Help kidney transplant recipients maintain their life-saving kidney transplant by contacting your Representative and Senators to ask them to support Medicare’s extension of immunosuppressive drug coverage through our ADVOCACY ACTION CENTER!
Sens. Richard Durbin (D-IL) and Thad Cochran (R-MS) introduced S. 323 on February 13, 2013, to extend Medicare coverage of immunosuppressive drugs for kidney transplant recipients. Medicare covers dialysis for most Americans, regardless of their age, with no time limit. However, if they are under age 65 or are not Medicare-disabled (receiving Social Security Disability Income), their eligibility ends 36 months after receiving a transplant. S. 323 eliminates the 36 month time limit to provide continued Medicare coverage for life-saving immunosuppressive medications. All other Medicare would end after three years for kidney recipients, as under current law.
Click here to contact your Senators and urge them to cosponsor S. 323 to help transplant recipients access the medications they need to maintain their new kidney.
- Blumenthal, Richard [D-CT]
- Blunt, Roy [R-MO]
- Boxer, Barbara [D-CA]
- Brown, Sherrod [D-OH]
- Cochran, Thad [R-MS]
- Gillibrand, Kirsten [D-NY]
- Hagan, Kay [D-NC]
- Harkin, Thomas “Tom” [D-IA]
- King, Angus [I-ME]
- Landrieu, Mary [D-LA]
- Menéndez, Robert “Bob” [D-NJ]
- Schumer, Charles [D-NY]
- Shaheen, Jeanne [D-NH]
- Tester, Jon [D-MT]
- Udall, Tom [D-NM]
- Warren, Elizabeth [D-MA]
- Whitehouse, Sheldon [D-RI]
- Wicker, Roger [R-MS]
Rep. Michael Burgess (R-TX26) and Rep. Ron Kind (D-WI13) introduced H.R. 1428
to amend title XVIII of the Social Security Act to provide Medicare entitlement to immunosuppressive drugs for kidney transplant recipients. This bill would extend Medicare’s coverage of anti-rejection drugs for kidney transplant recipients (who are not Medicare-aged or Medicare-disabled) for the life of the transplant, versus the 36 months post-transplant that Medicare currently covers.
Click here to contact your Representative and urge them to cosponsor H.R.1428 to help transplant recipients access the medications they need to maintain their new kidney.
- Bachmann, Michele [R-MN6]
- Bachus, Spencer [R-AL6]
- Barletta, Lou [R-PA11]
- Barton, Joe [R-TX6]
- Benishek, Dan [R-MI1]
- Bishop, Sanford [D-GA2]
- Blackburn, Marsha [R-TN7]
- Blumenauer, Earl [D-OR3]
- Bonner, Jo [R-AL1]
- Braley, Bruce [D-IA1]
- Butterfield, George “G.K.” [D-NC1]
- Capito, Shelley [R-WV2]
- Capps, Lois [D-CA24]
- Capuano, Michael [D-MA7]
- Carson, André [D-IN7]
- Cartwright, Matthew [D-PA17]
- Cassidy, Bill [R-LA6]
- Castor, Kathy [D-FL14]
- Castro, Joaquin [D-TX20]
- Cicilline, David [D-RI1]
- Clarke, Yvette [D-NY9]
- Clay, Lacy [D-MO1]
- Coffman, Mike [R-CO6]
- Cohen, Steve [D-TN9]
- Connolly, Gerald [D-VA11]
- Conyers, John [D-MI13]
- Cooper, Jim [D-TN5]
- Costa, Jim [D-CA16]
- Courtney, Joe [D-CT2]
- Crenshaw, Ander [R-FL4]
- Cummings, Elijah [D-MD7]
- Davis, Danny [D-IL7]
- DeGette, Diana [D-CO1]
- Deutch, Theodore [D-FL21]
- Davis, Susan [D-CA53]
- Ellison, Keith [D-MN5]
- Ellmers, Renee [R-NC2]
- Eshoo, Anna [D-CA18]
- Esty, Elizabeth [D-CT5]
- Fitzpatrick, Michael [R-PA8]
- Garcia, Joe [D-FL26]
- Gerlach, Jim [R-PA6]
- Gibson, Christopher [R-NY19]
- Gosar, Paul [R-AZ4]
- Griffin, Tim [R-AR2]
- Griffith, Morgan [R-VA9]
- Grijalva, Raúl [D-AZ3]
- Grimm, Michael [R-NY11]
- Guthrie, Brett [R-KY2]
