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Legislative Initiatives

Long Island TRIO Legislative Initiatives

Long Island TRIO is continuing our phone calls and continuing to send letters to the governor with regard to the Anti Mandatory Mail Order bill in New York State.

Should New Yorkers be mandated and forced to only purchase prescription medications from mail order houses out of state?
Some consumers are required by their health insurance plan to purchase their prescription drugs only through mail order now. We think that New Yorkers should have a choice with regard to where they purchase their prescription medications.

If this bill is signed into law, New Yorkers will have a choice.

Please keep up the good work. The bill was passed unanimously in the New York State Assembly and also passed 62-2 in the New York State Senate. Gov. Cuomo has still not signed the bill even though the state legislature stepped up and passed this bill five months ago.

When you call the governor's office, you can refer to the bill as the AMMO bill and the bill is AMMO is an acronym for "Anti Mandatory Mail Order" and bill can be referenced as A 5502.

Please call the governor at 518-474-8390

Example of call conversation: Hello, I am ________ and I live in _________. I would like to leave a message for Governor Cuomo. Please ask him to preserve my right to fill my prescriptions at my local pharmacy by signing A.5502 into law. Thank you.

Let the governor know that you know that this bill passed in the New York State Assembly and it passed in the New York State Senate as well. It's now on the governor's desk.

Here is the background:

The New York State Assembly and Senate passed legislation that would provide consumers with choice on where to purchase their prescription drugs. Currently, some consumers are required by their health insurance plan to purchase their prescription drugs only through mail order. Under this legislation, these consumers would have the option of purchasing their drugs from a local pharmacy.

New York's community pharmacies have been reeling after years of reimbursement cuts and the proliferation of mail order mandates. Over 350 independent pharmacies have closed since 2008.

In fact, mail order mandates have resulted in over $5 billion worth of pharmacy business leaving the state every year. These dollars go to states with large mail order houses.

We have nothing against mail order purchases and sales but feel that consumers should have a choice.

What do you think?

Should New Yorkers be mandated and forced to only purchase prescription medications from mail order houses out of state?

Most importantly, this bill will result in no price increases for consumers or health insurers. The bill requires that the local pharmacy be reimbursed at a comparable price as the mail order pharmacy. Health plans will continue to be able to set co-payment amounts for their customers.

Once the bill is signed, This act shall take effect on the thirtieth day after it shall become a law and shall apply to all policies and contracts issued, renewed, modified, altered or amended on or after such effective date.

This bill will allow most New Yorkers to choose their pharmacy without any financial penalties or hindrances. The copays will be the same as mail order. The quantities will be the same as well.

The Long Island TRIO Annual Rose Garden Ceremony

An event that honors those who have given life to others.
By Cindy Springsteen

Legislator Judy Jacobs and LI TRIO President Michael Sosna, Credit Nassau County Legislator Judy Jacobs and The Long Island Chapter of Transplant Recipients International Organization

The Long Island TRIO Annual Rose Garden Ceremony honors donors and donor families, those who have given others a new life.

Nassau County Legislator Judy Jacobs attended the ceremony, which was hosted by The Long Island Chapter of Transplant Recipients International Organization. The event took place at Eisenhower Park Sept. 17, 2011.

Healthcare profressionals, members of Long Island TRIO, the NY Organ Donor Network, as well as organ and tissue recipients, and the donor families were the guest speakers at the ceremony.

Mike Sosna, president of LI TRIO welcomed and honored the donors and donor families as he explained that "LI TRIO is a non-profit all volunteer organization committed to improving the quality of lives touched by the miracle of transplantation through support, advocacy, education, and awareness. We keep in mind today that there are currently over 112,264 people waiting for the Gift Of Life.

" I find it concerning that more than 90% of Americans say they support organ donation, but only 30% know the essential steps to enroll in a Donor Registry, " he said.

Sosna continued: "The Donor Families made a decision to save lives at what could have been the most challenging and difficult time in their lives. As volunteers, we try to volunteer helping with The New York State Donor Registry in order to help spread the message and positive effect of The Gift Of Life. We try to do what we can to thank donor families in a sincere manner although we know that words are just not enough. As recipients, we try to also thank our heroes with deeds such as making a commitment to volunteering as much as we can and telling our story to others as a way of promoting the importance of saving lives with organ donation."

Jacobs' speech was one that also gave a personal touch of experience on transplants. "This is always such a moving and inspiring event and it is humbling to be in the presence of such outstanding individuals," she said.

"My brother in law is a kidney/liver transplant survivor. I had the honor of meeting two young girls. One, Lauren Shields is a heart transplant survivor and the other, Gillian Cohen, is a liver transplant survivor.

Legislator Judy Jacobs added that "Words cannot adequately thank the Donor Families for their compassion at such a difficult time, nor can words express the awe one feels for those who have triumphed to live fruitful lives following the transplant they so desperately needed."

To visit the Donor Rose Garden you can find it in Eisenhower Park, adjacent to the Women's Sports Pavilion Parking field 6/6A.

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Long Island Herald Article

Long Island TRIO's re-dedication of donor rose garden In Eisenhower Park

L.I. needs more organ donors
Local man waits, hopes for a new heart
By Shannon Koehle for the Long Island Herald

A Rose Garden rededication ceremony to honor Long Island organ donors took place last Saturday in Eisenhower Park.
Approximately 300 people turned out for the 16th annual ceremony — which years ago attracted just a handful of people.

"These donor families are unselfish in a time that is tragic," said Mike Sosna, president of the Long Island Transplant Recipient International Organization. Sosna became involved with TRIO after receiving a kidney from his father, and was named president of the organization in 2006.

"We're here today to honor donors and donor families who have given the gift of life," he said.

One 11-year-old recipient who attended the ceremony is actively trying to change lives. Lauren Shields, who spoke at the event, was infected with a virus that attacked her heart, said her mother, Jeanne. Lauren underwent a successful heart transplant in March 2009.

COURTESY LONG ISLAND TRIO
Lauren Shields, 11, is a heart recipient, and spoke at the Rose Garden Rededication on Saturday.

While Jeanne Shields said she is grateful that someone chose to donate their heart for her daughter to use, she added, "When you're on the other side and waiting, it can be the most helpless feeling in the world."

According to Sosna, 18 Americans die every day waiting for a donor organ, and 1,257 people had organ transplants in New York in 2010. Given those numbers,

Lauren and her mother decided to get involved in the effort to increase donor registration on Long Island.

New York state has among the fewest registered organ donors in the nation, said Sosna, and a main reason is that when residents are asked to enroll in the donor registry on the form at the Department of Motor Vehicles, a response is not required.

Now, the Shields family and TRIO are working to implement Lauren's Law. The legislation would require residents to state whether or not they want to be an organ donor.

Jeanne Shields explained that it is important to have the words "not at this time" on the form for those who choose not to participate rather than just "no," because otherwise doctors would not be allowed to ask their families about organ donation.

COURTESY LONG ISLAND TRIO Mike Sosna, Gillian Cohen and Lauren Shields give a rose to each donor family honored at LI TRIO's Donor Roise Garden Cremony

While the proposed law easily passed the State Senate's Transportation Committee in April 5, and was approved by the full Senate on Lauren's birthday, April 13, TRIO came up against unexpected opposition in the Assembly, and will return to the Legislature in a few months to try again.
Another important organ donation measure, signed into law nearly three years ago, enables New Yorkers to sign up to be organ donors online, Sosna said. But despite its approval, he added, the law has yet to be implemented.

