Individuals who undergo kidney transplants will now be eligible for lifelong Medicare coverage of their immunosuppressive drugs, regardless of their age. Prior to this change, Medicare beneficiaries who qualified due to end-stage kidney failure, rather than age or disability, lost coverage for their immunosuppressive medications after 36 months following the transplant.
Numerous patients faced difficulties in affording these drugs, resulting in either limited access or discontinuation of medication altogether. Both scenarios significantly increased the likelihood of transplant failure and the need for dialysis. Additionally, many individuals refrained from pursuing a transplant altogether due to concerns about their ability to afford immunosuppressive drugs beyond the initial 36-month period post-transplant.
While the American Transplant Foundation's Patient Assistance Program provides financial assistance to help patients bridge this gap, we have been advocating for this extension for years and are excited about this advancement.
July 3, 2023
At the American Transplant Foundation, our passion is helping patients navigate through their transplant journeys. We strive to provide the most up-to-date information on Living Donation so that you can be well informed when choosing to give the gift of life! We have researched up to date laws and tax credits regarding organ donation both federally and in your state.
For information on laws pertaining to living donation in your state, check out our newly updated Living Donor Laws information sheet here.
June 6, 2023
Laws to protect living donors in the US are essential for maximizing organ donation and therefore minimizing the transplant waitlist. Congress introduced a bill in February of 2021 that would prohibit all life, disability, and long-term care insurance providers from discriminating against individuals solely based on living donor status. The same bill would also include organ donation under the Family Medical Leave Act (FMLA).
The bill is still pending, but as of right now there are 19 states who have enacted living donor protection laws and 3 states who have proposed/pending living donor protection laws. For information on laws pertaining to living donation in your state, check out our newly updated Living Donor Laws information sheet here.
April 14, 2022
Kidney transplant recipients may no longer have to choose between paying for their immunosuppressant medications or paying their bills thanks to new legislation passed by US Congress.
The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2020 (H.R. 5534), passed in December 2020, will take effect on January 1st, 2023. This bill indefinitely extends Medicare coverage of immunosuppressive drugs for kidney transplant recipients for individuals who do not have other coverage. Under current law, Medicare coverage is limited to 36 months following a transplant. Individuals under 65 years of age will have to pay a premium during their first year of coverage.
“Right now, too many patients and their families worry about whether they can afford the treatment they need to keep their transplanted kidney, today we took an important step towards alleviating that burden.”Representative Ron Kind
The U.S. Department of Health & Human Services indicates that this legislation will lead to vast Medicare savings.
For more information on H.R. 5534, visit the Congress Website
feb 24, 2021
2020 is an important year for Living Donors. As of January 1st, two bills that the American Transplant Foundation advocated for have officially taken effect: Living Donor Support Act and Living Donor Insurance Act!
The Living Donor Support Act (HB 1202) supports living donors by allowing their employers to claim an income tax credit for expenses incurred during the donor’s surgery period. This helps living donors be able to take a leave of absence for the purpose of their organ donation.
“Living organ donation is not only the most effective way to eliminate the organ transplant waitlist in Colorado, but is also the most economically beneficial way to address many chronic health issues, particularly kidney disease.”Senator Bob Gardner
The Living Donor Insurance Act (HB19-1253) prohibits insurance providers (health, life, disability income, long-term care) from discriminating against living donors. They may not deny coverage or increase premiums based on living donor status.
feb 13, 2020
May 3, 2019 -- Today marks a huge victory in the transplant community through the passage of the Colorado Living Organ Donor Insurance Act! This lifesaving legislation was passed on the last day of the legislation session and we couldn't be more thrilled. Next step: Governor Polis' desk!
What it's all about: Colorado Living Donor Insurance Act will prohibit health, life, disability, and long-term care insurers from discriminating against living organ donors by charging them higher premiums or denying them insurance.
Right now, Colorado and New York are the only two states in the country that include health insurance in their bills. This provides extra protection for living donors in case the Affordable Care Act goes away and gives living donors peace of mind in the present.
The battle: This bill was introduced in March of 2019. Originally, it included life insurance, disability, and long-term care insurance providers.
American Transplant Foundation thought it was necessary to include health insurance companies to the list of entities that cannot discriminate against living organ donors in Colorado.