- Harper, Gregg [R-MS3]
- Hastings, Alcee [D-FL20]
- Herrera Beutler, Jaime [R-WA3]
- Himes, James [D-CT4]
- Holt, Rush [D-NJ12]
- Huffman, Jared [D-CA2]
- Hurt, Robert [R-VA5]
- Israel, Steve [D-NY3]
- Jackson Lee, Sheila [D-TX18]
- Johnson, Bill [R-OH6]
- Johnson, Henry “Hank” [D-GA4]
- Jolly, David [R-FL13]
- Joyce, David [R-OH14]
- Latham, Tom [R-IA3]
- Lee, Barbara [D-CA13]
- Levin, Sander [D-MI9]
- Lewis, John [D-GA5]
- Lipinski, Daniel [D-IL3]
- Loebsack, David [D-IA2]
- Lofgren, Zoe [D-CA19]
- Lowey, Nita [D-NY17]
- Luetkemeyer, Blaine [R-MO3]
- Marchant, Kenny [R-TX24]
- Marino, Tom [R-PA10]
- McCollum, Betty [D-MN4]
- McDermott, Jim [D-WA7]
- McGovern, James “Jim” [D-MA2]
- McKinley, David [R-WV1]
- Meehan, Patrick [R-PA7]
- Meeks, Gregory [D-NY5]
- Michaud, Michael [D-ME2]
- Miller, Candice [R-MI10]
- Moore, Gwen [D-WI4]
- Moran, James “Jim” [D-VA8]
- Murphy, Tim [R-PA18]
- Negrete McLeod, Gloria [D-CA35]
- Owens, William [D-NY21]
- Palazzo, Steven [R-MS4]
- Payne, Donald [D-NJ10]
- Peters, Gary [D-MI14]
- Peterson, Collin [D-MN7]
- Pingree, Chellie [D-ME1]
- Posey, Bill [R-FL8]
- Price, David [D-NC4]
- Quigley, Mike [D-IL5]
- Radel, Trey [R-FL19]
- Rangel, Charles [D-NY13]
- Richmond, Cedric [D-LA2]
- Roby, Martha [R-AL2]
- Roybal-Allard, Lucille [D-CA40]
- Runyan, Jon [R-NJ3]
- Ruppersberger, A. Dutch [D-MD2]
- Schakowsky, Janice “Jan” [D-IL9]
- Schiff, Adam [D-CA28]
- Schneider, Bradley [D-IL10]
- Schock, Aaron [R-IL18]
- Schwartz, Allyson [D-PA13]
- Scott, David [D-GA13]
- Shea-Porter, Carol [D-NH1]
- Smith, Adam [D-WA9]
- Smith, Christopher “Chris” [R-NJ4]
- Speier, Jackie [D-CA14]
- Swalwell, Eric [D-CA15]
- Takano, Mark [D-CA41]
- Thompson, Mike [D-CA5]
- Tiberi, Patrick “Pat” [R-OH12]
- Tierney, John [D-MA6]
- Tonko, Paul [D-NY20]
- Valadao, David [R-CA21]
- Van Hollen, Chris [D-MD8]
- Webster, Daniel [R-FL10]
- Whitfield, Ed [R-KY1]
- Wittman, Robert [R-VA1]
- Wolf, Frank [R-VA10]
- Young, W. Bill [R-FL13]
NKF Government Relations Office
5335 Wisconsin Ave, NW, Suite 300 • Washington, D.C. 20015
(202) 244-7900 • www.kidney.org
Why would anyone in our Government not support this bill? To be so callous as to force someone unable to pay for their medications to go back on dialysis and lose the “Gift of Life” they have received is unconscionable! Please vote YES on this bill and save countless people from the rigors and emotional trauma of dialysis and let them enjoy their “GiFT”
Please. I just got a Transplant 9 months ago after waiting 6 years.I need you to vote YES on this bill to keep those who have Transplants, and those waiting to get Transplants. Dialysis is torture!
PleaseDon’t let us lose Our Gift Of Life, Thank you & God Bless, Debbie Kustka
I filled out the form but the page went out after I finished adding my comments. Please check that this page is functioning. Thank You, Joanie Waddell
Hi Joanie, Thank you for your comment. We are currently updating the Take Action Network and will soon send an alert out to our subscribers to encourage them to complete the form to contact their Members of Congress. Thank you. – Erin, NKF
When should I try later? Thank You so much for such a quick response. This is very shocking to me and I want to help all I can.
We should have everything ready – including an action alert emailed to our subscribers – by Tuesday, March 26. Thank you for your patience.