COURTESY LONG ISLAND TRIO

Red and yellow roses were distributed to donor familiesat the Rose Garden Rededication.

Hundreds of New Yorkers are in need of organs, one of whom is East Meadow resident Jeff Whitman. Whitman was born in 1966 with a heart block and a murmur. Due to the relatively primitive technology of the time, doctors decided to simply monitor his condition.

Whitman, who moved to Connecticut and lived there until recently, received a pacemaker when he was 23, to stimulate his decreased heart rate. Years later, when his heart problems worsened, he received a biventricular device to improve his heart function.

During that procedure, doctors accidently perforated his heart, but they were unaware at the time that they had done so. For Whitman, the pain and chest pressure got worse as months passed. His doctors finally realized that his lungs and heart were filling with fluid and determined the cause. He was told he would need a heart transplant.

Whitman has nearly died a number of times, enduring heart rhythm problems that caused the device in his chest to shock him as it attempted to establish a normal rhythm, an infection of an implanted ventricular assist device, known as an LVAT, allergic reactions to medications and induced comas.

He was first placed on a transplant list in March 2009, when he received the LVAT, but he was removed the following year, when his wife was re-diagnosed with colon cancer. Prospective donors must have support at home in order to stay on the list. Last June, his wife died.

Living in a rehabilitation facility after another stint in the hospital, Whitman was looking for friendship and support when he reconnected with a former high school friend, Denise Tristano Pascalis.

"He needed a home and support to get back on the list," said Pascalis. She opened her arms and her home to him.
Two weeks ago, East Meadow residents welcomed Whitman home with a gathering at Miller's Ale House. He is now a patient at Montefiore Medical Center and — now that he has support — is hoping to get on the facility's heart transplant list within the next few months.

"Good things have to come your way at some point," said Pascalis.

To learn more about LI TRIO, visit www.litrio.org.

To contact Jeff Whitman, email him at xcaliber36x@aol.com/ Comments about this story? SKoehle@liherald.com or

(516) 569-4000 ext. 287.

Source:

http://www.liherald.com/eastmeadow/eastmeadow/stories/LI-needs-more-organ-donors,35801?page=1&content_source=

LIHERALD.com

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From Mike Sosna, President
Long Island Transplant Recipients International Organization

Our chapter has issued a Public Policy Statement with respect to the serious Medicaid (AHCCCS) situatiion in Arizona. Our national organization's Board Of Directors has also voted to endorse our Public Policy Statement.

Good news:

We now have confirmation that the Arizona 98 are back on the waiting list so we are keeping an eye on this issue.

Thanks to all who have sent letters and made phone calls to Arizona's Governor and State Legislature.

Governor says transplant funding restored
Reporter: Craig Smith
Source: TUCSON (KGUN9-TV)

How to pay for the state Medicaid programs has been one of the most emotional debates in the state capitol.
Last year's budget cut low-income people out of state funding for life-saving organ transplants.
Now that lawmakers have passed this year's budget, there's debate over whether transplants are covered or not.
Restoring state money for medical transplants has been one of the most emotional issues this session. The decision to knock low income Arizonans off the transplant list brought the state criticism from around the country.
The budget restored transplant funding.

We called Governor's spokesman Matt Benson to pin down the answer.
KGUN Reporter Craig Smith: "The question's been raised whether transplants are truly restored in the budget, yes or no?"
Matt Benson: "Yes. Transplant procedures have been restored as part of the budget and it's effectively immediately upon the Governor's signature."

Some of the Medicaid changes require Federal approval but Benson says there's enough savings in other parts of the Medicaid cuts to cover the transplants.
The governor's spokesman says if Federal officials reject the Governor's Medicaid revisions a lot of negotiation will ensue with Federal authorities and a new plan will emerge. Exactly how that will affect the budget will have to wait for what sorts out.

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LI TRIO Picnic with the Ducks!- Long Island TRIO hosted our annual Suffolk event at the LI Ducks baseball game on August 17, 2011.

The Long Island TRIO singers performed our nation's National Anthem at the beginning of the LI Ducks Baseball Game and helped promote the imporance of saving lives with organ donation awarenes.

This year's outing included the pre-game "All you can eat" picnic area with hamburgers, hot dogs, chicken, ribs, roasted corn, tossed salad, Pepsi beverages, Entenmann's cookies, potato chips, snacks and watermelon.

Following the picnic, we took our preferred seats in the ballpark and the Long Island TRIO Singers performed the National anthem.

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UPDATE:

Organ-donor bill named for our friend Lauren passed the Senate but did not pass in the New York State Assembly!

Lauren's Bill would require driver's license applicants to check "yes" or "not at this time" in the organ-donor box on the form. Currently, filling out the information is optional in New York State.

ALBANY — A bill named after Stony Point girl Lauren Shields, who had a heart transplant just over a year ago, unanimously passed the Senate this week on her 11th birthday.

The legislation, which now goes to the Assembly, would require driver's license applicants to check "yes" or "not at this time" in the organ-donor box on the form. Currently, filling out the information is optional.

"This bill is so important because it's about saving lives," Lauren said after the vote. "Today is my birthday and the greatest gift that I can get is to be sure that everyone needing a transplant gets their gift and enjoys many more birthdays. Lauren's Law will accomplish this."

After the vote, Senate Majority Leader Dean Skelos, R-Nassau County, and other senators, as well as Senate staff, threw Lauren a small birthday party with a cake, roses and balloons in a Senate conference room.

Sen. David Carlucci, D-Clarkstown, said he met the well-spoken young advocate at an event where she was telling her story and urging people to sign up as organ donors.

The two teamed up and she agreed to lend her name to the bill, he said.

"Unfortunately, New York state lags far behind most states when it comes to participation in the Organ Donor Registry," Carlucci said.

Roughly 9,600 people in the state need life-saving organ transplants, but only about 13 percent of eligible New Yorkers were registered as organ donors in 2009, according to a 2010 report from Donate Life America. The national average at the time was 37.1 percent.

Also that year, only 11 percent of the 3.8 million people who received driver's licenses and non-driver IDs registered as organ donors, the report said.

That put New York in last place among the 25 states that reported the data and the District of Columbia. The highest rate was in Colorado, at 64.4 percent.

Other states that implemented laws similar to what is proposed in New York saw dramatic increases in donor rates, Carlucci said.

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Long Island TRIO-Legislative Initiatives

Lauren Shields and her wonderful parents are Long Island TRIO members who have a desire to volunteer and help in any way they can. They are very generous with their time and I think you'll find that as you get to know Lauren, you'll be speaking with a very special young lady who has received the Gift Of Life and wishes to give back every day.

Lauren was a guest speaker at LI TRIO's 2011 Donor Rose Garden Ceremony.

Lauren's Law is named after 10 year old Lauren Shields who received a heart transplant in March 2009.

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Senator David Carlucci (D-Rockland/Orange) announced the introduction of life saving legislation, Lauren's Law. Lauren's Law is named after 10 year old Lauren Shields who received a heart transplant in March of 2009. Lauren's Law encourages people to become life saving organ donors by adding a section to the New York State drivers license application that will require applicants to chose "yes" or "not at this time". Applications will not be valid unless this section is filled out. Currently, there is an organ donation section on the application but it is not required to be filled out.