First, the Senate voted to include health insurance. However, it was rejected by the House. We rallied our volunteers, and thanks to consistent grassroots outreach campaign, the joint House and Senate Conference Committee decided to add health insurance back. Finally, during the last two days of the legislative session, both the Senate and the House approved this critical addition.
A message from American Transplant Foundation's Executive Director, Anastasia Henry: "We applaud the Colorado legislators who made this bill the best it can be. We have worked tirelessly to ensure living organ donors are protected in a way they deserve to be. This bill complements the Living Organ Donor Support Act that we championed in 2018, and gets us a step closer to our vision of making Colorado the first state in the country where nobody dies while waiting for a transplant. Our hope is that as a result of this bill, more lives will be saved in Colorado and more states will follow this example."
A Special 'Thank You' to the Colorado Legislators Who Fought for Living Donor Rights!
Represenative Janet Buckner - HD 40 Aurora
Representative Lois Landgraf - HD 21
(includes the City of Fountain, and unincorporated Fort Carson, Rock Creek Park and Security-Widefield)
Senator Julie Gonzales - SD 34 Denver
Senator Dennis Hisey - SD 2 Clear Creek, El Paso, Fremont, Park, Teller
Conference Committe Members:
Representative Brianna Titone - HD 27 Jefferson County
Senator Rhonda Fields - SD 29 Arapahoe County
*And all Bill Sponsors*
Our Gratitude for YOU!
Without ATF's efforts and our hardworking advocates this legislation would have likely passed without including health insurance.
We would like to thank all of the volunteers, supporters, and advocates who contacted Representatives and Senators.
To our financial donors - your support makes this work possible and we are grateful that you care about living donors, transplant recipients, and 1,839 Coloradans who are currently waiting for a lifesaving organ transplant.
May 3, 2019
ACTION ALERT: Act Now to Protect Colorado Living Organ Donors
Earlier today, the Colorado House of Representatives voted to remove Senate Amendment L.004 that added health insurance companies to the list of entities who cannot discriminate against living donors (House Bill 1253 – Living Organ Donor Insurance Act).
What does it mean? In case the Affordable Care Act goes away, living donors will be unprotected. This legislation is a huge opportunity to protect living donors – similar to the legislation the State of New York passed last year. Please urge Colorado legislators to do the right thing and do everything the can to protect Living Donors.
This bill is now headed to the Conference Committee and there is still time to make the change. You can also reach out to the Conference Committee Members directly:
- Rep. Buckner - firstname.lastname@example.org
- Rep. Landgraf - email@example.com
- Rep. Titone - firstname.lastname@example.org
Guidance for outreach to your legislators
When you contact your State Representative and State Senator (use this link to find out who they are) remember the following:
- Tell them you are a constituent; legislators pay attention to those who put – and keep – them in office.
- Communicate aspects important to you in your own words; legislators prefer not to receive standardized emails and/or calls.
- Include something specific to your district (a personal story, something you saw/heard, why this matter is especially important to you, etc.).
- Include a reference to House Bill 1253 – Living Organ Donor Insurance Act
For a phone call:
- Introduce yourself as a constituent as well as your professional affiliation or role in the community and your connection to living donation/transplant.
- “I am calling to show my support HB19-1253 and the L.004 amendment. I feel including health insurance companies to the list of entities who cannot discriminate is vital to the Living Organ Donor Insurance Act."
- Share your living organ donation story. (optional)
- Thank the elected official for their time and consideration.
For an email:
Subject Line: Please Stand Up for CO Living Donors! HB-1253
Dear Senator/Representative [ENTER LAST NAME],
My name is [ENTER NAME] and I am a [INSERT PROFESSIONAL TITLE (optional)]. I am writing you today to strongly encourage you to step up and protect living donors in Colorado by keeping the amendment L004 (HB-1253) that adds health insurance companies to the list of entities who are not allowed to discriminate against living donors.
- By rejecting an amendment L004 health insurance will be removed from this bill – which is unfair to living organ donors.
- Yes, Affordable Care Act addresses the issue of discrimination based on pre-existing conditions, however, even if it is redundant, it makes sense to have health insurance as a part of the bill (not just life/disability/long-term care) – to give living donors a piece of mind in the present and protect them in case ACA goes away in the future.
