Get involved: Pre-Existing Condition Patient Protection Act of 2009

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:

• 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

A rockin’ finale on 30 Rock: “He Needs a Kidney!”

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.

 

A mathematical approach to kidney donor chains

This terrific and thoughtful blog post is WAAAAY over my non-math-oriented head, but I enjoyed reading it … so I’m sure any of you who are more mathematically inclined will enjoy it even more.

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!

Ellasliver.com–the best Web site I’d love to see eradicated

Jeffrey over at Transplant Alliance called the online community’s attention to a beautiful Web site called ellasliver.com.  Ella 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.

Seeking Spanish-speaking liver cancer patients/survivors

It is a long shot, but I promised to try.  As some of you already know, the need for quality health information in languages other than English is an important issue to me — and important especially in the United States.   An organization is seeking 10 patients or survivors of liver cancer who are native Spanish speakers, to review information about liver cancer that has been translated into Spanish, for feedback on quality of the translation.  If interested contact Brian Granger at info@spectrumtranslation.com.

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.

Rock for HCV! Tawn Mastrey Foundation Concert on 4/4

Twin Citians – come out and help slay the dragon of Hepatitis C at an exciting event that’ is close to my heart.  The Tawn Mastrey Foundation is hosting an intimate concert event at the Station 4 Club on Saturday, April 4, 2009, from 2 p.m. to 2 a.m.  The event celebrates the life of veteran rock DJ (KNAC, Sirius, etc.) Tawn Mastrey, who passed away of Hepatitis C last year. 

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.”

How to give without spending – 365 days a year!

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.)

Halachic organ donation – the viewpoint of Rabbis

An active blogger who is living in Jerusalem for a year recently posted about her experience celebrating the Jewish holiday of Purim. In her post, she describes her experience working with the Halachic Organ Donor Society, and in reading it I learned a little about the Jewish religion’s perspective on organ donation. Here’s an excerpt from her post:

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.

Good questions to take to your living donor work-up

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.

Another domino transplant chain first: 12 patients, 3 states

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.