Hello and welcome to the Get to Life podcast where we have conversations about working in tissue and eye donation. I'm Laurie Steel. I'm Joey Woodrow. Good morning everybody.
I'm Sally Chantry. I'm Tom. It has been a long, national donate life month. It has been filled with so much fun, so much inspiration, just amazing from flag raisings to Blue and Green Day to our largest ever donor family picnic and beautiful weather that day, huh?
Absolutely. 2,000 people. That is amazing. And you know, in all of these years, well, it sounds like I've been here a long time.
Yes, I have. You have. In the last 16 years, this is the biggest turnout. People that I had not seen since maybe back in 2001 came to picnic.
Many of these families are just so grateful to be able to be recognized for what their loved one was able to do to help others and help save lives. It just was phenomenal. And you know, some of these folks that I was talking with, it's only been a few months up until, like I said, some that are from 2000. But every family member and somewhere, as you can well imagine, more emotional than what others were because of the loss and being so just right in their face still.
This is just turned out to be a wonderful day. It was wonderful. I love it. I love the team uniform, if you will, the shirts with the loved ones on there.
I love seeing the smiles. I love hearing about the memories. It's just been a great month. And a lot of it's thanks to you guys and you out there helping us.
And that's why we work so hard here in the studio to spread more donation facts, information. And we have a Power Pack show today. Oh, and Lori, one of the things I need to throw out here is that our donor family quilts, this is when the family designs, XA Square, and then it's put onto a quilt panel. We had new books put together by two of our really wonderful coworkers just turned out beautifully.
Shout out to Theresa and Emily on that. Totally. And I just want to encourage people, if you've not made a quilt square, even if you have made one for our quilts, do it again. We'd love to have more quilts to be able to share with the families.
Yeah, we were getting great feedback from that at the donor family picnic. So be a part of our team, be a part of our family, and you can experience this as well. Today on The Gifted Life, Joe? Yeah, today we're going to talk about how a new hepatitis medicine has allowed us to smash through the glass ceiling of organ donation.
Wow. And we'll also hear from a recipient who's living her life to the fullest thanks to all these new advances in medicine. It is amazing. And all we ask that you do is spread the word, it's really just sharing the podcast when you download it.
And we hope that you rate and subscribe. We try to make it as easy as possible to find this. You can find us anywhere, iTunes, Google Play or whatever your favorite podcast app might be. Yeah.
And I'm on social media, Facebook, or donate life, Louisiana. So a lot of what we talked about, especially during blue and green month or day and national donate life month. See? You'll find there on Facebook, on Instagram and Twitter.
We're at donate life, L.A. Don't forget, 5046483477. We'd love to hear from you. We're going to have to hire somebody.
Do a jingle. I love it. We want you to be part of the podcast. We want it to be interactive because your story matters.
Here we go. Here on the Gifted Life, we always say you never know what's going to happen tomorrow. Change, medication. It's just amazing what can be done to help save more lives.
In the last episode of the Gifted Life, we talked to Dr. Christine Durand. We talked about the Hope Act, HIV, Oregon Policy, Equity Act. She's also working on something else with her partners that's helping to save more lives.
And she joins us again. Hey, Doc. This is Joey again. How are you?
Hi, Joey. Well, a year ago or so, I was thinking when I saw the Hepatitis C medication on a commercial that it basically treated and completely cured Hepatitis C, I immediately could not wait to see what kind of impact that might have on the organ donation and transplant world. And then lo and behold, a year later, you guys are putting that in motion. Yeah, it's been very exciting.
You and I were both thinking the same thing. How can we leverage this great advanced in medicine to save even more lives? And that's what I love about infectious diseases is that we have these breakthroughs where we're able to cure diseases. And then in this case, we're able to even expand the potential organs that we can consider for transplant.
So it's just been a fantastic development. So those of you out there who aren't quite as familiar, we've been transplanting Hepatitis C donor into Hepatitis C recipients for quite some time. And here in this state, we do have a higher Hepatitis C population. And so we see it quite often.
Once we know that a patient is Hepatitis C positive, usually the options are much narrower on the potential recipients out there. We'll still generally be able to transplant the liver as long as it hadn't been damaged too much by the Hepatitis. And then occasionally we can transplant the kidneys, but that was pretty much it. So, and then of course I see the Expander 1 project, which is just mind-blowing to people in our profession, and that you guys are going to be transplanting Hepatitis C positive into Hepatitis C negative potential kidney recipients.