- The state of New York passed a similar bill last year and they did include health insurance for these reasons. Please stand up to protect Colorado Living Donors. Colorado Senate voted to include health insurance, however, it was rejected by the House this morning.
As one of your constituents, I urge you to work with the Conference Committee Members (Rep. Buckner, Rep. Landgraf, Rep. Titone) to make this bill as strong as it can be for all living donors in our state.
Thank you very much for your help.
Thank you for fighting with us for living organ donor rights!
Questions? Please call us at 303-757-0959 or email us at Support@AmericanTransplantFoundation.org.
April 29, 2019
Living donor insurance act - hb19-1253
March 28, 2019, Denver, CO -- Yesterday, was another big stride for living organ donors! At the Health & Insurance Committee Meeting at the Colorado State Capitol, Sponsors Representative Buckner and Representative Landgraf presented House Bill 19-1253. The Living Organ Donor Insurance Act (HB19-1253) prohibits insurance companies from denying coverage or increasing premiums for living organ donors based solely on their status as a living donor. By removing such barriers, more people can give and receive lifesaving organ transplants.
The Health & Insurance Committee was overwhelmed that this discrimination even exists and was intrigued by the testimony given. Representative Titone of the Health & Insurance Committee recently added herself to the Bone Marrow Registry and was immediately a strong 'Yes' in support of this Bill, as well as many other Representatives.
The Committee heard testimony from our friends over at the National Kidney Foundation, and an organ receiver Gary who spoke on behalf of American Transplant Foundation. Because of Gary's organ donor, he was able to receive a kidney and get off of dialysis within months of his diagnosis. Most individuals waiting for a deceased kidney donor, spend 5-7 years on dialysis while waiting. It was clear that after Gary's testimony, the Committee was excited to help get this Bill passed. In fact, statements were given by Representatives Soper, Baisley, Beckman, Will, and Jackson, as well as Chairwoman Lontine in support of this Bill.
After testimony and further discussion, House Bill 19-1253 (The Living Organ Donor Insurance Act) passed unanimously 9-0.
Thank you to Representative Buckner and Representative Landgraf for sponsoring this life-changing legislation. Also, a huge 'Thank You!' to all of the living organ donors out there who are saving lives every day! We're looking forward to taking this legislation to the Senate to better your life as donors.
For more information on The Living Organ Donor Insurance Act, download our fact sheet HERE.
If you are in support of The Living Organ Donor Support Act, sign our petition HERE.
March 28, 2019
Organ Donor Clarification Act Introduced Nationally
A bipartisan group consisting of 15 members of the House of Representatives have introduced the Organ Donor Clarification Act in order to find new ways to help support potential living donors.
This legislation would accomplish this by clarifying the language in the National Organ Transplant Act of 1984 that prohibits buying and selling organs for “valuable consideration.” U.S. Representative Matt Cartwright (D-PA), who introduced the legislation on July 19th stated: “Confusion about what constitutes valuable consideration hampers donation by scaring people away from reimbursing organ donors for things like medical expenses and lost wages.” These reimbursements are legal, and clarifying this should prevent some of the financial confusion involved with becoming a living donor.
Additionally, this bill would allow for the development of a government pilot program to test the effectiveness of non-cash incentives to living donors in an attempt to further reduce the waitlist for organs.
We at the American Transplant Foundation are proud to endorse and support this bill and we encourage you to reach out to your representatives to request that they also support this bill moving forward.
August 31, 2018
Department of Labor Opinion- Living organ donation falls under Family and Medical Leave Act (FMLA)
The US Department of Labor recently submitted an opinion letter regarding the question of whether or not living donors qualify for FMLA leave. They conclude: “An organ donation can qualify as an impairment or physical condition that is a serious health condition under the FMLA…” As such, living donors are entitled to protected, un-paid leave during the surgery and recovery period of an organ donation. This is another step forward in protecting living donors, and continuing to remove barriers to donation. Potential donors will no longer have to fear losing their job based upon their decision to donate.
august 28, 2018
Colorado Helps Pave the Way for More Living Organ Donors
COLORADO – (May 15, 2018) – Tomorrow, at 4:30 p.m., Governor John Hickenlooper will sign the Colorado Living Donor Support Act - HB1202. This legislation will remove a significant barrier for living kidney and liver donors who may not step forward if they are afraid to lose their job or income during their recovery period after surgery. It makes Colorado one of the first states in the country to subsidize paid leave for living organ donors by providing a tax credit for employers.
