Governor Announces Legislation to Increase Opportunities for Organ Donation, Create First-in-the-Nation Living Donor Registry

Governor Announces Legislation to Increase Opportunities for Organ Donation, Create First-in-the-Nation Living Donor Registry

MR. DAWES:

Good morning, everyone. I'm Christopher Dawes, I'm the president and CEO of Lucile Packard's Hospital, and I'm truly honored to have a very distinguished guest here this morning. Let me introduce, obviously, who we have -- I think he goes without introduction -- our governor of California, Arnold Schwarzenegger. And to his left Steve Jobs, CEO of Lucille -- yeah, it would be nice. (Laughter) CEO of Apple Computer. He can have my job, I don't think I want his. (Laughter) Elaine Alquist, State Senator. And then continuing down, Bryan Stewart, president of the Donate to Life California and Ron Busuttil, M.D. and PhD in transplant surgery at the Ronald Reagan UCLA Medical Center. And Chief Daschel Butler, who is the interim BART police chief and a former Berkeley police chief. He's awaiting a kidney transplant and has been waiting since April of 2009.

So, we are just delighted that everyone is here this morning for such an important occasion. And also I want to introduce, or at least acknowledge, that we have some incredible guests right here in front of us. We have in front, in the first three or four rows, children and families who have been recipients of transplantation here at Packard Children's Hospital. And I really want to thank all of you for being here this morning and helping us push through this very, very important legislation.

I also want to make a very warm welcome to those of you who are here today because you have helped perform one or more of the transplants that these children have received. You are members of a diverse and truly superb healthcare team that has helped make Lucile Packard's Children Hospital one of the safest, busiest and most reliable centers for transplantation in the country. Thank you to -- (Applause) And thank you. I think that's really very important. And thanks to you this room is truly filled with a lot of talent, a lot of dedication and a lot to celebrate.

In nearly 20 years, since Packard Children's first opened its doors, we have grown to a hospital known, trusted, for providing successful transplantation to the very smallest and sickest children. Our physicians and transplant teams performed -- many of whom are here today -- have performed the first successful heart and heart-lung transplants in children and continue to advance these and other treatments through research and innovation. Here at Packard, pioneers in transplantation make us one of the few places in the country where patients can receive rare lung and double-lung transplants and where in the future providers can be trained to do so.

In pediatric kidney, liver and intestinal transplant, Packard Children's doctors have led the way to improve procedures such as transplanting adult kidneys into infants, utilizing split-liver donors and pioneering intestinal lengthening procedures and performing successful transplant surgery on some of the very youngest children. Our pediatric liver transplant program is one of the largest and most experienced in the United States and continues to provide some of the best outcomes. In fact, across all transplantation specialties our survival rates are among the best in the country. So I'm truly honored to be here today with such an esteemed group of colleagues.

Also, at Packard Children's Hospital we have an advanced cardiac clinic. Our doctors are testing a new generation of drug treatments that may help avoid the need for a transplant in a child who has heart failure. But these are just some of our efforts to try and improve the ability and the quality of life of children.

So, Packard Children's accomplishments in pediatric transplantation are truly profound and life engaging. I know this just by looking at these wonderful kids in front of me today. They are our inspiration and our motivation to drive transplantation further into the future and to make it easier and more accessible and to continue advancing in research, education and care delivery so that all children can share the dream that all of us have and for those children to be able to live long and normal lives.

I know that our guests that are here today are inspired by that possibility. So without further to-do, I'd like to introduce the Governor of California, Arnold Schwarzenegger. (Applause)

GOVERNOR SCHWARZENEGGER:

Well, thank you very much, Chris, for the nice introduction and for the great work you are doing. And we want to thank you also and the Lucile Packard Children's Hospital for having us here today and hosting this press event and for taking us around and visiting the children in there and having us see firsthand all the great work that you are doing here. And, of course, Lucile Packard is the top of the top, Stanford is the top of the top, so it's always great to come back here and to see all the great work that is going on. So let's give them a big hand again here for the great work they are doing. (Applause)

Then we want to thank also Steve Jobs, our CEO -- I'd like to take your job, by the way. (Laughter) I'd also like to have your stocks, so I just want to make sure that there's no confusion. So anyway but it's great to have Steve Jobs here, who I think was very instrumental in getting us here today and to have us come up with this great bill that will change a lot here in California. And he talked to my wife about his transplant and then my wife talked to me about it and I talked to him about it and we had these great phone conversations back and forth and now here it is reality; we are introducing the bill.