"I can't stress enough how absolutely critical it is that we find a solution to the low donor enrollment we face here in New York State," Senator Carlucci said. "Every day lives are lost because donor organs are not available. We cannot just sit by and let this happen anymore. Lauren's Law will make people consider organ donation, hopefully growing the organ donor list and saving lives."

"I don't know who my donor was but I hope to find out some day. They are the angel that saved my life," Lauren Shields said.

"As a parent is was so difficult to watch my daughter's health go from perfect to failing so quickly. While she lay on life support, I looked out the window many nights wondering if it would be the night that she would be saved. Words cannot express how grateful we are to the donor's family," Jeanne Shields, mother of Lauren said.

2011
Senator David Carlucci (D-Rockland/Orange) announced the introduction of life saving legislation, Lauren's Law today. Lauren's Law is named after 10 year old Lauren Shields who received a heart transplant in March of 2009. Lauren's Law encourages people to become life saving organ donors by adding a section to the New York State drivers license application that will require applicants to chose "yes" or "not at this time". Applications will not be valid unless this section is filled out. Currently, there is an organ donation section on the application but it is not required to be filled out.

"I can't stress enough how absolutely critical it is that we find a solution to the low donor enrollment we face here in New York State," Senator Carlucci said. "Every day lives are lost because donor organs are not available. We cannot just sit by and let this happen anymore. Lauren's Law will make people consider organ donation, hopefully growing the organ donor list and saving lives."

"I don't know who my donor was but I hope to find out some day. They are the angel that saved my life," Lauren Shields said.

"As a parent is was so difficult to watch my daughter's health go from perfect to failing so quickly. While she lay on life support, I looked out the window many nights wondering if it would be the night that she would be saved. Words cannot express how grateful we are to the donor's family," Jeanne Shields, mother of Lauren said.

Kidney Exchange Program Reports First Transplants
A U.S. pilot program that helps arrange kidney exchanges had its first success this week when two participants received new kidneys.
The United Network for Organ Sharing was launched in October to assist "kidney paired donation," where a person donates a kidney to a stranger so that their relative or friend can receive a kidney in return, the Associated Press reported.
On Monday, the project's first transplants were performed in Lebanon, N.H. and St. Louis. Kathy Niedzwiecki received a kidney from Rebecca Burkes, while Burke's fiance, Ken Crowder, received a kidney from Niedzwiecki's sister-in-law, Catherine Richard.
The new national program includes 77 transplant centers that will submit information about patients and donors to a database.
There are fewer than 17,000 kidney transplants performed in the U.S. each year, but experts believe the kidney exchange project could lead to 2,000 to 3,000 more transplants annually, AP reported

Hoyer Statement on Final Passage of Medicare Physician Payment Rate Extension

For Immediate Release: December 9, 2010
Contact: Daniel Reilly 202.225.3130

WASHINGTON, DC – House Majority Leader Steny H. Hoyer (MD) released the following statement after the House passed a year-long extension of the current Medicare physician payment rates. The bill will now go to the President’s desk for his signature:
"I am pleased that today the House passed a year-long extension of the current Medicare physician payment rates and will now send the bill to the President’s desk for his signature. While this legislation will provide seniors with the security of continued access to the physician of their choice and our physicians with at least one full year of SGR relief, this remains a long-term problem that requires a permanent solution.

More Details on Doughnut Hole

You can view and download this wealth of information with regard to the Doughnut Hole in 2011.

In just a few short weeks, the doughnut hole will begin to gradually close although it will take until 2020 for the hole to be closed. Until now, consumers who reached the doughnut hole—the coverage gap in Medicare’s prescription drug benefit—have been responsible for paying the full cost of their drugs. But starting next year, these consumers will receive a discount on drugs they purchase while in the gap. This change to the Medicare drug benefit, also known as Part D, gradually phases out the doughnut hole through the year 2020, when it will be completely eliminated. In 2011, people who enter the gap will receive a 50 percent discount on brand-name drugs and a 7 percent discount on both generic drugs and drugs compounded at the pharmacy. Furthermore, the 50 percent discount will count toward consumers’ out-of-pocket limit, which is used to determine when they get out of the doughnut hole and enter catastrophic coverage.

Also as a result of the ACA, the Social Security Administration (SSA) published an interim final rule regarding the assessment of higher Part D premiums for higher-income Medicare consumers beginning next year. From 2011 through 2019 individuals who have modified adjusted gross income (MAGI) at or above $85,000 per year and couples whose MAGI is at or above 170,000 per year will be subject to additional premiums for Part D. The premiums will be assessed on a sliding scale that is pegged to income levels. The extra amount will, in most cases, be directly deducted from the individual’s Social Security check. While the income thresholds of $85,000 and $170,000 will be frozen through 2019, SSA may change them after that year.
The formula used to calculate MAGI is based on federal taxes filed two years prior to the year when the income-related premium assessment takes place. As under Part B, the rule states that individuals may request that SSA use more current tax data to calculate MAGI if they have experienced a major life-changing event, as defined by the regulations, or may appeal the misapplication of an income-related premium expense.

Thanks to MRC for the answer to this question:

I know that the Part B premium goes up every year. What will the premium be in 2011?

Part B is Medicare’s outpatient insurance. You must pay a premium, or monthly fee, to have Part B. The standard premium will go up to $115.40 in 2011, but this increase won’t affect most people. Most people will pay the same premium they paid in 2010.
There will actually be three Part B premium amounts in 2011. Which one you pay depends on when you got Part B, whether your premium is taken out of your Social Security check, and your income.

It might seem strange that you pay a different Part B premium than someone else for the same coverage. This happens because federal law says your Social Security check can’t decrease as a result of your Part B premium going up. This is called the “hold harmless provision.”

Since your Social Security benefits won’t increase for 2011, that means your Part B premium also can’t go up if you get the premium automatically deducted from your Social Security check. Raising your premium would cause your Social Security check to shrink, which the hold harmless provision doesn’t allow.

This is the second year in a row that “hold harmless” applies to most people with Medicare because there’s no increase to Social Security benefits. The result is that most people will keep paying the 2009 standard premium amount. Others will pay the 2010 or the 2011 standard amount.

If you’ve had your Part B premium deducted from your Social Security check since December 2009 or earlier, you’ll pay $96.40 per month in 2011.

If you started getting your Part B premium deducted from your Social Security check in 2010, you’ll pay $110.50 per month in 2011. You fall into this category if you signed up for Part B in 2010 and have been getting your premium deducted from your Social Security check.

If you sign up for Part B in 2011 or do not have your premiums withheld from your social security check, you’ll pay $115.40 per month.

The exception to this rule is people with higher incomes. Individuals with incomes at or above $85,000 and couples with incomes at or above $170,000 pay more for Part B and aren’t held harmless. Their premiums will increase in 2011.
If your income and assets are below certain limits there are programs called Medicare Savings Programs (MSPs) that can pay your Part B premium.

