JRI - News and Events - Vermont Times

	JRI IN THE NEWS
Wednesday, July 28, 1999 A Gift of Life By Daphne Walker (This article appeared in the July 28, 1999 Vermont Times. Copyright New Market Press. Used with permission.) At 30, James Redford had his first liver transplant. Within six months, he would have another. That was 1993. He is now healthy and the founder of the James Redford Institute to Promote Transplant Awareness. He told a crowd at the University of Vermont recently that he was very lucky to have had two chances to save his life. His doctor told him that if he needed the transplants today, he would have to wait three times longer and would not have survived. Redford came to Burlington recently with the award-winning documentary his organization produced, The Kindness of Strangers. Having traveled to more than a dozen film festivals around the country since last fall, including Telluride and Sundance, the film has been purchased by HBO and will air September 23. Following six families whose lives are touched in some way by transplantation, the 104-minute documentary leaves an emotional impact on viewers not offered by clinical explanations. Maro Chermayeff, the film's producer, director, and editor, gained the trust and confidence of her subjects to a such a high degree that viewers share some of the most intimate moments of grief, frustration, fear, bereavement, relief, and joy these families experience over a roughly three-year period. Through candid conversations, support groups, and doctors' visits, the audience is drawn into these people's lives and ordeals. As viewers, we attend bereavement groups for the parents who lost a beautiful, vibrant, 20-year-old daughter, Melissa, to a car accident and donated her organs. We follow the daily routine of Robina, a mother of two who had a heart transplant, then, during filming, experienced a rejection that she was able to manage. We meet a young widow still in shock, whose husband's organs saved another's life. We see the lengths ordinary folks have to go through to raise the money to help pay for medical treatment. Ages of transplant recipients and their donors range from Amber, now 7, who had her transplant at one-and-a-half, to Pete, who had his at 40. Pete's ordeal is the most closely followed as we are with him from the beginning when he is still a functioning, working individual while he is waiting to get a transplant and remain until he has safely recuperated. Throughout the film, Pete's health fails dramatically, yet he must wait again and again through continuous health crises until he nearly lapses into a coma. Only then is he moved to the number one spot on the waiting list. We watch Pete's liver transplant surgery and as he wakes up in the intensive care unit, where he thinks he has been in a car accident. We walk through the hospital corridors with the doctor who tells his wife and family in the waiting room that Pete has survived. Waiting for a transplant is excruciating for both patients and their families since there are not enough organs to match the demand. As one doctor in the film puts it, "You can't just order a transplant." It may take 18 months or more of deteriorating health before an organ becomes available. More than 60,000 Americans are currently on the waiting list; twelve die every day while waiting and 18 more are added. Getting a transplant requires the death of someone else whose organs, must, qualify and, which are a perfect blood and body match. Often, people sign donor cards but fail to tell their families their wishes, which can catapult a family in crisis by having them make a difficult decision. So, while 85 percent of Americans approve of organ transplantation, only 35 percent actually become donors. Ultimately, it is up to the family to carry through their loved one's wishes. "Sign your license, tell your family your wishes, then forget about it," said Chermayeff. Redford, who suffered from primary sclerosis cholangitis, is healthy today. He contends with taking daily medication and undergoing monthly lab checks. Because a transplanted organ may be rejected at any time, organ recipients must follow through with proper medical care and a healthy lifestyle throughout their lives. Aside from producing documentaries and educational kits to increase organ transplant awareness, Redford is a screenwriter. He has written for studios and production companies and is also a writer and correspondent. His original script, Hearts and Bones, starring Darryl Hannah and Kiefer Sutherland, is in post-production. It follows the struggles of a rodeo family and a man's struggle to maintain his identity. He is adapting novelist Tony Hillerman's book Skinwalkers into a screenplay, as well. And, he is polishing a piece on the life of an ordinary musician - the type who lives with a creative passion, but who will never rise to pop star fame. Redford is able to live a semi-private life in a small town in northern California with his wife and children where not everyone recognizes his resemblance to his father, Robert Redford. His mother, Charlotte resident Lola Van Wagenen, is also in the media business. She co-founded Clio, Inc., a new media company that specializes in producing CDs, documentaries, and interactive web pages about history. One sister is involved with the Sundance catalog; his youngest sister is an actress. Redford and Chermayeff came to Burlington as part of a collaboration between the Vermont Film Foundation and Fletcher Allen Health Care (FAHC). Dr. Jeff Reese, FAHC's transplant surgeon and Pat Burds, Vermont representative for the New England Organ Bank, joined the filmmakers in a post screening panel discussion. "Movies like this will help organ donation. We need to keep promoting organ transplantation at the public level. This is a happy movie, a really good movie," Reese said. Several ethical dilemmas surround transplantation, including: the high cost, how sick one has top be to get one, where one gets one, and post operation expenses. Reese explained that the high cost of post transplant medicine, while better than 10 years ago, prevents some patients from continuing their medical care and may contribute to some of the failed graphs. A bill introduced in Congress may help cover these costs. Chermayeff explained how it is the patients in the middle income bracket who suffer financial setbacks from undergoing this surgery and often have to conduct private fundraising. Recovery can take a year, and when combined with the time spent sick while waiting, a person may be out of work for a long time. There is a current national debate which could redefine the way organs are distributed, said Burds. Now, the country is divided into six regions and the sickest two categories from the region where the organ is donated are the first recipients of each region's organs. Under the proposed changes, a national list would be created which erases regional lists and organs would travel to the sickest person first, regardless of where they live. A Vermont organ could go to a Californian even though there are Vermonters waiting, for example. One of the concerns about this proposed change, aside from the risk of transportation, is that only the very sickest patients would receive transplants and that those in not quite as critical shape - those whose chances for survival might be stronger because they are somewhat healthier - will have to wait until they, too, become more ill. The James Redford Institute will continue to promote The Kindness of Strangers while it airs on HBO and will search for grassroots organizations to show it. The institute has several educational kits for schools that are age appropriate, as well. "I'm not a crusader or a zealot," Redford said. "I am simply presenting a story to people and want people to make their own decisions. It is an intensely personal experience. You can't legislate organ donation or take out the personal decision. If people start thinking about it in a meaningful way, then I've gotten my message out." For more information about the James Redford Institute's educational kits, call (804) 327-1438 or check out their website at www.jrifilms.org. For more information on organ donation, call the New England Organ Bank's local office at 656-8454. RETURN TO CURRENT NEWS