What brought that about? As you say, we've had quite an experience with doing Hepatitis C positive into Hepatitis C positive. We know that that works, that these patients do. But you know, only about 10% of individuals who need a kidney transplant have Hepatitis C.
So we've actually had this, something you don't see in organ transplant a lot, but a surplus of Hepatitis C positive donors compared to recipients who were willing to accept those organs. And I don't have to tell you this, but it's absolutely heartbreaking to have to, you know, walk away from an organ from a gift of life, and we really hate to do that. So when these drugs came along for Hepatitis C that were essentially carrying 100% of people who took them, and not only were they curing people, but they were pretty easy to take with very few side effects, very well tolerated. You only need to take them for about 12 weeks.
We thought that this was just an opportunity we couldn't walk away from, and we wanted to see if we could use these medications to prevent Hepatitis C infection in candidates. So for someone who needs a kidney transplant but doesn't have Hepatitis C, if they enroll in our Expander 1 trial, they will be transplanted with Hepatitis C kidney while they are taking those very effective Hepatitis C medications. So really the goal is that they will never get infected. They'll take the medications as if they have the virus, they'll take them for the full course.
But if they're working the way we think they are, the medications should prevent their liver from ever being infected with Hepatitis C virus and also allow them access to a transplant more quickly. That is amazing to us in our field knowing how often, but really good organs that could be going to save lives, and they're not simply because of the Hepatitis C virus. And I truly applaud you for taking this on, and I can't imagine the impact that it's going to have in the future. What are the early returns, the early results that you guys are seeing with doing the treatment like this?
Thank you for your encouragement. So Hopkins isn't the only program, there's a couple of other programs that are doing pilot trials with this, 10 is one of them as well. And the early experience, so both of us are kind of in the early phases of our pilot trial, we're going to present the results at our national transplant meeting, which is April 30th, we'll both present the results. And so I think they'll become public shortly after that, but I can just say a lot of people are wondering just generally how it's going and here at Hopkins the trial is going fantastic.
So hopefully present the full reach of the public in the next of the recipients are all doing well and we've done 10 transplants and that was our goal so we should be soon. Dr. Rand, on another level, there are many people that when they hear that someone has HIV or they have hepatitis C, there's kind of that stigma, if you will, that well, you know, they must be drug addicts or are they homeless on the street, you know, they're not taking to a pair of themselves. Would you please clarify that for our listening audience, because I think it's important that people understand that this can cross all lines of whether it's race, class, gender, sexual orientation.
Absolutely, I'd be happy to have infected diseases, one of the reasons I went into it is, you know, they're really the great equalizer. If you're human, you can get an infectious disease and we really should not use these as a label to put people in a box. You can get these viruses in many ways. So hepatitis C in particular, you may have seen the posters, you go to the airport today, you'll see these posters, were you born between 1945 and 1965, you should get tested for hepatitis C.
And that's because our baby boomer generation has very high rates of hepatitis C, this virus can be transmitted through the blood, but it can be transmitted from sharing razors, sharing toothbrushes, people you know in the military, EMP, doctors, healthcare workers. So, you know, just by being virtuous, being human, you can contract some of these infectious diseases. HIV, as many of you know, more difficult to contract, you really need to have mixing of blood, usually IV drug use or you need to have sexual contact. So, you cannot get HIV by kissing, hugging, sharing utensils.
But for all of these, there are no innocent or guilty victims here. These are infectious diseases that we get by virtue of being human and we should, I think, do everything possible to remove the stigma in the shame, particularly in a time where we have fantastic treatments for both. Thank you for that information. Yeah, and look what we're able to do.
So the Expander 1 program, I guess I want to talk about the participants that you guys have called on and then what's that conversation? They know exactly what they're walking into. They want to work with you and then that lessons that the time on the list because someone waiting on a kidney could be years. Absolutely.
It depends on the region, but in particular parts of the country where we are, especially if you're older, have diabetes, you might be waiting on the list for five plus years. We started with a target population of people who have higher chances of mortality on the wait list or are more likely to die while they're on dialysis and so those would be older individuals in a part of the country like here where they have a long time in the way. Dr. Desai, who's the surgeon on Expander, does a very careful job of speaking with potential candidates about the study.