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NEW YORK, Nov. 10, 2010
Kidney Chains Link Total Strangers Saving Lives
"The American Spirit:" An Inside Look at a Donor Chain that Connected 20 People to Save 10 Lives
By Katie Couric

(CBS) Updated 11.11.10
Since our story last night, Garet Hil says, 204 people have signed up to donate a kidney and start a new chain. That's a huge jump from the one or two they get on a normal day.
The work of the National Kidney Registry has galvanized 50 centers across the country, transplanting record numbers of kidney patients over the last three years. On Thursday, the momentum will continue with the largest kidney chain to date, a swap that is expected to save 28 lives at the Methodist San Antonio Transplant Center in San Antonio, Texas.

A couple who are on a mission to help took CBS Evening News anchor Katie Couric inside an earlier kidney exchange. They're a group of people bound by selflessness and the American Spirit.

Three years ago, Jan and Garet Hil watched their life unravel when their 10-year-old daughter, Samantha, had complete kidney failure brought on by a rare genetic disease.

"We really have experienced, I think, just about every barrier that you could possibly hit," Jan said.
"Before this diagnosis," Couric asked, "you knew nothing about kidney failure?"
"I knew nothing about it," Jan replied.

"I didn't even know I had two kidneys before this," Garet said. "It was, you know, not on the radar."
They began a frantic search for a kidney. Samantha finally found a good match from her 23-year-old cousin. But the experience inspired Garet to help other desperate families.
To submit an idea for The American Spirit send us an email.

He applied his skills as CEO of a software company to launch the National Kidney Registry - the largest national database of living donors in the country.

"The bigger the swap you can get done, the more people can get transplanted faster," Garet said.
Today, his database holds nearly 100,000 records of people who need kidneys and their loved ones willing to give up one of theirs to anyone who promises to keep the donor chain going.

"That's the fascinating thing," Garet said. "You don't know where it's going to go."

That's what we found when we went inside one of their swaps, saving 10 lives in three states. There were 20 surgeries in all - most of them happening over a 6-day period.

It all started with Max Zapata, from Clovis, Calif., who kicked off this chain as the "good Samaritan" donor. He gave a kidney and expected nothing in return.

"I just really felt that it was something that I needed to do in my heart," Zapata said. "I didn't know where it would go, but that I knew that it would be something that would help someone out."

Zapata gave his kidney to 25-year-old Laura Amador - a vibrant college athlete, whose lungs and kidneys were failing as the result of a rare autoimmune disorder.

"I was scared, I was terrified," Amador said. "How does somebody go from this active college life, to one minute, I can't walk?"

Amador got Zapata's kidney because her brother Paul agreed to donate his kidney to another stranger, Kirk Larson, a 45-year-old geologist.

Larson's wife, Teresa, would donate her kidney to someone on the other side of the country.
"The more involved you get and the deeper you get into the process - it's a totally exciting experience really," Teresa said.
Teresa Larson's kidney travelled over 3,000 miles to New York Presbyterian Hospital to save Melvin Gellman - a spry 83-year-old lawyer from Long Island. Gellman is probably too old to have received a kidney off a normal waiting list.
"It's wonderful. I'm glad I got here," Gellman said. "I've been living for this day."

His transplant was happening because a close family friend, Tonya Nye, was giving her kidney to Maria Polli, a mother who thought she would have to wait seven years.
"I don't know if I could ever thank her enough," Polli said. "It is hard to not be able to do things with your kids when you want to."
The chain of life continued from Polli's husband John to Simeon. From his son John to Lee. From his daughter Lauren to Daniel. From his friend Clint to Fred. From his wife Yvette to Greg. Greg's uncle Johnny Guarnes donated to the last patient in this chain, Mindel Faustino.

Faustino expected to die waiting. But he received a call that Guarnes was his perfect match.
Faustino said, "I hope there's a lot more men like him."
The kidney chain has had a profound effect on Garet Hil. "What we're doing right now, has had more impact than anything I've done, you know, ever."

One year after Max Zapata kicked off the kidney chain, all 10 patients are doing well.
"When you see those people who have come out of these swaps and they've got the transplant, it's a miracle," Garet said.

CBS Videos:

Kidney Chains Link Strangers
Katie Couric has an inside look at a kidney exchange in which 20 people bound by selflessness and "The America Spirit" helped save 10 lives.

Surgeon on Kidney Transplant Chains
Katie Couric speaks with Dr. Sandip Kapur, Chief of Transplant Surgery at New York Presbyterian Hospital Weill Cornell Medical Center, about surgeries he performed as part of a unique kidney swap donor chain program, which unites strangers in order to save lives.

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Study bolsters organ research

By Richard Craver Published: October 30, 2010

Generating functioning human livers through biomedical research is one of the great hopes to address an increasing need for liver transplants.
Researchers at the Wake Forest Institute for Regenerative Medicine believe that they are providing a slice of that hope. They are making a presentation this weekend at a conference being conducted by the American Association for the Study of Liver Diseases in Boston.
The researchers said they have reached a milestone — being the first team to use human liver cells to engineer miniature livers that function like human livers, at least in a laboratory setting.
The next step is finding out whether the livers will work when transplanted into an animal, such as a rat.
“We are excited about the possibilities this research represents,” said Shay Soker, a professor of regenerative medicine and the project director. Dr. Anthony Atala, the director of the institute, also is involved in the research.
“We must stress that we’re at an early stage, and many technical hurdles must be overcome before it could benefit patients,” Soker said.
For example, one major hurdle is learning how to grow billions of liver cells at one time “to engineer livers large enough for patients,” Soker said.
“We also must determine whether these organs are safe to use in patients.”
According to the United Network for Organ Sharing, which oversees the transplant system under a federal contract, there are about 16,200 people on a national waiting list for a liver transplant.
Although researchers are reluctant to put a time frame on their work, they say it is possible their research could result in replacement livers in seven to 10 years. That would make for a research cycle of 15 to 18 years.
Recent developments have expanded transplant options for livers beyond cadavers.
There have been a small number of transplants involving a donor providing a portion of their liver to a recipient, typically a parent to a child. Because the liver has natural regenerative properties, a donor and recipient can have a complete liver within months.
That transplant option is more complex, bringing greater risk to the donor and recipient.
The process used by the Wake Forest researchers involves using animal livers treated with a mild detergent to remove all cells, leaving only the collagen “skeleton” or support structure. The original cells are replaced with two types of human cells: immature liver cells known as progenitors, and endothelial cells that line blood vessels.
The cells are introduced into the liver skeleton through a large vessel that feeds a system of smaller vessels in the liver. The liver is next placed in a bioreactor that provides a constant flow of nutrients and oxygen throughout the organ.
After a week in the bioreactor system, the scientists documented the progressive formation of human liver tissue, as well as liver-associated function. They said they found widespread cell growth inside the bioengineered organ.
The researchers said that the process for the liver cells is applicable to the kidney and pancreas. Bioengineered livers also could be useful for evaluating the safety of new drugs.
“This would more closely mimic drug metabolism in the human liver, something that can be difficult to reproduce in animal models,” said Pedro Baptista, the lead author of the study.
Source: http://www2.journalnow.com

Donor race may impact recurrent hepatitis C in liver transplant patients

Matthew Moeller, M.D., is a gastroenterology fellow at Henry Ford Hospital and lead author of the study.