Wednesday, July 28, 1999

A Gift of Life
By Daphne Walker
(This article appeared in the July 28, 1999 Vermont Times. Copyright New Market Press. Used with permission.)

At 30, James Redford had his first liver transplant. Within six months, he would have another. That was 1993. He is now healthy and the founder of the James Redford Institute to Promote Transplant Awareness. He told a crowd at the University of Vermont recently that he was very lucky to have had two chances to save his life. His doctor told him that if he needed the transplants today, he would have to wait three times longer and would not have survived.

Redford came to Burlington recently with the award-winning documentary his organization produced, The Kindness of Strangers. Having traveled to more than a dozen film festivals around the country since last fall, including Telluride and Sundance, the film has been purchased by HBO and will air September 23.

Following six families whose lives are touched in some way by transplantation, the 104-minute documentary leaves an emotional impact on viewers not offered by clinical explanations. Maro Chermayeff, the film's producer, director, and editor, gained the trust and confidence of her subjects to a such a high degree that viewers share some of the most intimate moments of grief, frustration, fear, bereavement, relief, and joy these families experience over a roughly three-year period. Through candid conversations, support groups, and doctors' visits, the audience is drawn into these people's lives and ordeals.

As viewers, we attend bereavement groups for the parents who lost a beautiful, vibrant, 20-year-old daughter, Melissa, to a car accident and donated her organs. We follow the daily routine of Robina, a mother of two who had a heart transplant, then, during filming, experienced a rejection that she was able to manage. We meet a young widow still in shock, whose husband's organs saved another's life. We see the lengths ordinary folks have to go through to raise the money to help pay for medical treatment. Ages of transplant recipients and their donors range from Amber, now 7, who had her transplant at one-and-a-half, to Pete, who had his at 40. Pete's ordeal is the most closely followed as we are with him from the beginning when he is still a functioning, working individual while he is waiting to get a transplant and remain until he has safely recuperated.

Throughout the film, Pete's health fails dramatically, yet he must wait again and again through continuous health crises until he nearly lapses into a coma. Only then is he moved to the number one spot on the waiting list. We watch Pete's liver transplant surgery and as he wakes up in the intensive care unit, where he thinks he has been in a car accident. We walk through the hospital corridors with the doctor who tells his wife and family in the waiting room that Pete has survived.

