwing $800 month down the drain, this is end of life medication for your husband. It is important that your husband learns to become his own advocate in researching & resourcing his medical needs. There is alot of options to get all medications but you have to resource it.

Best Wishes

Kidney Transplant
Dec.11, 1974

Comment on Immunosuppressive Drug Coverage for Kidney Recipients by Kristy An Ferracci

Kristy An Ferracci — Sun, 28 Apr 2013 13:20:59 +0000

I met my husband when he was on dialysis and I was his PCT. We got married in Sept 2006 and i got tested to see if I was a match. On March 8, 2007 we had the transplant surgery. It has been 6yrs and in that 6yrs my husband was able to go back to college and earn his bachlor degree in Social Work. He started working after he graduated. He found a new job with better money and hours but his insurance will not kick in until July 1, 2013. So for 2 and a half months he will not have health insurance with presription coverage. In that 2.5months could be thrown down the drain cause of us not being able to pay $800. a month for his 1 anti-rejection med. How can I encourge transplant to my patients if I know what I have gone through. I have always been told transplant is not a cure just another form of treatment. I wish they would pay for the life of the organ meds.

Comment on Books, Films, Music by nkf _advocacy

nkf _advocacy — Thu, 25 Apr 2013 16:07:30 +0000

Hi Mary, I believe you can find it on http://www.amazon.com

Good luck!
- Erin at NKF

Comment on Books, Films, Music by Mary Guillory

Mary Guillory — Thu, 25 Apr 2013 07:49:53 +0000

How can I buy this book??

Comment on Immunosuppressive Drug Coverage for Kidney Recipients by nkf _advocacy

nkf _advocacy — Wed, 10 Apr 2013 14:45:08 +0000

Hi ShaRonda, Thank you for your efforts! The National Kidney Foundation headquarters office does not have a petition sheet, however you can try contacting the local NKF office in Michigan to see if they have anything you can share:

NKF of Michigan, Inc.
Address: 1169 Oak Valley Dr
City: Ann Arbor
State: MI
Zip: 48108-9674
Phone: (734) 222-9800
Toll Free: (800) 482-1455
E-mail: info@nkfm.org
Web Site: http://www.nkfm.org

Comment on Immunosuppressive Drug Coverage for Kidney Recipients by Cathy SerrenhoSmith

Cathy SerrenhoSmith — Tue, 02 Apr 2013 15:35:37 +0000

My daughter has been on dialysis for 11 years waiting for a kidney, we have small fund raisers every year, Kidneyfor Amber.org visit her sight and read her blog, She is so worried about the cost.

Comment on Immunosuppressive Drug Coverage for Kidney Recipients by ShaRonda N. Walker

ShaRonda N. Walker — Tue, 02 Apr 2013 00:06:25 +0000

Dear NKF I was wondering if there is an official Michigan petition sheet you could email me that I can take around to have people sign that may not have access to internet and do not know about this plea for help. I would like to get signatures and send them in to the individuals in Michigan government as I see they have not currently elected to support this movement. Thank you.

Comment on Immunosuppressive Drug Coverage for Kidney Recipients by Verna Narzekalski

Verna Narzekalski — Sun, 31 Mar 2013 07:26:23 +0000

Please, Please sign this bill. I just had transplant 6 months ago after 9 years of waiting. Without this bill I will not be able to afford anti-rejection medications and will have to go back to dialysis. Thank you for your help!