Hi Joanie, Our action alert for the Immuno Bill was just sent out. You can find it here: https://secure2.convio.net/nkf/site/Advocacy?cmd=display&page=UserAction&id=115&JServSessionIdr004=msojygokeb.app246b
Please go to National Kidney Foundation and read about this bill to let us keep our drugs for a sucessful Kidney Transplant to work. God Bless
Pingback: Help kidney transplant recipients by contacting your U.S. Representative! | Advocacy in Action
My son is on dialysis and dreads every treatment. Through no fault of his, he’s now awaiting a third kidney transplant. I can’t imagine losing that precious gift when it comes, through an inability to pay for those prohibitively expensive, and vital medications.
Please support and pass this bill, I have a son who has had 2 transplants and needs the Immunosuppressive drugs to keep his kidney! he is very fortunate to have a good medical program, but is locked in to the employment, he would like to leave but first must consider if the new employer has the health care that would support his medical. If this program was passed then it would not be a fear if he quit or lost his job. Thanks Mr. Loebsack.
My daughter will not have a kidney transplant because she wouldn’t be able to pay for the medicine and if medicare won’t pay she would then have to go back on dialysis if she lost a new kidney. What a waste of money. I would think the government would rather help pay for the medicine after a transplant then to continue to pay about $80,000 a month for her dialysis which is what it runs in South Florida! Come one lets be logical about this! But I don’t think the government thinks logical about a lot of things.
For all who are already suporting this bill God Bless you , for those who havent please do the math on paying for dialysis verces ant-rejection meds!
My daughter (27) has been on dialysis for only two and a half years. She is waiting to get a kidney. The drugs she will need after transplant are a concern to her. If medicare will pay for the drugs for the rest of her life which is the amount of time these patients have to take these drugs it would be a blessing to them, and to her.
Please Vote Yes on this Bill. God Bless
why would someone like myself, who has donated a kidney, even consider giving their kidney if they knew it might all be for nothing. People need to know that the gift they willing give can continue to give someone a healthy life. Our government wastes so much money on perks.That
money alone could take the burden off so many families. We are talking about a human life. Let’s get our priorities in line!
I have a kidney transplant and had to spent longer on dialysis to wait until I could earn the work quarters to qualify for Medicare. Medicare should certainly be available to those needing it and one should not be dependent on an employer health plan to be able to access anti-rejection meds.
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!
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.
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
Phone: (734) 222-9800
Toll Free: (800) 482-1455
Web Site: http://www.nkfm.org
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.
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.
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
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.
My very brave daughter donated her kidney to me one week before her 21st birthday on 12/29/09.
For several years prior to my transplant date, throughout her teen years, she had witnessed, first-hand, my many hospitalizations and complications due to my renal failure. She witnessed at her young age my tears as I headed off to dialysis. She heard many times my wishes to die rather than live on a machine. My daughter stepped up on that December day in 2009 and gave me my life back.
Just last week I learned that my anti-rejection drugs are no longer being covered being covered by Medicare. I learned this after questioning a bill I received from CVS Caremark. I was told I should have known these drugs were only covered for three years after the transplant. I had no notification from Medicare, or CVS, that my life-dependent drugs were no longer being paid for by
Medicare, effective 12/20/2012, and unless a past due balance of approximately $550.00 was paid
CVS would not ship my monthly supply. So, I am left without the drugs that will sustain my life.
How do I explain to my daughter that all that she went through was only to see me back on dialysis? Does it make any sense for people willing to donate to people like me, do it for nothing?
Please step up and say YES on this bill like my daughter and thousands of others step up and say
YES to giving their Gifts of Life.
I have had my transplanted kidney for over 21 years. I am one of the fortunate ones with good insurance and now Medicare. Please guarantee payment for needed immunsuppressant drugs for recipients as a normal life is very precious.
Pingback: August: A Great Time to Advocate for Better Kidney Care! | Advocacy in Action
Pingback: An Update on Legislation for Immunosuppressive Drugs | Advocacy in Action
My family suffers from PKD. I lost several generations of family due to this rare, genetic disease that affects 600,000 in the US and 12 million worldwide. Our only hope is a Transplant right now. We are fairly young sector of the kidney world, as this is when the disease strikes and many folks loose all function of then. So we are the ones under 65 and don’t qualify for Medicare otherwise. I have been so blessed to have my second transplant for 1 year and 5 months. Life has been so awesome these days!!