And what I like about Steve is, because he is a wealthy man, we all know that and that helped him get the transplant. But he doesn't want that, that only wealthy people can get the transplant and have a plane waiting to take him anywhere he needs to go. He wants every human being, if you have no money at all or if you're the richest person in the world, everyone ought to have the right to get immediately a transplant. And this is why he has talked to my wife and this is why he has talked to me and put the pressure on us to get this bill going so that we open it up and have enough of the organs available for all the people that are potential recipients. So we want to say -- let's give him a big, big hand for his great generosity. (Applause)

I want to also say thank you to Senator Alquist for being here today and for sponsoring and authoring the bill and for her great work always. Whenever I need something we call her, so thank you very much. Let's give her a big hand also. (Applause)

Then we have Bryan Stewart with Donate Life California. Let's give him also a big hand for being here today and for the great work he is doing. (Applause)

Then Dr. Busuttil from the UCLA Medical Center. He is one of the top doctors, if not the top in the world in transplants. I happened to again, exactly at the same time as we had started the conversation, Steve and I, I sat next to him at the Christmas party that we had. And we had a casual conversation and we started talking about transplants. And then he was telling me about how alarming the rate is, of how many organs they need and the big problem that we have, that one-third of the people are dying before they ever get the transplant and all of those kind of things. So again, I wanted him to be here today and to say a few words also, because he has done such an incredible job at UCLA and is such an expert. So it's great to have you also here, thank you very much. A big hand to Dr. Busuttil.

And I mean, what can I say about Chief Butler? I mean, he is a tough law enforcement man but no matter how tough you are when it comes to, you know, medical conditions -- he needs a transplant, he is waiting for a transplant and so that's why he's here to also say a few words about the need for transplants and the need for everyone to register and to be part of this whole thing. So let's give him also a big hand for being part of this. (Applause)

So, like I said, it is wonderful to be here at the hospital. And this hospital, of course, is healing and is saving so many lives. Because of legislation that we are introducing today, Senate Bill 1395, it will also help save lives. Organ donation is one of the kindest and the simplest and the most generous and the most powerful actions that each and every one of us can take. When you sign up as an organ donor you're immediately armed with the power to save up to eight lives -- eight lives. You also have the power to heal up to 50 others by restoring their sight, improving mobility or healing burns. The list goes on and on, the kind of things that it does.

Yet in California and across the nation, we have a shortage of donors; 100,000 in America, 21,000 alone right here in California, so this is an alarming amount of people that are waiting and that we are short of. One-third of those individuals, as I said earlier, will die before they get matched up to an organ. Imagine if your wife or if your husband or your child or your best friend is on that list. We must take action to increase the organ donor rate in California.

Back in 2005 I signed legislation giving potential donors the option to simply check yes on their driver's license. That has helped tremendously and it has doubled the amount of donors that we have on the list. We are up now to 6 million people. But even though this is a great success rate we need much more.

So now we want to go and push it with SB 1395. It will increase organ-donor rates in California in two ways:

First, it will make California the first state in the nation to create a live donor registry for kidney transplants. The reason why for kidney transplants is because 85 percent of the people that are waiting for an organ transplant, they are for kidney transplants. That's why we need to concentrate on that. And I know that Lucile Packard is a national leader in kidney transplants here for children and so this is why we are here, of course, to introduce this bill.

Second, instead of being voluntary, the DMV applicant will be required to either choose yes and become a donor or choose to consider registration at another time. And so you will hear more about that, how this is going to work.

