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“Saving Lives at UCSF” - Today’s World with Sherry Brown, KOIT 96.5 FM Radio, San Francisco, January 13, 2008.
Sherry Brown (Today's World, KOIT): Good morning and welcome to Today's World, I'm Sherry Brown and my guests this morning are here to talk about something that is very interesting, very exciting and could be a life saver. It is the launch of the Northern California Umbilical Cord Blood Bank campaign, and my guests this morning are Scott Hildula, who's the President of the Joanne Pang Foundation. Good morning, Scott...
Scott Hildula (President, Joanne Pang Foundation): Good morning, Sherry.
Sherry Brown: ...and Dr. Mort Cowan, who is with UCSF. He's a pediatric oncologist and he is also heading up the blood bank effort. So let's dive right in for those of us who aren't well-versed in this. Cord blood. It's from the umbilical cords of newborn babies, right?
Mort Cowan: Well, it turns out that what we need for transplants are what we call bone marrow stem cells, and, in a newborn baby's blood, for some reason there is a very high number of these bone marrow stem cells that are in a baby's circulation and can be collected in the cord blood.
Sherry Brown: So the idea is we save this blood and down the road it could be used for a bone marrow transplant?
Mort Cowan: Yes, and it has. We've been using this for about 20 years now. We've gained that much experience, and we've found that it is quite useful. It can replace bone marrow as a source of these special types of stem cells.
Sherry Brown: And the bone marrow transplant comes into play with leukemia and what other diseases?
Sherry Brown: Now if we've known about this so long, why haven't we been banking this? It seems like a miracle substance that could be the answer to some many prayers.
Mort Cowan: Well, we are. Of course, like every new discovery, it was something that first had to be proven. It takes time and there was really a worldwide effort to set up banks to collect cord blood.
Sherry Brown: Now, Scott, you are the President of the Joanne Pang Foundation, and I know that Joanne Pang, was a child who was sick, and she did not make it. Is that correct?
Scott Hildula: That's correct. She was a little girl who went to school at St. Cecilia's Parish here in San Francisco, and she died of juvenile leukemia at the age of 9 in 2003. And so this whole parish, this group of dedicated parents, teachers, clergy, and her father in particular, Joe Pang, have been inspired to take her story forward. They had a desperate struggle to find first a bone marrow match from a donor and then ultimately tried a cord blood transplant at Duke University, but at that point the cancer was pretty deeply seated. I know Dr. Cowan was a consultant on her case. But we've just galvanized a grass roots effort here in San Francisco. Supervisor Sean Elsbernd is on our side, and, as we saw at the recent rally at City Hall, it's a story that's captured the hearts and minds of a lot of people who are concerned about saving not only children, but adults in the future with this incredibly rich source of stem cells that is just a waste product today.
Sherry Brown: Well, there's so much debate about stem cells and embryonic stem cells. There's no controversy over using the cord blood. Is it more a practical matter of finding a way to keep it and care for it until it can be used?
Scott Hildula: I'll let Dr. Cowan talk to the clinical side, but that is the beauty of umbilical cord stem cells. The collection is non-invasive; they're not controversial. It's a biological material that doesn't offend the Catholic Church or the Bush Administration or the Right to Life movement. It's a benefit to potentially every single individual in the Bay Area and then the world, frankly.
Sherry Brown: OK, but obviously, finding a place to store it and keep it must be a little bit of a problem, because I'm sure the conditions have to be very precise. How do they store it?
Mort Cowan: You're absolutely right. It's a major undertaking, and it's no different than setting up a blood bank where there have to be all sorts of quality control procedures, in terms of evaluating the source: making sure the mother is healthy, the baby is healthy. These are cells that are going to be used for somebody else.
Sherry Brown: So the blood, once it's collected, has to be analyzed, and then, I'm sure, processed in some way?
Mort Cowan: Yes, it's frozen down in a very special way. It actually has to be kept in liquid nitrogen, at temperature, in order to preserve the cells.
Mort Cowan: Yes, it will be in a laboratory at UCSF.
Sherry Brown: What kind of space requirements are we talking about? Is it one room or is it a whole building?
Mort Cowan: No, it's more of a large room. That's what is required.
Sherry Brown: So then all this blood that's been frozen, I'm sure extensive records have to be kept, so that--if needed--you can find exactly what you're looking for.