I was told it would take me 10 years to get a match. I have been fortunate to receive a kidney from my brother in 2010, which only lasted 6 months, and a second one from a donor that they anticipate should last me the rest of my life! I was on Dialysis for 4 years, but it wasn’t the best way to live, it was basically survival. The Gift of a transplant is just priceless and one from God himself. We have finally achieved a terrific success rate with transplants, the right immunosuppressant drugs to help keep them, and the expertise of doctors to perform these wonderful transplants. Why would we step backwards, now? We need to continue supporting the process, making more progress, keeping more folks off of the expensive dialysis system; by supporting the drug coverage to folks like us- PLEASE. It is my understanding that kidneys are the only solid organ not covered for the life of the organ, and I’m just not sure why, are you?
In this economy, with the drug and health coverage of health plans declining, and rates increasing, patients are having to pay more and more out of pocket each year. The immunosuppressant drugs are just not a drug that is affordable. I went to pay for them out of pocket due to a glitch in my current plan this year, and the drug store just not understanding the coverage, and they wanted about $1500/ month for the two drugs I need for the kidney. I am not sure who could afford this amount a month do you?
We desperately need this very expensive medicine to be covered for the life of the organ. Please help me and people like me to stay off dialysis, stay off the transplant list, and LIVE. We want to give back, we want to make a difference, and we deserve the support! Our fight has been long and difficult, and many have donated on behalf of others. It just boils down to respect for human kind and life. Transplants are treasures to be handled with care….
I was on dialysis for 2-1/2 years before I received an unexpected perfect-tissue-match kidney in July 2012 from an unknown donor. Because I was 63 at the time of my transplant, I am “grandfathered” into Medicare and will be able to continue to receive these critical medications to keep my kidney healthy. For the majority of folks who are not as fortunate as I, this legislation is not only life-saving but also cost effective. The monthly cost of dialysis and its associated costs far exceed the Medicare costs to provide these drugs to avoid rejection. This legislation should be a “no brainer” if our representatives are concerned about not only doing the right thing but also implementing laws that save taxpayers money. I am actively pressing my congressional representatives on this legislation, and I urge others to do so too.
my blessed mother donated to me her kidney unconditionally on the 1/06/2011in India, after fours years on heamodalysis, she offer her self and she brought by life back ,but by now i have no hope of reaching next year because of anti rejection medicines which are more expensive and not even available in my country south sudan, it is a problem beyond my capacity in the new born country of south sudan. if medicare could accept to help me by providing this medicines to enable me continue living in this world for the sack of God then i would be very happy and praise God..
My daughter received a kidney in June 2013 from a very wonderful selfless donor. Please pass this bill so that she will be able to continue her anti-rejection drugs and not have to return to dialysis. She was sick every day while she was on it.
Pingback: KIDNEY STORIES: HAS THE ACA EXPANDED MEDICARE’S IMMUNOSUPPRESSIVE DRUG COVERAGE FOR KIDNEY TRANSPLANT RECIPIENTS? | kidneystoriesblog
I dialyzed for 14 years before both of my daughters came forward to decide who would the best donor. As luck would have it they were both identical matches for me. So we decided to flip a coin ! My twenty-eight year old was selected over my 26-year old in this manner to be the donor. I was so fortunate to have two ‘Angels’ to come to my aid where many have none and then to be eligible for the immunosuppressant medication because of my age was a blessing when I think off all the donors and recipients who are screened for a match, have successful outcomes only to be told that they only have three years worth of Medicare B medication to prevent rejection. The medication should not be ‘blessing’ as I stated earlier, it should be standard follow-up post-op procedure no different than dialysis, or finding a donor, or transplantation, all of which have a significant element of risk. There is virtually no risk with the medication, merely finding the right combination of meds.
Seems to me that we start the pills rolling out of these life saving pharmaceutical plants, keep the organs from rejecting, then resolve the economic issues. The quality of the medications cannot be a pawn in this process or or lives could be at risk. Which pharmaceutical company will be first to demonstrate cooperation with the Federal Government AND lead the way for the others. Its name will be associated with saving lives as will the others, perhaps initially at an economic loss, but then the goodwill will be followed by gain in a win-win outcome. It’s only right. Call it IOR campaign.
