Congressional Kidney Caucus
The bipartisan Congressional Kidney Caucus was founded by Representatives Jim McDermott (D-WA) and Mark Kirk (R-IL) in March, 2002. The purpose of the caucus is to educate Members of Congress and the public about the problem kidney disease poses for our society and to educate Members of Congress and the public about the federal government’s singular role in providing access to life sustaining treatment for those Americans with the severest form of Chronic Kidney Disease (CKD), stage 5 CKD.
If your Representative is not on the Congressional Kidney Caucus, contact them today and ask them to become a member. You can find contact information for your Representative here.
MEMBERS (113th Congress):
Tom Marino (R-PA), Co-Chair
Jim McDermott (D-WA), Co-Chair
Spencer Bachus (R-AL)
Tammy Baldwin (D-WI)
Xavier Becerra (D-CA)
Gus Bilirakis (R-FL)
Madeleine Bordallo (D-GU)
Bruce Braley (D-IA)
Corrine Brown (D-FL)
Dave Camp (R-MI)
Shelley Capito (R-MI)
Michael Capuano (D-MA)
Bill Cassidy (R-LA)
Donna Christian-Christensen (D-VI)
William Lacy Clay (D-MO)
Steve Cohen (D-TN)
Mike Conaway (R-TX)
Gerald Connolly (D-VA)
John Conyers (D-MI)
Elijah Cummings (D-MD)
Susan Davis (D-CA)
Lloyd Doggett (D-TX)
John J. Duncan, Jr. (R-TN)
John Fleming M.D. (R-LA)
Raul Grijalva (D-AZ)
Brian Higgins (D-NY)
Jim Himes (D-CT)
Steve Israel (D-NY)
Sheila Jackson-Lee (D-TX)
Sam Johnson (R-TX)
Walter B. Jones (R-NC)
Barbara Lee (D-CA)
John Lewis (D-GA)
Doug Lamborn (R-CO)
Dan Lipinski (D-IL)
Dave Loebsack (D-IA)
Ed Markey (D-MA)
David McKinley (R-WV)
Jim Moran (D-VA)
Richard Neal (D-MA)
David Price (D-NC)
Charles Rangel (D-NY)
Tim Ryan (D-OH)
Adam Schiff (D-CA)
Steve Scalise (R-LA)
Jan Schakowsky (D-IL)
Adam Smith (D-WA)
Lee Terry (R-NE)
Bennie Thompson (D-MS)
Michael Turner (R-OH)
Chris Van Hollen (D-MD)
Pete Visclosky (D-IN)
Joe Wilson (R-SC)
Rob Wittman (R-VA)
updated March 2013
Advocacy in Action 
We need help with the cost of medications!! It is so helpful with the Medicare Part D, but even after mine is paid my co-pay is still $1,500 per month. We are going down the drain and can’t sustain those kinds of costs for meds. If I don’t take the meds I will die, if we keep paying we will be broke. At the present time I have HIRSP (Health Insurance Risk Sharing Program) here in Wisconsin who backs up my meds. The insurance is expensive but without it we will go under. They are talking about the fact with this change in insurance/medicare this program might be scrapped. What can be done to help? I know there are many many people in the same situation that I am in. I am a kidney transplant recepient 21 years 9 months out. Thanks, Judi Pulaski, Kendall, WI
I beg all of you that have the power to change or do something about the real need for kidneys and funding for treatment of ESRD. My son had just turned 19 when we found out he had Alports Syndrome. He had missed the cut of date by 2.5 weeks for the adolescent list. He is now faced with a 7-10 year wait because of that cut off date. My son has had a very emotional hard time dealing with this. My son Eric is fifth stage, I cannot loose my son. Imagine to our despair being told the difference between life and death for my son was a window of 2.5 weeks. I cry daily.
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
I don’t need an economist to explain that we’re an aging society and cost is going to rise without making tough choices. I am positive that we can save a lot of money by reducing my health benefits and enabling discriminatory practices that will make the strongest person in our society weak when viewed through our cost microscope. I also know the answer I was given during the healthcare debate: ‘when you run out of resources you will die’. Now, as the debate is focused on Medicare, it seems like we’re going to reduce the resources that are available to our weakest one penny at a time.
HITLER COULDN’T PROPOSE A BETTER STRATEGY!
Please show me that we aren’t becoming what we claim to hate.