Waiting for a transplant is excruciating for both patients and their families since there are not enough organs to match the demand. As one doctor in the film puts it, "You can't just order a transplant." It may take 18 months or more of deteriorating health before an organ becomes available. More than 60,000 Americans are currently on the waiting list; twelve die every day while waiting and 18 more are added.

Getting a transplant requires the death of someone else whose organs, must, qualify and, which are a perfect blood and body match. Often, people sign donor cards but fail to tell their families their wishes, which can catapult a family in crisis by having them make a difficult decision. So, while 85 percent of Americans approve of organ transplantation, only 35 percent actually become donors. Ultimately, it is up to the family to carry through their loved one's wishes. "Sign your license, tell your family your wishes, then forget about it," said Chermayeff.

Redford, who suffered from primary sclerosis cholangitis, is healthy today. He contends with taking daily medication and undergoing monthly lab checks. Because a transplanted organ may be rejected at any time, organ recipients must follow through with proper medical care and a healthy lifestyle throughout their lives.

Aside from producing documentaries and educational kits to increase organ transplant awareness, Redford is a screenwriter. He has written for studios and production companies and is also a writer and correspondent. His original script, Hearts and Bones, starring Darryl Hannah and Kiefer Sutherland, is in post-production. It follows the struggles of a rodeo family and a man's struggle to maintain his identity. He is adapting novelist Tony Hillerman's book Skinwalkers into a screenplay, as well. And, he is polishing a piece on the life of an ordinary musician - the type who lives with a creative passion, but who will never rise to pop star fame.

Redford is able to live a semi-private life in a small town in northern California with his wife and children where not everyone recognizes his resemblance to his father, Robert Redford. His mother, Charlotte resident Lola Van Wagenen, is also in the media business. She co-founded Clio, Inc., a new media company that specializes in producing CDs, documentaries, and interactive web pages about history. One sister is involved with the Sundance catalog; his youngest sister is an actress.

Redford and Chermayeff came to Burlington as part of a collaboration between the Vermont Film Foundation and Fletcher Allen Health Care (FAHC). Dr. Jeff Reese, FAHC's transplant surgeon and Pat Burds, Vermont representative for the New England Organ Bank, joined the filmmakers in a post screening panel discussion. "Movies like this will help organ donation. We need to keep promoting organ transplantation at the public level. This is a happy movie, a really good movie," Reese said.

Several ethical dilemmas surround transplantation, including: the high cost, how sick one has top be to get one, where one gets one, and post operation expenses. Reese explained that the high cost of post transplant medicine, while better than 10 years ago, prevents some patients from continuing their medical care and may contribute to some of the failed graphs. A bill introduced in Congress may help cover these costs. Chermayeff explained how it is the patients in the middle income bracket who suffer financial setbacks from undergoing this surgery and often have to conduct private fundraising. Recovery can take a year, and when combined with the time spent sick while waiting, a person may be out of work for a long time.

There is a current national debate which could redefine the way organs are distributed, said Burds. Now, the country is divided into six regions and the sickest two categories from the region where the organ is donated are the first recipients of each region's organs. Under the proposed changes, a national list would be created which erases regional lists and organs would travel to the sickest person first, regardless of where they live. A Vermont organ could go to a Californian even though there are Vermonters waiting, for example. One of the concerns about this proposed change, aside from the risk of transportation, is that only the very sickest patients would receive transplants and that those in not quite as critical shape - those whose chances for survival might be stronger because they are somewhat healthier - will have to wait until they, too, become more ill.

The James Redford Institute will continue to promote The Kindness of Strangers while it airs on HBO and will search for grassroots organizations to show it. The institute has several educational kits for schools that are age appropriate, as well.

"I'm not a crusader or a zealot," Redford said. "I am simply presenting a story to people and want people to make their own decisions. It is an intensely personal experience. You can't legislate organ donation or take out the personal decision. If people start thinking about it in a meaningful way, then I've gotten my message out."

For more information about the James Redford Institute's educational kits, call (804) 327-1438 or check out their website at www.jrifilms.org. For more information on organ donation, call the New England Organ Bank's local office at 656-8454.

RETURN TO CURRENT NEWS