DETROIT – The race of liver donors may affect recurrent hepatitis C in patients after liver transplant, according to a study by Henry Ford Hospital.
"Patients receiving white cadaveric donor grafts had significantly more aggressive recurrent hepatitis C than those receiving grafts from African-American donors regardless of recipient race," says Matthew Moeller, M.D., gastroenterology fellow at Henry Ford Hospital and lead author of the study.
"This difference was especially marked in African-American recipients and persisted on multivariate analysis."
The study will be presented Oct. 29 at the American Association for the Study of Liver Diseases annual meeting in Boston.
Of patients transplanted at Henry Ford Hospital between 2000 and 2006, 222 were infected with hepatitis C. Of these, 165 were eligible to be evaluated for recurrent hepatitis C after transplant. The study excluded those with patient and graft loss within one year not related to recurrent hepatitis C, patients with advanced fibrosis from other causes, those who did not undergo post-transplant liver biopsy and those lost to follow-up.
Patients were given a recurrent HCV score of 1, 2 or 3. A score of 1 was assigned if the patient had no more than mild portal fibrosis at year one and no bridging fibrosis at any point. A score of 2 was defined as moderate portal fibrosis or focal bridging fibrosis at one year or bridging fibrosis or cirrhosis after three years. A score of 3 was defined as bridging fibrosis, cirrhosis, or graft loss from hepatitis C within three years. Analysis was performed using ordinal multivariate logistic regression modeling.
Results showed that of the 165 patients with a recurrent hepatitis score, 105 (64%) had a score of 1, 29 patients (18%) had a score of 2 and 31 patients (19%) had a score of 3. Of the recipients, 115 (70%) were white and 40 (24%) were African-American; 132 (80%) recipients had white donors and 26 (16%) had African-American donors.
The mean recurrent hepatitis score for the patient donor/recipient race combinations were:
white donor/white recipient was 1.54,
white donor/African-American recipient was 1.89,
African-American donor/white recipient was 1.18, and
African-American donor/African-American recipient was 1.23.
The study showed that having a white donor for a liver transplant, especially in African American patients, was significantly associated with having a higher recurrent hepatitis C score.
Dr. Moeller explained that after adjusting for donor age and sex and patient age, gender, and sex, having a white donor was still associated with a higher recurrent hepatitis score on multivariable analysis. Using all 222 patients, donor race was not associated with overall patient and graft survival.
"The data suggests a graft from a white donor is potentially one more important variable in identifying patients at risk for more aggressive recurrent hepatitis after transplant and warrants further study," said Dr. Moeller.
According to the U.S. Department of Health & Human Services, more than 16,000 liver transplants were performed last year and according to the United Network for Organ Sharing (UNOS), there are currently almost 18,000 Americans on the liver transplant list.

Source: eurekalert.org Contact: Krista Hopson
Henry Ford Health System

Governor Paterson signed the bill into law!

S. 4999-A/A. 10664 are bills that were passed in order to permit an electronic signature to register consent to make an anatomical gift. Long Island TRIO is pleased to announce that Governor Paterson signed the bill into law!
The bill passed the Assembly unanimously on April 27 while Long Island TRIO volunteers were introduced on the Assembly floor, and the Senate on May 12, 2010. The Electronic Signature Act eliminates the need to download, print, sign, address, stamp, and mail the form to the Department of Health.
Donation rates are consistently higher in states where the enrollment process is an easy, one-step process.
The present system is cumbersome and negatively impacts donation rates. Up to 75% of well-intentioned registrants do not register because they simply do not return the paper enrollment. This law facilitates the process of organ and tissue donation and thereby increase the number of New Yorkers who will make an anatomical gift.
Transplantation saves lives and improves lives. Increasing anatomical gifts is an imperative public health goal.
Long Island TRIO is pleased to announce that Governor Paterson signed the bill into law today. Congratulations and thank you Long Island TRIO members for your consistent efforts in this regard!

Our volunteers personally visited with nearly half of New York’s 211 legislators and/or their staff to educate them about the importance of organ, eye and tissue donation and share their experiences with donation. 9,600 New Yorkers are on the waiting list for an organ and only 1.9 million New Yorkers (out of a population of 19.3 million) are enrolled in the New York State Donate Life organ and tissue donor registry.
LI TRIO would also like to thank the New York State Assembly, who passed this bill while we were introduced on the Assembly floor on April 27, 2010 and the Senate for unanimously passing this important legislation. Special thanks to Assemblyman Jim Conte for working behind the scenes and for all of your consistent support and participation in our chapter's events.
Yours truly,
Mike Sosna, President
Transplant Recipients International Organization- Long Island Chapter
Chairman, Public Policy- TRIO International
Email: mike@sosproductions.com

Here is a first person account written by Ed Burki

Legislative Day in Albany April 27th 2010

by Ed Burki

Mike Sosna, Joy Oppedisano and myself agreed to support the NYODN and Coalition initiative to venture to our state capital for Legislative Day on Tuesday April 27th. We had agreed to go by car as opposed to the NYODN arranged bus. ( I personally have been on this trip numerous times and EVERY bus trip resulted in some complications {late bus arrival, getting lost on the second pick-up in Westchester, rush hour traffic, Thruway accidents, etc} so I was grateful that the Board of Directors approved a rental car for our journey. However, even that became complicated as the rental car company never showed up to pick me up and take me to their location.

When I called Mike to advise him he graciously volunteered to drive his own vehicle to get us to Albany. After revising our plans we were on the road by 9:30 and after a pleasant, uneventful trip we arrived in the capital just before noon where we had our 1st appointment with Senator John Flanagan (R C IP) 2nd District. He sat with us where we presented our primary agenda items, the main one being on electronic signature approval. The interaction was warm and enthusiastic and we closed out the meeting by again reiterating the wonderful things LI TRIO does in the community and thanked him for his past efforts in obtaining grant monies for LI TRIO. Next we made it over to Senator Carl Marcellino ( R ) 5th Senate district where we had a brief, cordial visit with the senator and again reiterated out agenda items and closed by reminding him of LI TRIO’s Long Island presence and that we would again, be supporting his Health Fair Day in the Town of Oyster Bay May 15th.

We took a break in the Legislative Office Building room on the 4th floor were NYODN (led by Karen Cummings)provided a box lunch and we had a chance to see other participants, compare notes and see other LI TRIO members like Joe DeMartino who ventured up on the bus! About 2:15 the bus participants had to depart for their ride home while our group was just getting warmed up! We went off for a personal visit with Assemblyman Jim Conte (R C)10th Assembly District, a two time kidney recipient and LI TRIO member where I was able to sit in on a telephone radio interview while Assemblyman Conte educated and concisely brought out the facts and issues on Organ Donation to the interviewer.

We moved on to the senate chambers where Mike had secured us a 3:30 meeting with Senator Kemp Hannon (R )6th District and ranking member of the senate Health Committee. LI TRIO has supported eventsand press conferences inititated by the senator in the past (see our website www.litrio .org for some of these past events). Senator Hannon had prepared for a photo shoot to acknowledge LI TRIO’s efforts in getting the senate to proclaim April as organ donor awareness month. Although the proclamation document was not available for the shoot, Mike was able to ‘magically’ provide a proclamation that was actually issued by the governor’s office for the photo shoot where Senator Hannon was impressed with our political initiatives.
After that we departed from Senator Hannon and rushed over to the Assembly floor where Assembly Jim Conte had arranged to acknowledge LI TRIO’s work in the community to the Assembly while in session. We received a round of applause and another photo shoot which has been distributed to the media via a Press release through Assemblyman Conte’s dedicated Chief of Staff.
We were present on the Assembly floor when Assemblyman Richard Brodsky (D ) 92nd District made the announcement that NY State should become the first state in the nation to pass ‘Presumed Consent’. I was able to introduce the representatives from LI TRIO to Assemblyman Brodsky while in the chamber and congratulate him on his organ donation initiatives (his daughter is a two time kidney recipient).