Mort Cowan: There's a very elaborate system that's been set up nationwide to monitor and store not only units of cord blood but bone marrow cells and so forth.
Sherry Brown: Now the blood bank here is just getting underway. Are there similar blood banks in other parts of the country?
Mort Cowan: Well, these are cord blood banks and there are quite a number of them, and it's rather noticeable that there aren't any of them in Northern California.
Sherry Brown: You would think it would be the kind of thing we'd be on top of, you know? It just seems like with our great teaching schools here and hospitals, we would have been on this sooner. What's kept that from happening?
Mort Cowan: Well, in large part, it's money. These are not money making situations. Cord blood banks have to store a large number of units in order to have enough to have enought to then start to distribute.
Sherry Brown: And where's the money coming from for this cord blood bank?
Scott Hildula: That's why we're launching this campaign.
Scott Hildula: Joe Pang is just a very driven father. He channeled the grief over the loss of his daughter in a very positive way, and he asked me to come along. We started to collaborate on a book project--a very moving book he wrote about his daughter's life and their search for a cure. And we met with pediatric oncologists all over, including Dr. Cowan, and he really wanted to find a positive way to channel this. Dr. Cowan, Roxanne Fernandes, and Marisa Quinn at UCSF Children's Hospital said, "We'll figure this out, we'll get the plan, we understand the technology, we have the base ability here in our bone marrow program. Go out and raise the money." So that's why we're doing it. Carole Migden sponsored legislation that the governor signed on November 11th, and it just seemed like the right time to get out and let people know that we need to raise this money so that we can save lives in the near future. And this blood repository becomes viable with just a few hundred units.
Sherry Brown: Really? Just that many would be a source you could draw upon?
Mort Cowan: Yes, probably between 500 and 1,000 units is what's estimated. You can then start to be able to have enough to provide one, two or more transplants.
Sherry Brown: When you're talking about this cord blood in its frozen state, is it measured in units, like blood from a blood bank, or does it take several donors to accomplish one transplant?
Mort Cowan: That's a good question. Actually, a unit is just whatever you get, and it varies from one collection to another. What we do is count the number of cells. It's really the total number of cells that determines how much can be used.
Sherry Brown: Now aren't there already private cord blood banks where parents can pay to have their own child's cord blood saved for some emergency down the road?
Mort Cowan: Yes, these are commercial blood banks, and those units are being saved for that one child, and that's a good distinction to make. What we're talking about is a public cord blood bank that will be used for anybody who needs a transplant.
Mort Cowan: Absolutely. Joanne was a good example, probably one of the best examples because she absolutely needed the transplant in order to survive or have a chance at surviving. We were unable to find a good match for her.
Mort Cowan: She had leukemia. A very bad leukemia, one that did not respond well to chemotherapy alone.
Mort Cowan: I think right now it's affecting children more than adults, but there is increasing use in adults, and I think probably in the future we'll see it's used more for adults as well.
Sherry Brown: If you're joining us just now this morning, you're listening to Today's World. I'm Sherry Brown. And with me this morning is Scott Hildula. He is President of the Joanne Pang Foundation, and Dr. Mort Cowan of UCSF. He heads up the cord blood and marrow program there, and the idea is to have an umbilical cord blood bank that would be a resource for children and possibly adults that are sick and desperately in need of bone marrow transplants. So right now, we really don't have that in Northern California. Now are doctors from other institutions involved in this or is it just UCSF right now?
Mort Cowan: UCSF is where the cord blood bank is going to be, but I think the unique aspect of this is it's going to involve and will benefit patients all over. Not just in Northern California, but all over the country and possibly all over the world.
Sherry Brown: So it's the kind of thing when someone needs this therapy, doctors get on the phone, they contact people all over...is there a network already set up that you can plug into for matching donors?
Mort Cowan: Yes, the National Marrow Donor Program (the NMDP) which is a federally-funded organization. They really organize banks from all over the world and represent the majority of unrelated donors for transplants that are being used today.
Sherry Brown: Scott, you're out there trying to drum up support for this. How much money is needed to get this really established?
Scott Hildula: We'll we've established a goal of $2.5 million to really get this started up and rolling. In the discussions that we've had, I think if somebody steps forward with a half million dollars, we'll really be getting underway. There is the national registry. What we need the money for locally is to set up the collection mechanism and the lab technicians to do the genetic testing. And then probably, we need to buy a new freezer, and I think it's little more complicated than what you could get at Wal-Mart.
