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Advocacy

THE WHITE HOUSE

 

FACT SHEET: Obama Administration Announces Key Actions to Reduce the Organ Waiting List

“America’s progress in science and technology has countless revolutionary discoveries within our reach... New breakthroughs in treating cancer and ending the wait for organ transplants… That’s some of what America can do.”

President Obama, May 19, 2016

Full White House Fact Sheet with all commitments: https://www.whitehouse.gov/sites/whitehouse.gov/files/documents/White_House_Organ_Summit_Fact_Sheet_FINALv2.pdf

 


 

Office of the Press Secretary

 

FOR IMMEDIATE RELEASE

June 8, 2016

 

 

Media Advisory: White House to Host Organ Summit

 

WASHINGTON, DC – On Monday, June 13, the White House will host an Organ Summit as another essential step toward increasing access to organ transplants and reducing the organ waiting list. At the Summit, the Administration and private entities will announce a new set of actions that will build on the Administration’s previous accomplishments to improve outcomes for individuals waiting for organ transplants and improve support for living donors.

 

WHEN:          Monday, June 13, 2016, from 10:30AM-12:30PM EDT

 

WHERE:        Eisenhower Executive Office Building  Washington, DC

 

WHO:             Senior Administration Officials, representatives from companies, foundations, universities, hospitals, and patient advocacy organizations who are working to increase access to organ transplants and reduce the organ waiting list

 

NATCO is pleased to be an invited attendee at the Organ Summit.

 

WEBCAST: This event will be webcast live at www.whitehouse.gov/live.

 

We hope you will join the live webcast.

 

 

 

 

NATCO Members:

We need your help in advancing important legislation for the organ donation and transplantation community. 

“The Living Donor Protection Act” was recently introduced in the U.S. Senate (Senate Bill S. 2584) and House of Representatives (House Bill H.R. 4616).  This legislation seeks to strengthen and protect the rights of living organ donors. The bipartisan and bicameral (House and Senate) supported legislation was introduced by Senators Mark Kirk (R-IL) and Kirsten Gillibrand (D-NY), and Congressmen Jerrold Nadler (D-NY) and Michael Burgess, MD (R-TX). 

Under current law, the Family and Medical Leave Act (FMLA) does not specify that living organ donors can take unpaid leave to recover from their donation and does not guarantee that donors will have a job waiting for them after surgery. Further, according to a 2007 study in the American Journal of Transplantation, as many as 11 percent of living organ donors experience difficulty securing or paying for insurance after their procedures because of discriminatory practices.

The Living Donor Protection Act would protect living organ donors and promote organ donation in three easy, low-cost ways:

  1. Prohibit life, disability, and long term care insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors;
  2. Clarify that living organ donors may use FMLA time to recover from the surgeries and procedures involved in donation; and
  3. Direct HHS to update their materials on live organ donation to reflect these new protections and encourage more individuals to consider donating an organ.​

Please call or email your 3 Members of Congress (2 Senators, 1 Representative) and ask them to support this legislation.  If calling their offices, ask to speak with the staff person who covers health policy.  You can use the attached letters as your script.

Use these 2 links to find your 2 Senators and your Representative (in the top right corner of the webpage there is a place for you to enter your zip code to identify your Members of Congress):

http://www.senate.gov/index.htm

http://www.house.gov/

Or you can send you address to Wade Delk, our Governmental Affairs Director at wadebdelk@gmail.com and he will find them for you, address the letters, and send them back to you to submit.   If you have questions you can also call Wade at 202-253-7862.

Senate Letter

Representative Letter

NATCO Advocacy Update

Over the years we have been involved in legislative and regulatory advocacy. During the last year our focus has been on other issues of great necessity to the organization but we have not forgotten about the important role we need to play in the political arena. I am happy to report that we are re-engaging in those activities in full force in 2016.

Wade Delk, our Director of Governmental Affair from 2007-2014, will again take on that role for us in 2016. Over the coming months he will be working with Transplant Roundtable Members, and our other friends in the Administration and on Capitol Hill, to understand the current legislative and regulatory environment so as best to represent the interests of our Members and advance our organizational goals.

There are numerous issues he will be working on. Two of them will be familiar to many of you. The first is Comprehensive Immunosuppressive Drug Coverage for Kidney Transplants Patients. A bill with this name has been introduced numerous times over the years, but it has yet to be passed. This, if passed, will ensure that kidney patients are able to maintain Medicare coverage of immunosuppressive drugs beyond the current 36 months

The second is the Living Donor Protection Act. First introduced in 2014, it would prohibit discrimination based on a person's status as a living organ donor in the offering, issuance, cancellation, coverage, price, or any other condition of a life insurance policy, disability insurance policy, or long-term care insurance policy. This also would revise the Family and Medical Leave Act of 1993 to specifically include living organ donation as a serious health condition that entitles a covered employee to leave. We have been working with this issue for several years. When it was introduced, then NATCO President Carrie Lindower, was quoted in Congressman Nadler’s (the bill’s sponsor) press release. Here is what she said in the summer of 2014:

NATCO is very pleased to have Congressmen Burgess’s and Nadler’s continued understanding and support of organ donation and transplantation issues made even more apparent through the introduction of this legislation. It will eliminate the punishment of denied coverage and increased premiums living donors too often receive for simply wishing to give the gift of life. Additionally, it further supports living donors by making organ donation surgery a part of the Family Medical Leave Act as it should be,” said the Organization for Transplant Professionals' President, Carrie Lindower, RN, MBA, CCTC, CPTC

There are more issues requiring our involvement, and as always we will report on our activities, the progress made, and ways you can engage in them. We are pleased that we can again have NATCO represented on all issues of importance to our Members so your voice is heard.

If you would like to know more about current legislation, regulations, or hear something that might affect organ donation and transplantation, please email or call Wade at wadebdelk@gmail.com /202-253-7862.