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.

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 1^st, 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

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!

Bill Sponsors:

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. 

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 - repjanetbuckner@gmail.com
• Rep. Landgraf - loislandgraf@gmail.com
• Rep. Titone - rep.brianna.titone@gmail.com

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:

1. Introduce yourself as a constituent as well as your professional affiliation or role in the community and your connection to living donation/transplant.
2. “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."
3. Share your living organ donation story. (optional)
4. 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.

Sincerely,

[ENTER NAME]

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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.