We left the chamber and while departing still found time to distribute literature with many of the news agencies that report from the capital.

We finally departed the capital at 5:30 after a full day’s efforts. I think I can speak for the group saying that we were totally exhausted and still had to make it home! Mike once again commandeered the ‘ship’ LI TRIO for our journey and I was truly grateful to be just a passenger. When we made it back to Long Island we stopped for a bite to eat and reflect on our day’s accomplishments and efforts. I was in bed just before midnight knowing we had done our very best to promote, educate and make aware many of the people in government that can affect the lives of everyone involved in organ donation.

Would you like to read about our newest LI TRIO member?

Michael is a Nassau County Police Officer. His wife Jen is a teacher and her former student donated one of his kidneys to Michael. Here is the story is Michael's words:

I am writing to you to share my story of “life”. My name is Michael Palazzo; I am 37 years old and a Nassau County Police Officer

Please remember that:

Our meetings begin at 7:30 PM and are held at
145 Community Dr., Manhasset, NY.

TRIO is represented by the Tree of Life. With its intertwining branches, the Tree of Life symbolizes the intertwining of the lives of two human beings, the donor and the recipient,through the Gift of Life. It depicts growth and new life and reinforces the new beginning transplantation gives to the recipient.

<>

Our friend and Long Island TRIO member Mack Steinbock has received the Gift Of Life
Snowstorm liver transplant is a miracle for Long Island woman
BY Samuel Goldsmith
DAILY NEWS STAFF WRITER
Tuesday-March 2nd 2010, Liver transplant patient Maryann Steinbock sits alongside members of the NYPD and Nassau County police force and her medical team from Montefiore Medical Center.
Four police departments, two helicopters, one plane and dozens of plows teamed up to get a Long Island woman to her liver transplant surgery - just in the nick of time.
Cancer patient Maryann (Mack) Steinbock's doctor called late Thursday night to tell his patient her year of waiting was over. A liver was finally available - but there were daunting logistical problems before the operation could occur.
The liver was in Buffalo, the patient was in Nassau County, the doctors were in the Bronx, and more than 20 inches of snow were piling up outside.
"We were very concerned," said Dr. Milan Kinkhabwala, head of the liver transplant program at Montefiore Medical Center in the Bronx. "We only had a 12-hour window to operate and it was going to be very close."
The organ was harvested at 4 a.m. Friday, meaning doctors had just under seven hours to get everything ready and still have enough time to complete the five-hour surgery.
"When I got the call, I couldn't believe it," said Steinbock, 59. "I live all the way out in Atlantic Beach, and I had to get to the hospital, and there was all this snow."
Hospital officials in the Bronx got on the phone with the NYPD, who coordinated with Nassau cops and the highway patrol to give Steinbock and her husband a seamless trip across three counties to Montefiore.
"It was like being in a movie," Steinbock said. "All of a sudden, the police come, and there were these cute motorcycle guys. Everybody stopped traffic and there was even a helicopter."
"The drive normally takes an hour," said her husband, Corey Steinbock, 67. "This time it took 35 minutes. I clocked it."
Nassau cop Rob Prince was tasked with driving the police SUV with Steinbock inside.
"She was very calm," Prince said. "We were a little nervous trying to get there, so she started talking about the Mets to calm us down."
The liver was flown in by plane and helicopter, after getting an escort from state troopers, and arrived at the hospital just before Steinbock did. With time winding down, doctors went to work.
"Once we had everything in place the surgery went very well," Kinkhabwala said. "She's doing very well and should be going home later this week."
Corey Steinbock said the quick improvement in his wife's health is remarkable.
"Last week she was pale and all shriveled up. She looked like a ghost," he said. "Now she's like a blossoming flower."
Maryann Steinbock plans to buy tickets for all of her rescuers to accompany her to the Mets' Opening Day at Citi Field. After that, she'll start planning a larger than usual Passover dinner.
"You're all coming for Pesach," she said to the officers at Montefiore yesterday.
"And this summer I want to ride the cute officer's motorcycle."

Hey
I'm really proud of this article and wanted to share it with you. This is the first time where I think something I did can really make a difference in someone's life. Enjoy and let me know what you think!

Love,
Sam

By Samantha Shepard
Morning News
sshepard@florencenews.com

FLORENCE — On Jan. 30, Michael Sprauve went for a physical at Shaw Air Force Base so he would be eligible to try out for the Wilson High School football team. The doctor signed off on his form because he seemed to be a healthy 16-year-old boy. His blood pressure was slightly elevated, however, and blood work was ordered.

An hour after Michael and his mom, Machell Sprauve, left the doctor’s office, they received a phone call that would change their family’s life forever.
The nurse said Michael’s creatinine level was so high, it indicated renal failure. She said they would have to have his blood work redone as soon as possible.
“I was so confused and panicked,” Machell said.
She took Michael to the nearest hospital, McLeod Regional Medical Center in Florence, and relayed the information the nurse had given her.
On Feb. 4, less than a week later, Michael was diagnosed with nephronophthisis, a genetic, chronic kidney disease that affects children. Nephronophthisis is characterized by fibrosis and the formation of cysts in a specific region of the kidney.
In Michael’s case, those cysts have depleted his kidney function to 30 to 35 percent and landed him on the approved list to receive a kidney transplant.
For Michael, a junior at Wilson, the news came as a shock. For his mother and father, Clinton Sprauve, a retired member of the Air Force, it was the beginning of a trying journey for their family.
“It’s very demanding,” Machell said. But being a math teacher in the same high school where Michael is a student has made it easier, she said.
“He has to take seven-and-a-half to eight-and-a-half pills per day, at different times,” Machell said. “Because I work right there, I can check in on him or be there in case of an emergency.” Michael’s prescriptions include blood pressure medications and supplements to help manage the disease until he receives a transplant.
His lifestyle has changed a lot, Machell said, but he does not let this disease get in the way of being a teenager.
“There’s no reason to complain. It’s not going to help,” Michael said. Instead, he is determined to still do the things he loves.
Since he is not able play what he calls “rough” sports, Michael runs track and plays golf for Wilson.