I look forward to working with Senator Alquist on this very important bill and I urge the legislators to pass this bill. They can have all the debate in the world that they want but pass the bill. (Laughter) So we want to make sure of that, because sometimes it takes them a long time to do things. This is why I always love when I have action heroes here like Senator Alquist, that is pushing them really hard. So we are waiting for that.

And now, a few days ago, let me just tell you, I flipped through the Sacramento Bee and I read about a young man by the name of Stephen Polster. That young man died in a tragic ski accident. Yet unknown to his family, Stephen had registered as an organ donor. Because of Stephen's decision, his tragic death, he gave the precious gift of life to so many others. So in fact the knowledge of this has given comfort to his family as they are mourning his death and his loss.

So I want to just encourage everyone, every Californian, to step up and to follow the courageous example of Stephen Polster. Go to the www.donatelifecalifornia.org and become an organ donor yourself. Create some great action.

Thank you very much. And now I would like to bring out Steve to say a few words about all of this. Thank you very much. Thank you. (Applause)

MR. JOBS:

Thank you, Governor Schwarzenegger. Last year I received a liver transplant. I was very fortunate, because many others died waiting to receive one. Last year in California there were 671 liver transplants but last year there were also over 3,400 people waiting for a liver and over 400 of them died waiting in California.

I was almost one of the ones that died waiting for a liver in California last year. I was receiving great care here at Stanford but there were simply not enough livers in California to go around and my doctors here advised me to enroll in a transplant program in Memphis, Tennessee, where the supply/demand ratio of livers is more favorable than it is in California here. And I was lucky enough to get a liver in time. As a matter of fact, this coming week is my one-year anniversary. (Applause)

So why aren't there more organs available in California? Because in California, like most other states in the nation, you must specifically request to become an organ donor at the Department of Motor Vehicles when you're there to get or renew your driver's license. No one asks you if you want to become a donor. And there's no marketing campaign to make you aware of this opportunity, either, so unless you know about it and unless your specifically ask, nobody is going to ask you, nobody is going to give you this opportunity. And yet even with this obscure procedure over 20 percent of Californians have signed up to be organ donors, which is fantastic. But imagine what it could be if everyone knew of this opportunity.

And that's what the Governor's bill will do. It will simply require the DMV to ask you if you'd like to become an organ donor. That's it. Asking this one simple question may double the number of transplant organs available in California -- one simple question. And that's a very high return on investment, especially for the over 20,000 Californians currently waiting for an organ transplant.

So Governor, thank you for your leadership on this bill. And now I'd like to introduce Senator Alquist. Thank you. (Applause)

SENATOR ALQUIST:
I'm Elaine Alquist, senator, lucky 13th District, Santa Clara County. And I am authoring this bill because I choose life. I'm 65 years old. I'm a Yaya -- that's a Greek grandmother -- grandchildren four and eight years old. And when I'm termed out December 1st 2012 I want to know that I have done something, in conjunction with others, to see that people have the opportunity to live and to have a good quality of life.

I know there are a lot of heroes in this room, people who have received transplants, their families, their doctors, the scientists and others involved in this process. And I thank all of you, because I've had, as a daughter of a Greek immigrant -- my father had a bar in St. Louis -- I've had an easy life. And yes, Governor, I am your action female senator on this bill. (Laughter)

I think the bill has been described pretty well already and it seems really rather simplistic, that on the driver's license renewal that there ought to be a box to say yes, I want to donate, or no, I don't want to.

So simply what this bill does -- well, there are two parts:

The first part is just to say we want to focus the public's attention on donating. There are 21,000 Californians on the waiting list and not all of them will receive the donations that they need, the transplants that they need.

The second part of the bill, which is exciting also, is that it will create, once the bill in amended next week, a live kidney registry. And that's really key. That will be the first in the nation.

So in closing, I'd like to thank the Governor for spearheading this; Steve Jobs, who has had the courage to share his story with us, because we know that not everyone on a waiting list will be able to live. I want to thank Bryan Stewart with Donate Life.