I have been a member of the National Kidney Foundation Since I contacted Kidney disease. I went thru the Dialysis stage for about 3.5 years and then received a transplant June 30th of 2012. I was 75-years old when I received the transplant. Based on the information I have just written I don’t believe that Medicare would stop sharing in the cost of immunosuppressant drugs 36-months after transplant. Does anyone know if this is correct? I totally disagree with the Medicare policy of sharing in the cost for immunosuppressant drugs for only 36-months after transplant for people under the age of 65 or people on Medicare Disability. What are these people suppose to do if they can no longer afford the cost of these drugs without Medicare’s help. These people would eventually loose there transplanted Kidney. Then what? Well there choice would be to return to Dialysis for the rest of their life. Therefore Medicare would once again be paying for the cost of Dialysis for these people. In reference to Medicare which would be the lesser cost to them, to share in the drug cost or pay for these people to return to Dialysis? To me this would be a no brainer. The drugs sharing cost would obviously the lesser cost for Medicare. If anyone would like to respond to what I have stated here please feel free to do so.
Where is the research data on artificial kidneys and stem cell treatment for kidney disease?
I believe we should focus on cures rather than maintaining a system that needs revamping.
Tom
The research you mention is a work in progress. However the issue mentioned here by the NKF still exists. If the research finally develops a cure for Kidney Disease it would need to be tested and approved by FDA. You may be looking at years down the road before this happens. Meanwhile you have thousands of Kidney transplanted patients becoming responsible totally for the cost of the required immunosuppressant drugs they are taking. The life of the transplanted Kidney depends on these drugs. The drugs are very expensive and most people probally could not afford them on their own. 36-months from the date of transplant Medicare no longer assists with the payment for these drugs. A transplanted kidney patient would be looking at $1,500 to $2,000 per month for these drugs. At this point the kidney patient has 2-choices, either go back on Dialysis or death. The cost to maintain a person on Dialysis for a year is almost $100,000. The cost to Medicare for providing assistance with the cost of these drugs would be about $25,000. This makes an even better case for extending Medicares assistance in the cost of these drugs beyond 36-months to the life of the transplanted Kidney.
Our son has been on dialysis for over 9 years, and we are aware of the ridiculous costs. The FDA’s agenda regarding research and actual treatments that provide cures and healing is not their focus.
They serve the whims of the drug lords and health care industry. The treatments and research are closer than the public realizes yet we are held captive by the FDA. UCSF is part of an international research project to develop an artificial kidney that would at least reduce one’s time on dialysis.
China, France and even some South American countries are more advanced than the US in this area.
By the way, who exactly does the NKF represent?
Tom
The NFK represents any and all Kidney disease patients who wish to be a part of NFK. There also is the AAKP(American Assoc. of Kidney Diaease Patients). I will mention one experiment that has been in progress for about 5-years now. A woman nephrologist on the East Coast has developed a new method of transplant. Along with the transplanted kidney they also transplant bone marrow from the same person they acquired tha kidney. By doing this the body does not try to reject the transplanted kidney therefore no Immunosuppressant drugs are necessary. They are currently seeking FDA approval to take this modality from the experimental stage to the comman stage for kidney transplants. Hope this is helpful to you.
My son had been on dialysis for 6 years. Last month he had a transplant ( his brother was his donor). He is 25. Already , his life and health is much better. There are risks and concerns. I don’t understand what Medicare would rather pay dialysis fees ad infinitum than pay for the post transplant drugs. We took that risk and hopefully , 3. Years down the line things will have changed. Right now , he is in a clinical study that will see if one ( with good kidney donor and other factors ) can bee WEANED from the immunosuppressants . We can only hope and pray. The government needs to look at numbers , as one commenter said……hmmmm, 100k or 25k……
In reply to your previous response; Stanford Un was conducting research on using donor stem cells with the kidney patient so the body would interpret the organ as natural. The problem was the patient had to find the matching donor. This was two years ago and I have not heard of any progress on their research. In 2005, a nephrologist in Milan started experimentation with stem cells injections to regenerate kidneys and felt he could start the treatment for humans within five years. The difficulty for Americans is current medical breakthroughs that threaten Big Pharma are suppressed in this country(ex: vaccine that increased autism in Italy that was leaked via facebook and youtube).
So if the foundation has anything viable that actually benefits patients, let me know. If we are successful in our intended endeavor to pursue overseas treatments, we will post the results of our findings for the nation to see.
i was a kidney transplant of 22 years and 9 months just went back on hemodialysis i got medicade now till jan. 01 2014 then medicade will not pay for any medication plus i pay medicare and apart d and a plan pay 20% all that cost leave me almost nothing.. my last month bill was over $ 105,150.00 for dialysis. my kidney medication run almost a $ 1000.00 a montm plus my 5 other pill what are kidney patient to do when they do not have any thing
It still appears that the best options are not in this country but overseas.
Will be checking into Singapore and France next regarding research and treatment in those countries.