Sherry Brown: You can't just go into a Home Depot and say, "Oh, I like that one with the double doors." You need a pretty sophisticated freezing operation.
Scott Hildula: They can go to http://www.joannepang.org. On the left-hand side of the website, there's a place to donate. They can go in and specifically designate the NCUBB, the Northern California Umbilical Cord Blood Bank, or they can specify other support for families in need. For major donors, frankly, we're going to sit down, Dr. Cowan and I, and probably legal counsel from both sides, and the donor. Our thought is that the check will go into a specific trust account at UCSF.
Sherry Brown: OK, so you need some big donations, the kernel. And from that, a lot of individual donations could really make a difference.
Sherry Brown: Good for her!
Scott Hildula: Charlotte is a wonderful little girl, and she's in the same fifth grade class as Christopher Pang, Joanne's brother. And those are just some of the kinds of stories that we keep seeing popping up. Everytime I turn around and share this story about Joanne Pang and her father and mother and brother's journey to come to grips with this tragedy in the family, they say, "Where can we give money? We want to help out." And we're dedicated, this group. I'm doing this pro bono. This is not a non-profit set up for us to make a living. The women working in our group have husbands and side jobs that support the family. I have a private business of my own, as does our CFO. He's a CPA and runs his own practice. This has an impact on our families, but we are all in it together for a good cause.
Sherry Brown: A labor of love.
Scott Hildula: It is absolutely a labor of love.
Sherry Brown: Now Dr. Cowan, you work with children with cancer. You must just really go up-and-down a lot. There are some really joyful endings. Sometimes--very often, nowadays--kids do get well, right? But often they don't. Do you feel like this would make a huge difference for a lot of kids?
Mort Cowan: Absolutely. The kids that come to me for transplants are kids who have no other hope. These are kids who have failed all other therapies. The transplant is really their only chance to live. When they don't have a match within their family--and that only accounts for 20% of them--so 80% of the kids that might benefit from a transplant don't have a good donor. That's when we start looking for alternative donors, unrelated donors. Again, less than half of them are going to have a good match in an unrelated donor. The rest are going to die. So having cord blood that we could use for transplant would give those kids a chance at life.
Mort Cowan: Absolutely. We started doing transplants back in 1981, the first in Northern California. Now, I'm going to graduations, and I'm going to weddings, and I'll tell you, that's really the reason for doing all of this.
Sherry Brown: Yes, to see a child survive...I've been friends with folks at the leukemia and lymphoma society, and I've just met some wonderful kids who've made amazing comebacks either through bone marrow transplants or other therapies. The good news is that in so many cases now, these childhood cancers are not the end. Kids are recovering with all the stuff that we have. Is it a fairly small percentage of the kids that desperately need this? I think you just said this, but spell it out in terms of the childhood cancers and blood cancers. What percentage would depend on a cord blood bank like this one? I'm asking him to pull numbers out of nowhere, but is it a small group?
Mort Cowan: First of all, to put it in perspective, most kids don't get cancer. I certainly want to make it clear that this is not that kind of public health issue. Of those kids who do get cancer, most of them are going be cured with chemotherapy alone. So it is a small number in a sense, but when you look at the centers such as ours in terms of the number of kids who come for transplants, it still is a significant number.
Sherry Brown: And no child is insignificant. We need to save each and every one of them. It's just so sad to hear of a child like Joanne, who might have been a few days away, who knows. How long was she sick, and how long was she searching for a donor?
Mort Cowan: Eighteen months...within a couple of years.
Sherry Brown: Her cancer was spreading very quickly, then, and there wasn't a lot of time?
Mort Cowan: Well, she was treated with multiple rounds of chemotherapy. Each round would put it into a remission, but then the cancer would come back. And I think that really was the problem. So, ultimately, time ran out, because you use up all the chemotherapy.
Scott Hildula: If we have just a little more time, I do want to talk about the difference between public cord blood donation and private collection. I think it's an important thing for us to cover because there's a considerable amount of confusion out there. Joanne's case is particularly illustrative of this. When Joe and I were meeting early on with Dr. Cowan and other staff at UCSF Children's Hospital, we were in a meeting, and both Mort and I could tell that Joe was troubled. He finally told us, "I had an opportunity to bank my daughter's cord blood with a private bank, and I didn't take it." He clearly was feeling guilty. And Dr. Cowan ought to finish here. You were part of the conversation.