Also, because he had to stop eating junk food and has to watch everything he eats — from weighing his meat to make sure it is not more than the 7 ounces a day his diet allows or staying away from foods that are high in protein, phosphorous, sodium and potassium — he started cooking healthy meals for his family.
In 10 months, Michael lost 30 pounds, but not his spirit for life.
When he graduates from Wilson in the spring 2011, he said, he hopes to attend Johnson & Wales University in Charlotte to study the culinary arts and eventually open his own restaurant. “I want to make separate menus for others that have my disease or a disease like diabetes,” Michael said.
But his interests and aspirations don’t stop there. He is a member of Tiger Production, the honors chorus at Wilson. He loves to sing, perform and write songs.
Michael and his friends also started a singing group called Star Money Crew, and have recorded five songs and compiled them onto a CD they will start distributing and selling next month.
The Sprauves are working with the Children’s Organ Transplant Association (COTA), a charity organization dedicated to organizing and guiding families and communities in raising funds for transplant-needy patients. Since its start in 1986, COTA has assisted more than 1,300 families with fundraising to meet transplant-related expenses — things not covered by insurance — from almost every state and every economic situation.
COTA helps to guide the family and their volunteers through every step, including organizing and training the campaign committee, planning successful events and activities, working with the media and finding multiple sources of funding. Ruby Charles, the volunteer organizer of COTA fundraising for Michael, describes him as a role model. “I see what he does in church, I see what he does in school. He wants to move on in high school and to college. We want to help him make his dreams come true,” Charles said.
The Sprauves, with the support of teachers and the whole Wilson High community, hold different fundraisers throughout the year, collecting donations at local businesses in coin boxes and organizing a basketball tournament and yard sales. So far, they have raised $800, with the goal of raising $50,000 toward offsetting Michael’s medical expenses. “It’s a slow process. We started this summer,” Charles said.
For now, the Sprauves are doing everything they can to keep their spirits up and to ensure this disease does not define who Michael is or somehow come between him and his dreams for the future. “It’s just a waiting game,” Machell said. “We try to take it one day at a time,” she said.

.....

Drug side effects a key factor in reduced quality of life for kidney transplant recipients

People who have kidney transplants need longer-term support than most friends, relatives or even healthcare professionals realise, according to a study of 160 patients published in the December issue of the UK-based Journal of Advanced Nursing.
Researchers surveyed 55 patients who had undergone surgery in the last year, together with 105 who had had surgery in the last one to three years at the Vanderbilt Transplant Center in Tennessee, USA. They wanted to see if there was any difference in how they perceived factors such as their health, the side effects of medication to prevent rejection of the new organ, social support and quality of life.
"We discovered that, in general, patients reported higher levels of social support in the first year after surgery than they did one to three years after their transplant" says lead researcher Dr Hongxia Liu, who is now based at the College of Nursing at the University of Cincinnati, Ohio, USA. "They also felt more positive about what they could achieve and their ability to cope in the first year after surgery.
"Our findings point to the need for more social support in the later transplant period, together with interventions to alleviate bothersome medication side effects and further research on how to manage them.
"We would also like to see further interventions by renal transplant nurses to help patients cope more effectively in the post-transplant period and make them feel more positive about their health and what they can achieve."
All the patients had a functioning kidney transplant at the time of enrolment, which averaged 4.5 months since surgery in the first group and 26.3 months in the second group.
Participants averaged just under 48 years of age (range 18 to 75), 54 per cent were male and there were no statistically significant differences in age, gender, marital status, race or education level between the two groups.
Sixty per cent of patients who took part in the study had received their kidney from a living donor. There were no statistically significant differences in types of dialysis before transplantation, duration of dialysis, donor type or immunosuppressive medications between the two groups.
However there was a statistically significant difference in the level of transplant-related hospitalisation, with 48 per cent of people in the one to three year group having been hospitalised, compared with 27 per cent of the people who had received surgery within the last year.
The patients' self-reported health-related quality of life was measured using the SF-36 scale, which ranges from zero to 100, with higher scores indicating a more positive result. This showed that people in their first year after surgery has a slightly higher overall physical qualify of life (43.29 versus 42.46) and a slightly higher overall mental quality of life (50.94 versus 50.04) than people who were one to three years post transplant.
Although the overall scores did not show significant differences, researchers found more noticeable differences when they looked at the individual elements that make up the two categories.
The patients' average health-related quality of life declined in relation to emotional role (down 6.43), general health (down 5.31), physical function (down 5.81), vitality (down 4.48), mental health (down 3.03) and bodily pain (down 2.17). But it improved slightly when it came to physical role (up 1.01) and social functioning (up 0.31).
Other key findings included the fact that patients used coping strategies such as active coping, emotional support, positive reframing, acceptance and religion coping more in the early days than one to three years after transplant.
Overall average scores for the Perceived Health Competence Scale (30.23 out of a possible 40) and the Personal Resource Questionnaire (87.16 out of a possible 105) showed that people's perceptions of what they could achieve with their current health and the support they received was high.
However, both levels were higher in the year after surgery than one to three years post transplant, falling from 32.0 to 29.31 and from 90.33 to 85.58 respectively.
Transplant recipients who experienced a larger number of symptoms were more negative about their health and reported that their physical and mental health-related quality of life was lower than those with less symptoms.
The side effects of immunosuppressive medication had statistically significant effects on selected psychosocial variables, such as how they judged their health, what they felt they could achieve, how well they coped and their health-related quality of life.
"Renal transplant patients face many new challenges after transplantation and need to develop new coping strategies and renal transplant nurses can play a key role in that process" says Dr Liu.
"Our research shows that they need to offer more social support to recipients in the later transplant period.
"They also need to provide patients with advice on post-transplant care, immunosuppressive medication and self-care skills, together with initiatives that enhance their positive appraisal of their health, their belief in what they can achieve and their ability to cope effectively."

Source: Effects of clinical factors on psychosocial variables in renal transplant recipients. Liu et al. Journal of Advanced Nursing. 65.12, 2585-2596. (December 2009) DOI: 10.1111/j.1365-2648.2009.05111.x

Long Island TRIO- Organ Donation Awareness Month Legislative Initiatives and Events

The Long Island chapter of TRIO is very lucky to have dedicated volunteers making all of the following initiatives possible. We are pleased to team with our coalition partners inclusive of Senators, Members of the Assembly, NYODN, and Transplant Centers as we travel to Albany to help save lives and truly make a difference.

Long Island TRIO is commemorating Organ Donation Awareness Month as we participate in over a dozen events in April, 2010. Our festivities and events will be followed by a 27 April, 2010 trip to Albany, New York where we have scheduled appointments with New York State Senators and Members of the Assembly in their Capitol District offices.

Our chapter will obtain New York State official proclamations that proclaim April 2010 to be forever known as and referred to as "Organ Donation Awareness Month" in New York.

We will be meeting with Assemblymen and Senators who are working with Long Island TRIO and our coalition partners in order to improve the New York State Donor Registry Of Consent. We will also ask for support from Senators who have promised to meet with us as we teach them about the important of New York State accepting "Electronic signatures" as legal consent in order to make an anatomical gift. This will help our chapter's volunteers who work throughout the year signing up new donors to the Donate Life Registry. We also have a legislative initiative that will ensure that the "Registry choice" is not skipped and that New York State will require all drivers (when renewing their licenses) to either check the box and register (continued on our Upcoming Events page.

Long Island TRIO will present the 2010 Organ Donation Awareness Night at Citi Field as the Mets welcome the Phillies on August 15, 2010.