There are 2,300 people on the waitlist for an organ transplant in Colorado. 96% of those individuals are in need of a liver or kidney, both of which can be donated by a living person.
Studies have found that the average American experienced nearly $2,000 in lost wages when they donate a kidney, and more Coloradans die each year of kidney and liver failure than all the homicides in the state combined.
Also, recent studies have shown that many transplant patients won’t talk about living donation because they are concerned that their family members and friends will lose income and experience financial hardship as a result of living organ donation.
The American Transplant Foundation introduced HB-1202 in February 2018 and has lead grassroots advocacy efforts to ensure its successful passage. Until now, the only legislation in place to support living donors in Colorado applied only to state employees and provided them with just two days of paid leave specific to organ donation.
Bill Background: The Living Donor Support Act would provide up to 10 days of paid time off to living organ donors in the State of Colorado. Employees who receive less than $80,000 annually are eligible.
The Act would provide a tax credit of 35% to employers granting paid time off to employees becoming living organ donors. In addition, employers will receive a tax credit for the cost of temporary replacement help. The bill will take effect on January 1st, 2020.
Senator Bob Gardner said, “Living organ donation is not only the most effective way to eliminate the organ transplant waitlist in Colorado, but is also the most economically beneficial way to address many chronic health issues, particularly kidney disease. On average, for each 2 transplant patient taken off of dialysis, Medicare saves over $500,000 over the course of ten years.”
State Representative Alec Garnett said, “Living organ donors should not face significant financial hardship or risk losing their jobs because they are willing to give the Gift of Life. This bill will benefit the many in need of a lifesaving transplant, and it will allow those donating an organ to take time off to recover without financial stress.”
Altruistic kidney donor Sara Martin said, “I think there are a lot of people that would become a living donor, but without the security of knowing their employer is supportive, they feel they can't. With this certainty, it could shift some potential living donors from ‘no, I can't’ to ‘yes, I can.’”
Anastasia Henry, American Transplant Foundation’s Executive Director, said “Living organ donation is not only the most effective way to eliminate the organ transplant waitlist in Colorado, but it also the most economically beneficial way to address kidney disease. Our hope is that this legislation will bring us a step closer to making Colorado the first state where nobody dies while waiting for a transplant.”
May 15, 2018
NEVER GIVE UP:
COLORADO LIVING DONOR SUPPORT ACT PASSED THE STATE SENATE!
The first bill to provide specific benefits to living organ donors in the state of Colorado was passed by our small, but mighty team. This was not an easy bill to pass and there were many hurdles to cross- but thanks to our dedicated staff, Board Members, volunteers, and many supporters, we were able to achieve the seemingly impossible!
The Colorado Living Donor Support Act will take effect in 2020, providing time for our legislators to plan its implementation and work it into the state budget.
Many of you personally reached out to your district Senators in support of this critical piece of legislation and your voices were heard! Please take a moment to reach out and thank those Senators who voted in favor of this bill.
You can click here to locate your district Senator on the map and find their contact information below:
Senator Aguilar, District 32, Voted YES
Senator Baumgardner, District 8, Voted NO
Senator Cooke, District 13, Voted NO
Senator Coram, District 6, Voted YES
Senator Court, District 31, Voted NO
Senator Crowder, District 35, Voted YES
Senator Donovan, District 5, Voted NO
Senator Fenberg, District 18, Voted NO
Senator Fields, District 29, Voted NO
Senator Garcia, District 3, Voted NO
Senator Gardner, District 12, Voted YES
Senator Grantham, District 2, Voted YES
Senator Guzman, District 34, Voted YES
Senator Hill, District 10, Voted NO
Senator Holbert, District 30, Voted NO
Senator Jahn, District 20, Voted YES
Senator Jones, District 17, Voted YES
Senator Kagan, District 26, Voted NO
Senator Kefalas, District 14, Voted YES
Senator Kerr, District 22, Voted YES
Senator Lambert, District 9, Voted YES
Senator Lundberg, District 15, Voted NO
Senator Marble, District 23, Voted NO
Senator Martinez-Humenik, District 24, Voted YES
Senator Merrifield, District 11, Voted YES
Senator Moreno, District 21, Voted NO
Senator Neville, District 16, Voted NO
Senator Priola, District 25, Voted YES
Senator Scott, District 7, Voted YES
Senator Smallwood, District 4, Voted YES
Senator Sonnenberg, District 1, Voted NO
Senator Tate, District 27, Voted YES
Senator Todd, District 28, Voted YES
Senator Williams, District 33, Voted NO
Senator Zenzinger, District 19, Voted YES
Thank you to everyone who supported us through this long process and to the Senators who recognize the courage and lifesaving efforts of Colorado's living donors. We could not have done it without you!
