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Posts Tagged ‘Living organ donation’

U.S. Senator John Rockefeller (D-WV) and Representative Joe Courtney (D- CT) have introduced legislation to prohibit pre-existing condition exclusions in group health plans and in health insurance coverage for groups and individuals.  For living organ donors, this is important news, because health insurance plans can and do consider living donation to be an “pre-existing condition” that may impact a donor’s ability to secure health insurance and the cost of premiums.

Called the Pre-Existing Condition Patient Protection Act of 2009, the legislation is being supported by a who’s who list of organ-transplant-related non-profits:  The National Kidney Foundation, The American Society of Transplant Surgeons, NATCO – the Organization for Transplant Professionals, and the United Network for Organ Sharing (UNOS). 

To get informed, check out govtrack.us, where you can read the full text of the bill, track its movement through the House and Senate and read the floor speeches made about it.  Here are the links directly to the House and Senate versions:

If you wish to write your Congressional representatives, you can look them up at www.senate.gov and writerep.house.gov/writerep/welcome.shtml, both of which offer convenient email forms as well as mail and fax information.

For those who want to support the legislation, Transplant Alliance offers this sample letter:

(Date)
The Honorable (add Senator’s full name)
U.S. Senate
Washington, DC

Re: Preexisting Condition Patient Protection Act of 2009

Dear Senator (add Senator’s name)

(I or your organization) request that you support the Act introduced by
Congressman Joe Courtney, and Senator John Rockefeller titled
“Preexisting Condition Patient Protection Act of 2009”. This Act will
prohibit preexisting condition exclusions in group health plans and
health insurance coverage in the group and individual markets, including
live organ donation. It will remove barriers to live organ donation by
eliminating the fear of losing access to affordable private health care
insurance when becoming a live organ donor.

There are currently over 109,000 people on the nation’s waiting lists
for donor organs and over 6,000 Americans die each year waiting for a
donated organ. We must to do what we can to increase live organ
donation. Pre-existing condition exclusions dramatically increase the
cost of health insurance for these altruistic live donors, or have the
impact of rendering the person uninsurable altogether. The fear of
losing access to affordable health care insurance can be a major barrier
to potential live organ donors when contemplating this gift of life.

Live organ donors are a very low health care risk. It is time that the
federal government prohibits private health insurers and self-insured
health plans from treating live organ donors as having a pre-existing
condition. Removing live organ donation as a pre-existing condition is
a necessary component of health care reform.

(you or your organizations name here) appreciate(s) your consideration
of this request to support this Act that will prohibit live organ
donation from being considered a preexisting conditions. Thank you.

Sincerely,
Name
Title
Organization
Address

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I’ve been traveling all over the world lately and am woefully behind on my TV watching… so I’m super late in pointing out the simply-best-ever musical finale of a quirky sit-com in the history of television.  My heros at NBC’s show 30 Rock have written living organ donation into their plot for their last two episodes of this past season.  Alec Baldwin’s character Jack went on a search for his biological father, discovering it was none other than a guy played by Alan Alda, who had no idea he had a son.  Only to learn that daddy needs a kidney!   In the big finale, Jack ropes in heavy celebrity names to host a benefit concert called “Kidney Now” to help find a kidney for his dad. 

Queue big musical number: He Needs a Kidney!  It stars Sheryl Crow, Elvis Costello, Mary J. Blige, Cyndi Lauper, the Beastie Boys, Clay Aiken, and many more.  Genius.  Brilliant.  God bless 30 Rock.

If you’re in the U.S., you can watch the full episode for free on Hulu.com

To help continue to raise awareness, they’ve made a music video of the song, too, which is available for six months on itunes. Click here to go straight to the download page.

 

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Jeffrey over at Transplant Alliance called the online community’s attention to a beautiful Web site called ellasliver.comElla Watson is a 25-year-old artist who somehow, remarkably, managed to survive biliary artesia as an infant and live relatively complication-free until she was 24.  She now needs a liver transplant, and her family and friends are considering being living donors.  Her art work is fun to check out — she has a photographic “medical militia” series with pieces titled things like “Shoot from the Gut” featuring waterguns and percutaneous bile drains – along with a perfect “mercedes” scar. 

I don’t know Ella and have never talked to her, but she is a member at Transplant Alliance, a great community to explore if you are experiencing transplantation in any way.

Thank you, Ella, for your energy, your humor, your spirit.  Let us know at GGF if there is anything we can do to support any living donors who might pop up to help. We’re here for them!

Here’s hoping your Web site can come down soon and you are on your way to a healthy new chapter.

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Living organ donors are some of the most naturally and intuitively generous people I know.  Many of us simply don’t give a second thought to the idea of giving.  The desire just comes to us like the impulse to breathe, or drink water when we are thirsty.

I found a very fun blog this weekend that I suspect my fellow living donors will enjoy: 2009: A Year of Giving Without Spending.  Author Jennifer is posting one idea per day about how to give something to the world without spending money — 365 days of great ideas and inspiration.   

Day 66 was “Live Organ Donation” (bless her!) and when I wrote to her this weekend to say thanks for thinking of it, she amended her post to link to our Web site, aw! Thanks, Jennifer! (And thanks for the daily inspiration.  You are making a bigger impact than you may realize by spreading your positivity and sharing your gifts.)

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An insider at the University of Pittsburgh Medical Center suggested two “right questions” to ask of a transplant center to better understand the risk of being a living donor:

  • How many of your living donors had complications required invasive procedures?
  • What is that number as a percentage of your total living donors for that same time period?

I like these questions — precise, unambiguous, and, if you need the help, good conversation starters overall about the risks and your transplant centers’ view of those risks.  It is worth taking the time to spell out: Different centers will have different answers, different approaches, different perspectives.

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Score another achievement for kidney paired donation (or daisy chain transplants, or domino transplants, as they are sometimes called). Johns Hopkins in Baltimore joined Barnes-Jewish Hospital in St. Louis and Integris Baptist Medical Center in Oklahoma City for a 12-patient, six-transplant cross-country kidney chain.

An anonymous altruistic living donor began the chain, and a paitent on the UNOS waiting list for a kidney was the last link. According to the Johns Hopkins news release, all six donors and all six recipients are recovering.

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Transplant surgeons “tweeting” from the operating room during kidney surgery?  I LOVE technology!

(For those of you not hip to Millenial lingo, “tweeting” means posting brief updates to Twitter.)  Thanks, Meghan, for sending me the link!

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