I think this should be passed. I’m writing this in thoughts of my sister in law. She is on disabiability her check is $574.00 a month this is the only income her family has. She was told Friday feb 21 2014 that her medicine will cost about $10,000 a month. Let’s all pray that this is passed for all our love ones. Ct Georgia
It is so sad that there are families that have to go through diaysis whether it is themselves or those they love. Not only do they face the disease, illness or injury that caused the kidney failure but also the fear of infection and rejection of the new kidney. What have we come to as a society when we allow money to dictate whether a person can have a quality of life medically. To not provide the needed medication to maintain a quality of life for someone due to no fault of their own is just barbaric. Are we really more concerned over the money than the person. How very sad that the recipient only gets a taste of normalcy for 3 years before possibly facing that nightmare again. Lets not forget the live donor either who put themselves in harms way to help this person . Is a kidney really only financially worth three years! Why would we not do everything we could to prevent its failure. I am a donor and I am appalled that my kidney could be of no further value after 3 years because the person I helped was unable to afford the medications. That person is a hard working teacher , wife, mother of 2, my best friend and my daughter…………
I agree with many of the commenters here, particularly Celia. I am from a PKD family and am 9 years post-transplant. I have seen firsthand the suffering of family members, friends with CKD and ESRD, and clients here at Kidney Community Education. I went to Capitol Hill twice, once in 2012 with NKF and once this year (2014) with the PKD Foundation and the ASN to advocate for passage of H.R. 1428 and S. 323. Many more of us must join in this effort — whether you are Right, Left, Center, Independent, Undeclared or any combination thereof. The prognosis of the bill on govtrack moved from 0% passage to 4% passage. Folks, this is not enough to make it happen. I urge all of you to once again, contact your representatives and don’t give up! If you would like to contact me, I am Shar Carlyle, firstname.lastname@example.org, and linkedin.
Pingback: Meet with your Members of Congress | Advocacy in Action
I am realy happy to hear this good fact and hope from an experienced immunosuppressant drugs
and your comment realy gave me hope and courge to do all my best in my study.
I support this bill but want to let everyone know that there are assistance programs for post transplant patients through state prescription assistance programs, manufacturers and other resources for those transplant patients that are struggling to pay for their medications or are uninsured. Please know that the transplant centers’ social workers (like me) CAN help but only if they know that someone is having these problems, even if the transplant was more than 36 months ago. 🙂
Hi Maggie, thank you for your response. We have a list of several resources on our web site that post transplant patients (as well as CKD and dialysis patients) should be aware of, including many prescription assistance programs: http://www.kidney.org/patients/resources
NKF Constituent Services Director
I received a life-saving double organ transplant on New Years Day 2009. On January 08,2012
I went into kidney failure eight days after my Medicare coverage was terminated due Medicare’s three year policies of coverage for anti-rejection meds .At that point no health insurance was available. Neither public or governmental. I had survived blindness, diabetes, kidney failure and cancer to name just a few of lives challenges but it was not until January 8 of 2012 I thought would I meet my maker due to the eternal politics, red tape and cost of affordable health. My wait for an organ transplant was just the beginning. I now was forced to wait six months to apply for the Affordable Health Care Program if were still around to do so on July 1, 2012 . If so I could then thankfully pay a $5000.00 deductible with a $350.00 monthly premium and 20% co-pay. The only way I survived was qualifying for drug manufacturer direct programs for those living in poverty. I eventually was accepted by Medicaid in December of 2012. I survived but wondered how many don’t survive. The AHCP was not an option for me. Can you tell me what I can do to help with the HR1428 immunosuppressive proposal. ? Also the best resources to better educate myself on advocating pending proposals that could effect my quality of life in a positive way.
Thank you for your comments. You can continue to speak with your Members of Congress about the Comprehensive Immunosuppressive Drug Coverage Act: https://nkfadvocacy.wordpress.com/immunosuppressive-drug-coverage/ and how that would impact you and thousands of other kidney patients. If you haven’t already, you can send a message out through our Advocacy Action Center: http://www.kidney.org/takeaction
Thank you for your advocacy efforts!
Constituent Services Director
Pingback: 2015 Kidney Patient Summit – Day 2, Washington, D.C. | Advocacy in Action
Pingback: Kidney Walkers Take Capitol Hill | Kidney Walk
May I simply just say what a relief to uncover someone that actually understands what they’re discussing online. You certainly know how to bring a problem to light and make it important. A lot more people must read this and understand this side of your story. I was surprised that you are not more popular since you surely have the gift.|
My husband had a liver transplant, he had that hep C virus and it turned into cirrhosis. Im so worried what will happen when his anti suppressant drug coverage comes to a halt. There is no dialysis for him. He hasn’t been able to work for along time, I just don’t see him ever getting a job that will cover this. I pray this becomes important enough to enough people to pass into life coverage.
Youre so cool! I dont suppose Ive read anything like this before. So good to find somebody with some unique thoughts on this subject. realy thanks for beginning this up. this web site is something that is wanted on the web, someone with a bit originality. helpful job for bringing one thing new to the internet!