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
While I fully support the bill, I take serious issues with the Transplant Alliance’s letter.
“We must to do what we can to increase live organ
donation.”
For whom? Certainly not the donor.
“Live organ donors are a very low health care risk. ”
Do they know something we don’t? Last time I checked, there was no registry for living donors, and according to a 2006 assessment of all existing research studies, the data we do have is inadequate on all fronts.
Bottom line: we have no idea how much of a risk living donors are in by donating. I’m thinking the over 100 living kidney donors that UNOS/OPTN knows have been diagnosed with end-stage renal disease would disagree with the ‘low risk’ statement thoroughly.
Stumbeld on your blog and was hoping that you and your readers would be interested in this.
http://www.firstgiving.com/hallietwomey
6 years ago Saturday, my Dad received a new heart. He lived in a Boston hospital for 98 days basically waiting to get a new heart or to die. It was that cut and dry. The doctor’s were brutally honest….at 59, he would die without a transplant. While there, we watched as several of his floormates died before a heart became available. It was hard. Very hard. Yet it happens more time each day than I care to think about.
Since that day (June 13th, 2003) I have passionately wanted to do SOMETHING, ANYTHING to help raise awareness about organ donation. I always believed that if my Dad’s story helped change even one person’s mind, then I would be a very happy daughter.
But you know what? I want to do more. I want to help in a BIG WAY.
I’ve been debating how one thankful daughter can make a difference, How I can help spread the word. How I can best honor not only my Dad but the memory of the donor as well.
What I know is that more eduaction is needed and that more people need to learn why organ donation is so very important. What I’ve found is that for some people, until they are faced with a loved one (or themself) needing an organ, they don’t necessarily think about it. I wish that NO ONE ever had to face the excruciating choice involved in donating their loved ones organs, but I know that will never happen. If my Dad’s donor family had NOT agreed to donate their son’s heart, my Dad would not be here today.
What I decided to do is to hold a raffle in August to raise as much money as I possibly can. All the money I raise will be turned over to UNOS, an organization that works dilligently to raise organ donation awareness.
Hope you and your readers might hop over and check it out. There will be 25 amazing prize packages raffled off with items totaling thousands of dollars.
Thanks in advance for your time,
Hallie
We’re looking for walkers and sponsors! Join your state’s Liver Life Walk at http://www.liverfoundation.org/walk
Great post and thanks for the information. Since our blog links to yours I wanted to let you know of our new blog address: lungsforlifeblog.blogspot.com
This is very important legislation to help protect the selfless individuals who give so much of themselves. My sister who donated a kidney to me 10 years ago was denied health insurance because of her “preexisting condition” of having donated a kidney. I will certainly be tracking this legislation as I go through the very frustrating experience of trying to help my sister find health coverage.
We have assembled a selection of get well gifts that are perfect for letting people who are sick know that you are thinking about them. Healing Baskets will give you something, whether gifts, words or just the confidence to reach out, so that you can ‘touch’ and ‘connect’ with someone when they need it most. Often that’s all it takes for someone to begin their healing journey. Check out the idea section if you need inspiration.