Mort Cowan: Well the problem is that most of the time, those units can't be used.
Sherry Brown: Really?
Mort Cowan: For the same individual, there's really only a small number of cancers in which you have the benefit of using your own, stored cells. And certainly in Joanne's case, and I would say all leukemias, which make up the largest number of indications for transplants that we do, using the patients own cells really may buy a little time but cannot be used for cure. So I wouldn't have even used--nobody would have used--Joanne's cord blood even if it had been banked.
Sherry Brown: So you were able to tell Joe that that wouldn't have made the difference. I hope that gave him a little bit of comfort but you know there's not that much to be had after your child has died. I also understand that the private cord banks are quite expensive, aren't they, for parents to do this?
Scott Hildula: I've heard it runs from $1,500 to $3,500 for the initial collection, then there's an annual storage fee. And I keep hearing stories repeatedly about people who have given birth recently--obviously, the mothers give birth but the fathers have a part in this decision--and there's some fairly aggressive marketing going on out there. And it's usually a financially stressful time for all of us. Emotionally stressful, too. I've been there twice.
Scott Hildula: What I want to emphasize is that this public cord blood bank will be at no cost to the mother (and the father, obviously), but no cost to the donating family, and it will go into a bank that will benefit anyone, or potentially anyone, who needs this. It's a different model, a similar product, but it's a much different model. And I really encourage anyone who's being approached. We're not prepared to take collections today. We need to get this set up, and, trust me, we'll be back on your show letting people know we're ready.
Sherry Brown: I want to hear about it when it's all a reality, I really do.
Sherry Brown: So, some mom, while you're there in the eighth month of pregnancy, and you're looking for something to prop on your belly, read up on this stuff. They're going to hit you with this in the hospital, and you're going to want to know what the best answer is, and, obviously, it's "maybe wait" until it can go into a public cord blood bank like this. It offers so much hope, and it just sounds like a great project. Are you going to have any events where people can come, be entertained, or wined and dined, that kind of thing?
Scott Hildula: We have enough doctors, lawyers, and professionals involved. I'm sure we'd always love to have an excuse to play a little golf for a good cause. We're getting our marketing plan together as we also prepare for the holidays with our families, and I'm very confident we'll be having some kind of public charity event next year.
Sherry Brown: I see a City Hall gala for this. You have support in San Francisco City Hall, so have a party there. Tell them I said it was OK. It sounds like such a wonderful project that we can all get behind. Certainly, parents, mothers and fathers...it's so hard for most people to comprehend what losing a child is like unless they've been through it. It's wonderful that the family of this little girl has been able to turn this tragedy into a way to help, really help, other people to save lives. We just hope that it all falls into place, but it really sounds like that is happening. It's not exactly a hard sell, I guess.
Scott Hildula: No, and people are very receptive, and it is applicable to every race and gender in the Bay Area.
Sherry Brown: That's the other thing we need to touch upon: the ethnic diversity part of it. We live in an ethnically diverse place. Does that mean the blood stored at this cord blood bank would be that much more useful down the road?
Sherry Brown: From every little baby born.
Mort Cowan: And with the diversity in the Bay Area, we can really use that and benefit from that by having a more diverse bank.
Sherry Brown: Now does it just have to be matched by blood type or are you looking for other matching factors?
Sherry Brown: Really?
Mort Cowan: We can get away with that, and it has something to do with the cells coming from a very young baby. It allows us to get away with that.
Sherry Brown: Wow. Well that really is exciting, it surprises me. I would have thought you had to have some kind of very exact match. The possibilities are even greater with the cord blood. We're about out of time, but I want to make sure that people who are listening this morning know how they can get involved personally. So Scott, tell us how we can contact you, how we can contact the Joanne Pang Foundation and help out with this effort.
Scott Hildula: Anyone who's interested in getting involved can go to www.joannepang.org. There's a place to contact us there. They can send an email to me, it's scott@joannepang.org or Joseph Pang. Joe is a great guy. He enlists a lot of folks, and we always need more help and more support, so it's just a wonderful place to go.
Sherry Brown: And bake sales, lemonade stands...great? Scott Hildula: We'll take it all.
Scott Hildula: We'll take it all. We're going to spend it to the best of our ability, 100% is going to go to UCSF to establish this cord blood bank. Mort Cowan: Thank you.
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