And with that, I would like to introduce Bryan Stewart. Thank you. (Applause)

MR. STEWART:

Thank you, Honorable Governor Schwarzenegger, for inviting me and Donate Life California to be part of this important day. Since the introduction of the Donate Life California Organ and Tissue Donor Registry in 2005 more than 6 million Californians have registered as organ and tissue donors, ensuring that their wish to save lives at the time of death is honored. In that five years' time registered donors in our state have saved the lives of more than 900 transplant patients whose only hope for survival was the generosity of those willing to check yes and save lives. At this very moment, as we've heard, more than 20,000 Californians harbor hope -- that's OK, Jonathon. It's OK. (Laughter) I know, two weeks post-transplant it's tough but he's doing well. (Applause) More than 20,000 Californians harbor hope for the same result, the gift of new life.

Several years ago Gaston Gonzalez of San Dimas, an employee of the California Department of Motor Vehicles, had nearly given up that hope. In 2004, after trying to halt the progress of his kidney disease through changes in his diet, Gaston started dialysis treatment. Looking ahead at a seven-year wait for a deceased donor kidney, his future looked bleak.

Then in July 2006, Gaston's wife Chris was invited to speak at the press conference announcing DMV's partnership with Donate Life California. She spoke of Gaston's three-times-weekly dialysis treatments and the resulting deterioration of his body and how kidney disease not only affected her husband's health but the family as a whole. Her plea was simple; donate life, help families, strengthen our community.

Chris's words were heard by another speaker and DMV employee, Hooshang Torabi, whose wife Karen had suffered from kidney disease and survived on dialysis until their daughter Saba, upon turning 18, donated her kidney. Although a total stranger, born in a different country and of a different faith, Hooshang approached Chris and offered to test as a possible kidney donor to Hooshang -- or excuse me, to Gaston.

Two years later, Hooshang's altruistic offer of a kidney became a reality and now Gaston's health has returned and he continues to serve our state as a proud DMV employee. Thank you, Gaston and Chris, for joining us today. (Applause)

And for you, Hooshang and Saba -- yes, we can applaud. (Applause) We celebrate your spirit of giving and the power to save lives that an altruistic living donor registry promises to harness throughout our state.

But for Hooshang and Saba today is also bittersweet, because 12 years after her transplant their beloved wife and mother is again on dialysis. So once again they, like the families of more than 16,000 kidney patients in our state, are relying on the generosity of Californians to donate life. But even if every actual deceased organ donation opportunity was authorized by a registered donor or the donor's family, we could not keep up with the growing need. It's as simple as that. It's a math equation. Only increased living donation can do that.

The health care professionals who carefully steward the donation and transplant process in our state look forward to the prospect of a state-authorized altruistic living donor registry that says to all Californians living donation is possible, that you can be a living kidney donor. You can save lives and strengthen our communities. Living kidney donation is safe and does not reduce your life expectancy and your confidentiality as a registered donor will be protected at all times.

Donate Life California looks forward to the addition of this groundbreaking tool to help our field fulfill our lifesaving mission and we thank Governor Schwarzenegger and Senator Alquist for leading the way.

I'm now pleased to introduce Dr. Ronald W. Busuttil, the Longmire Professor and executive chairman of the UCLA Department of Surgery. He's the founding chief of their internationally renowned liver transplantation program and over the course of 26 years he has performed more than 5,000 liver transplants. Dr. Busuttil. (Applause)

DR. BUSUTTIL:

Thank you, Bryan, ladies and gentlemen and Governor Schwarzenegger, I really do appreciate the invitation to make a few comments here. I really am honored to be asked to make these remarks, to really demonstrate my unqualified and very enthusiastic support of the Senate Bill 1395, which has been sponsored by Senator Elaine Alquist.

As a transplant surgeon for more than a quarter of a century I have become witness on countless occasions of the joys and miracles that organ transplantation can provide and how it can restore life and productivity.

Let me tell you a little story about Lily. In 1984 Lily was transferred to me from Arizona. She had a very, very large tumor and was on life support. We were very lucky that we were able to find a suitable donor for Lily and Lily did very well. She survived the operation, she did not have recurrence of her tumor. She went to college and she got married 23 years later.