Long Island TRIO honored Donors and Donor Families at our LI TRIO Donor Rose Garden in our deeded area of Eisenhower Park on Long Island in New York.
LI TRIO also honored one donor in particular who donated one of her kidneys to her student, who is a member of Long Island TRIO.
At the ceremony, Long island TRIO arranged for Sentator Kemp Hannon to present one of New York State's highest awards, "The Liberty Award" to Jennifer Jennifer Mazzotta-Perretti, a teacher, who is also the special education director at the Hebrew Academy of the Five Towns & Rockaway.
"She received her award during a rededication of a donor rose garden planted and maintained by the Long Island chapter of Transplant Recipients International Organization, an organ donation advocacy group."
Source: Sunday's Newsday, September 27, 2009

Long Island TRIO Annual Donor Rose Garden Re-dedication Ceremony
For Immediate Release
From Mike Sosna, Long Island TRIO

Transplant Recipients International Organization
Long Island Chapter

Re-dedication ceremony for the Organ Donor Rose Garden, planted and maintained by volunteers at the Long Island chapter of Transplant Recipients International Organization (TRIO).

The annual ceremony honored those who have given others new life.

Long Island TRIO presented: “Organ Donation Awareness Night” at CitiField. This event was held on August 19, 2009.

Long Island TRIO Member Receives Kidney From His Teacher Story featured in Newsday September 17, 2009 A Lesson For Life Jennifer Mazzotta-Perretti never expected that, after giving students an assignment to write about their experiences doing good deeds, she would have the opportunity to do one herself. One student in her summer creative writing class at Nassau BOCES in Wantagh posed the question: Would you give life to someone else if you didn't have to give up your own? She said yes, she would. Then he asked if she would donate one of her kidneys - to him. Again, she said yes. At the time the student, Kevin O'Brien, didn't need a transplant. Later, when he did, he remembered her answer and asked her again. She pledged that she would, not expecting it to work out because the odds were against two unrelated people being a match. But after a blood donor card arrived in the mail stating that her blood type was O positive - the same as his - she felt compelled to undergo more testing and learned that their match went beyond blood. That's when the single mother of one from Levittown prayed - and decided to go through with the donation. "It was an awesome feeling that I was going to help this kid with more than reading and writing," said Mazzotta-Perretti, 32, who is also the special education director at the Hebrew Academy of the Five Towns & Rockaway. On Sept. 3 at Columbia University Medical Center, Mazzotta-Perretti fulfilled her promise and gave 19-year-old O'Brien one of her kidneys. O'Brien said that after years of feeling tired, he immediately felt energized. "You wake up and you're like, 'Whoa, is this for real?' " said O'Brien, of Oyster Bay. "I feel better than I have in quite some time." When he was 3, blood drawn from a finger prick led to the discovery of an obstruction in one of his ureters - tubes that connect the kidneys to the bladder - that was causing urine to back up and damage the right kidney. Within months, surgeons implanted the tube deeper into the kidney to prevent the reflux. Two years later, the same procedure was necessary for his left kidney. But the surgeries were a temporary fix: Doctors said he would eventually need a kidney transplant. A decade later, on July 1, 2005, O'Brien received a kidney from his father, Neil. But soon after, that kidney began to fail because the drugs he was taking to keep his body from rejecting the new kidney made him susceptible to a virus, which damaged the kidney. His mother, Heidi, wasn't a match for her son and tried to arrange a kidney swap: She would donate a kidney to someone she did match - and who, in turn, would provide a willing donor who was a match for Kevin. That strategy didn't pay off, and Kevin's name was put on a waiting list - where it could have taken him eight years to get to the top. "We were devastated," said Heidi O'Brien, 52, of Oyster Bay. "We had done everything we could do." Then Mazzotta-Perretti called her and said she would give Kevin her kidney. Heidi O'Brien said she was "in awe that a person would do that for my child." "We are so grateful to Jennifer," she said. To pay Mazzotta-Perretti's favor forward, Kevin O'Brien said he wants to work with scientists to clone human organs. He said he also wants to encourage people to donate the organs of their deceased loved ones and pledge to donate their own organs when they die. "Give the organs to someone who can use them," he said. But first, now that his health is improving, O'Brien will have to finish his junior and senior years of high school. Looking back on his quest for a donor, O'Brien said the best thing he did was put his teacher on the spot. "You gotta not be afraid to ask for what you need," he said. "I needed a kidney and I have it." Here is a photo of our chapter's 2009 Organ Donation Awareness Night at CitiField-August 19, 2009 The Long Island TRIO Singers performed the National Anthem at this Atlanta Braves Vs. New York Mets baseball game at CitiField. New York Mets Award Ceremony on the field at Citifield as Long Island TRIO helps publicize the importance of saving lives with organ donation.   A.904-A/S.3910 Source: http://www.hanys.org/ Governor David Paterson has signed into law a bill (A.904-A/S.3910) that sets an order of priority for who makes decisions about organ donation when someone has died. The bill amends the Anatomical Gift Act to allow a broader list of people to make donation decisions for individuals who have, in advance, authorized such decision making. The bill responds to situations where family members oppose organ donation even though the deceased person wanted to be an organ donor. That situation is common when relatives or partners are in grief over the loss of their loved one. Given the shortage of organ donors in New York, the bill seeks to increase the availability of organs for transplant by adding three new categories of people who can make donation decisions: someone who is a designated health care proxy, someone who has been chosen as a disposition-of-remains agent, or a domestic partner. The bill then establishes an order of priority for who determines organ donation. HANYS and Healthcare Trustees of New York State (HTNYS) are collaborating on a new initiative to encourage members to promote organ donation awareness within their facilities and communities. HANYS and HTNYS are working with the New York State Alliance for Donation to provide hospitals, health systems, and continuing care systems across the state with brochures and posters that contain educational information about organ donation. The goal is to increase organ donation awareness across the state over the next several years and engage health care provider employees and members of the community in the process.   After following the above link, you will be able to enter your Zip code in order to contact your Representative. Sincerely, Mike Sosna, President Transplant Recipients International Organization- Long Island Chapter Chairman, Public Policy- TRIO International 5440 Little Neck Parkway Suite 4H Little Neck NY 11362 Tel: 516.902.8111 Email: mike@sosproductions.com Website: www.LITRIO.org Remember and Rejoice   My father and I were invited to speak at and participate in this wonderful event honoring Donors and Donor Families. Our friends at our sister chapter- TRIO Manhattan held the wonderful "Remember and Rejoice" event at St. Patrick's Cathedral on April 4, 2009. We hope you will join us next year at this very special annual Ecumenical Service honoring and remembering donors and their families. -Mike Sosna Recognizing The Brave And Selfless Act of Organ Donation Update:Stephanie Tubbs-Jones Congressional Gift of Life Medal Act (HR 7198). I’m pleased to report that the House of Representatives and the Senate has passed the Stephanie Tubbs Jones Gift of Life Congressional Medal Act. These bills direct the Treasury department to design and produce a commemorative medal that the Department of Health and Human Services will award to organ donors or to a surviving family member. Enactment of this legislation would have no cost to the Federal Government. The medals will be funded by charitable donations and organizations including TRIO and its membership. -Mike Sosna   A Letter from Senator Hillary Clinton to LI TRIO How the Spanish donor system works Long Island TRIO In The News: This article appeared in Suffolk Life on April 16, 2008 TRIO is represented by the Tree of Life. With its intertwining branches, the Tree of Life symbolizes the intertwining of the lives of two human beings, the donor and the recipient,through the Gift of Life. It depicts growth and new life and reinforces the new beginning transplantation gives to the recipient.   LI TRIO Webmaster: Mike Sosna email address mike@sosproductions.com Copyright © 1995-2012 TRIO Long Island Chapter LITRIO.org All rights reserved