May 8, 2018
COLORADO LIVING DONOR SUPPORT ACT
Last year, more Coloradans died or became too sick to remain on the transplant wait list than the number of Coloradans who died as a result of homicide. Please visit the Colorado Organ Donation FAQs page for additional statistics on organ donation in our state.
Help us support living donors by making the process less of a burden.
Currently, only Colorado state employees may take up to two days of paid leave per fiscal year specifically for organ donation.
The ability to get paid time off work is an enormous barrier for living donors. The loss of income and fear of losing their job has deterred many kidney and liver living donors.
This bill will raise awareness and encourage both directed and non-directed living donation, encouraging and helping individuals to donate lifesaving organ without suffering financial hardship as a result of the donation.
An employee donating an organ will be granted paid leave not exceeding 10 working days or the hourly equivalent and for the cost of temporary replacement help, if any, during an employee's leave of absence period.
For any employer granting paid time off to living organ donors in the state of Colorado, employers shall be entitled to a tax credit of 35% of the employee’s regular salary for up to 10 business days. Employees who receive less than $80,000 annually are eligible.
1. Support living donors by SIGNING THE PETITION
2. Contact your state legislators
3. Spread the word on social media, sample tweets:
- Help support organ donation by supporting living donors #YestoHB1202 #ColoradoLivingDonors #coleg
- If just 1 out of 1,100 adult Coloradans became living donors, the waitlist for kidney and liver transplants in the state would be eradicated. #YestoHB1202 #ColoradoLivingDonors #coleg
4. If you would like to become an advocate please email us: email@example.com
Thank you for supporting the bill and helping to make Colorado the first state where nobody dies while waiting for a transplant!
Children's Hospital Colorado
Chris Klug Foundation
NKF Serving Colorado, New Mexico, Montana, and Wyoming
Presbyterian/St. Luke’s Medical Center – Transplant Center
UCHealth Transplant Center
READ THE BILL: HB 1202 One Pager
February 22, 2018
SUPPORT LEGISLATION TO IMPROVE ORGAN TRANSPLANTATION
The American Transplant Foundation is proactively leading the way in shaping, and promoting, positive legislative initiatives that will eliminate the gap between the need for organs and their supply. We need the public's support and involvement, so please get involved with these upcoming initiatives:
Health insurance initiative: Our goal is to reform health insurance to provide better, and longer, after-care coverage for transplant recipients requiring long-term medication and medical care.
Support Anti-Rejection Medication Coverage Bill: After receiving a kidney transplant, a patient must take immunosuppressive drugs for the rest of their life, at a cost of $19,000 per year. Without these drugs, the body will reject the organ and the patient will have to go on dialysis. Under current law, Medicare covers these medication costs for three years only, but will cover much higher dialysis costs – $77,000 per year – indefinitely. Click here to learn about current legislation and sign our petition to Congress.
Organ and donor registration initiative: Through an ATF driven initiative, the Colorado Department of Revenue has printed an organ and tissue donor registration form in the State Income Tax booklet, providing Colorado residents an easy, and annual, opportunity to register as a donor. We are currently working with the State towards integrating an easy check-off into the form that will facilitate an even more simplified means of registering.
Clarify elimination of the family veto: Our goal is to clarify the role of a deceased organ donor's family when it comes to family veto rights regarding the recovery of organs from the donor.
Legalize private organ exchange: Our goal is to achieve policy that will legalize arranged organ donations between consenting parties in America.
Support stem cell research: Our goal is to support and represent policy that furthers stem cell research because advancements can lead to increased organ supplies.
Expand payments allowable under NOTA: Our goal is to reform policy to expand the allowable payments to support organ transplants.