It is the most unbelievable emotional experience that we as physicians can really have. And as I look at these wonderful transplant recipients on the first floor I know that your surgeons and your doctors are very, very proud of how you are doing.

However, despite these joys and these miracles, with almost the same frequency my team and I and the wonderful team here at Packard Hospital have witnessed the absolute heart-wrenching reality when a patient dies for the lack of a suitable organ donor.

And as you have heard today very eloquently, whatever we can do to pass this bill and to increase organ donation, we have to do. The statistics -- you've already heard some of them but I would just like to highlight a few -- are truly sobering. Since 2006 there has been an overall decrease in the number of organ donors. This has resulted in a 14 percent decrease in donor organ transplants in California alone. And California has 20 percent of the patients on the national waiting list. Of those patients in California, 400 of them are children, as you have seen here and they are the most in desperate need of transplantation.

In California the annual number of organ donors is 1,500. You may think that's a lot but if you want to consider the number of patients that die on the waiting list, it's just about the same. It's 1,300. Over one-third of the patients on the transplant list throughout California have to wait more than three years for an organ and, in many cases, that is too late.

At UCLA over these past 10 years we have done 250 liver transplants a year in babies, in adolescents and in adults. Last year we barely made 190. And at this pace, this year we'll be lucky if we do 150. There are just not enough organ donors to go around.

These statistics are clearly very troubling and I think they represent a great problem for the citizens of our state who are afflicted with diseases that are the cause of end-stage organ failure. I think all of us in this room must work together and I would urge everybody here and every citizen in California to support this new legislation that has been proposed by Senator Alquist and endorsed enthusiastically by Governor Schwarzenegger.

Thank you very much for your attention today. (Applause) Thank you.

I would now like to introduce Chief Daschel Butler, the current chief of BART, who himself is awaiting a kidney transplant. Chief Butler. (Applause)

CHIEF BUTLER:

First of all, I want to thank the Governor for his support of this bill, Senator Alquist and everybody here that's here today supporting this bill, because this is such a major bill for those of us who are still in need.

Now, I've been more fortunate than most in that I have some very good friends who are looking out for me and are undergoing testing right now. But from one who has gone through it for only a year -- I listen to some of the stories here today and they tell me, on dialysis for five years, for seven years and so forth and I feel very fortunate in that I've only been on it for one year. But it's an experience that I'd almost have to tell each one of you in person how difficult that experience is, of being on dialysis. Now, for me, I would like to maintain, or get back to a normal life. Being a police chief, you would think, well, you know, healthy, looks healthy and all of that. But the fact is that it's still a great issue, it's a great issue for me.

The Donate Life California Organ and Tissue Registry records the wishes of Californians who wish to be donors when they are deceased. As wonderful as this is, it's still not enough. We need to create a registry for those Good Samaritans who are in a position to donate a kidney. It's time now for living donor registry for kidney donors who want to help.

I thank Governor Schwarzenegger and Senator Alquist for recognizing that people like me need their help. We need the living donor registry. Thank you. (Applause)

And I'll relinquish the mike now to the Governor for any questions and answers.

QUESTIONS/ANSWERS:

GOVERNOR: Thank you very much. Thank you. (Applause) Anyway, if you have any questions -- I know I think a lot of it's been said -- I think everything has been explained. If you have any question about the legislation itself, we have Senator Alquist here, more than happy to answer any of those questions. If there are any other questions, please feel free.

Yes?

QUESTION: Thank you. Who would pay the medical costs for surgery of a donor, kidney donor?

GOVERNOR: Say again?

QUESTION: If someone is interested in donating a kidney altruistically, who would cover the medical costs of surgery?

GOVERNOR: Well, it depends on what insurance that they have. If they have insurance, if it's not -- if it's an emergency -- it really depends.

QUESTION: Their own insurance, right?

GOVERNOR: Right. Any other question? Well, thank you very much, everyone, for being here today. And let's give this hospital here and all the speakers a big hand of applause for being here today. (Applause)

Source