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:

• House of Representatives H.R. 1558
• U.S. Senate S. 623

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

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.

The blogger writes about a married couple — mathemetician Sommer Gentry and Johns Hopkins transplant surgeon Dorry Segey — who were principal researchers in a paper about how a mathematic algorithm might be applied to pairing thousands of potential donors with thousands of potential kidney recipients in a giant, graceful swap.  The paper they wrote suggests that such a mathematical solution could be a major part of the solution to the organ shortage for kidney recipients, provided it is paired with the appropriate controls to protect social justice and other sociological issues.  (At least, I think that’s what it said! )

Wow.  This idea might be worth cracking out my old algebra book to understand better!

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.

Speaking of quality translation, here’s my woefully intermediate attempt to translate the above:

Creo que la necesidad para la traducción de información médica, de inglés a español, es una problema importante en los Estados Unidos.  Una organización en Los Paises Bajos esta buscando a 10 pacientes que sufren de cáncer de hígado, para repasar tradujo la información para la calidad.  Si esto le interesa, escribe a Brian Granger, info@spectrumtranslation.com.

Her sister Cara Mastrey, who I have the blessing of knowing personally, is the angel behind the foundation, which is fulfilling Cara’s promise to Tawn to stop the spread of HCV.  The concert is a launch fundraising event for the Tawn Mastrey Foundation. For details visit www.tawnmastreybenefit.com or, on Facebook, search for “Tawn Mastrey Foundation.”

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.)

I chose to participate in an educational project regarding halachic organ donation. The issues are as follows: Rabbis who object to organ donation do not do so because a body must be buried whole (though some people do use this as their objection). Rather, they object because organs are usually taken from a person who is brain-stem dead but whose heart is still beating with the help of a ventilator. These Rabbis consider a beating heart to be a sign of life and therefore donating organs at this point would be killing the donor. What I did for my day of chesed (kindness) was to spread some education on the issues as well as information on famous Rabbis who do agree with organ donation. A LOT of Orthodox and Haredi Jews follow the thoughts and ideals shared by their Rabbi so closely that they refuse to deviate from their Rabbi’s viewpoints. Therefore, if their Rabbi doesn’t agree with the idea of organ donation then they do not agree with organ donation. Luckily, the organization I worked with, the Halachic Organ Donation Society, has great information that lists every major Rebbe who supports the organization. Also, the organization created a donor card that allows donors to choose to donate their organs at brain-stem death or after cardiac death. So, a group of us stood on the busy intersection of Emek Refaim and Rachel Immeinu to hand out information and sign people up for organ donation cards (it helped that our friend, Josh, brought his cute new puppy. Puppies are always a great engagement tool).

I will be adding a link to the lists at right to the Halachic Organ Donor Society’s Web site.

• 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.

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.