First he calls him on the phone just to kind of introduce the concept. He encourages them to do some research, talk to their families, their friends. He brings them in for an hour plus consultation where he takes the time to go through what the medications are, what the side effects are. Really puts a lot of thought and time into it and the participants go back to their families to think it over.
And for most of them, they've said, you know, this was an easy decision. The medications are well tolerated, easy to take and I need a transplant. So for many of them, it really has been a great opportunity. So I'm just so excited on this end.
I can't wait to hear what the results were and I especially can't wait to see what's next. Like so do you guys plan on expanding the expander anyway, you know, for liver patients or heart patients or any of the other organs? I so we called it Expander 1 because we're hoping for an Expander 2, 3, 4, and I don't think we'll be the only ones. I think there are other centers in the country.
We'd like to be leading the pack on this, but really what I want to see is more live saved and more gifts of life. Promises and decisions be capped by placing these organs. So it doesn't really matter to me who does them. But certainly I think we started with kidneys because the weightless is so big, but the next logical step or to think about hearts, to think about lungs.
In the liver scenario, if we can just talk a little biology science for a second, the scenario is a bit different because you can't prevent the infection when you give someone a liver with hepatitis C in it. So you can do it. You can give them a hepatitis C positive liver and I think you can very successfully cure and treat that liver, but you will have to give them a whole treatment course. So I think we will do livers as well, but the biology of it's just slightly different.
With other organs, we can kind of use the drugs as a preventative measure, but with liver, we would really just have to treat the whole infection. So I thought, you know, when you were mentioning earlier that they had to get the entire course anyway, so you guys are giving more of an abbreviated course for the kidney potential. That's very interesting. Well, for the first trial, for Expander 1, we're giving them the full course, but the hope is for the subsequent iterations.
Just as you mentioned, since we think it works like Prophylaxis or prevention, the next steps would potentially be scaled. And so we could potentially be scaling back and doing more abbreviated courses. We decided to start, you know, as very conservative, do a full treatment course, but expecting that that will be successful. We may be able to scale back, which would be cost saving if we could do shorter courses.
I understand that medication is expensive. So to be able to give much less of the medication, and of course, thus being much less of a cost, that would have to open quite a bit more doors. I would assume. Yeah, the biggest barrier with the Hep C meds has been the cost.
You probably have read about that or heard about that in the papers or in the Senate halls. There's been a whole lot of controversy about all of that. So a treatment course, three months treatment course is probably around the order of $70,000 or so now maybe a little bit less as more drugs have come to market and there's competition driving the prices down. So that's a big price tag.
But remember, we're talking about a cure. With HIV, for example, the drugs are $10,000 a year for the rest of your life. And for Hep C to see, it's one shot, one course, one cure. So they're expensive.
But the other thing to think about is the expensive dialysis. So if you're getting somebody off dialysis and a transplant, you're saving money there after a year or two, you'll break even. So I think that we'll see cost effectiveness studies come out to show that this is actually cost saving, but a shorter course would also make this more feasible and more appealing, I think, for both the medical community and third-party payers. Wow, we're blown away here.
Is there somewhere where we can visit for more information? We just want to read through what we touched on here today? You can see the description of the trial on clinicaltrial.gov. I think if you search my name or just doctor-desized name or expander.
And again, good old Google, you'll probably see this has been covered on ABC, NBC, NBC, and NBC. A few different news channels, NPR. Stay tuned for when we publish our results as well, and it'll probably be on the American Transmit Congress website. Perfect.
More to come. We love it. Thanks for sharing. Thanks for doing what you're doing for dedicating your life to saving lives.
We appreciate you. Thank you guys for what you're on the ground doing the same thing. Save and lives every day. We appreciate you.
Hey guys, we talked about this expander one program and how it's helping to save more lives, just incredible research. And who knows what'll happen tomorrow, right? We're all excited about this and what's to come. On the phone with us now, we have someone who's taking part in the research actually received one of those kidneys.
My name is Ann. And thank you very much for joining us. Can you tell me what exactly brought you to needing a kidney transplant? I was with a polycystic kidney disease in my early 30s.
This is actually inherited disease. Many families have had this disease. And with a gradual decline in my kidney function over many years, I had to go into dialysis. It got so bad.
And dialysis never went well for me. It was really difficult. Always had problems. I then applied to John Hopkins to get on a transplant list, but unfortunately I was told it could take four to five years before I would receive a kidney.
And I was told that I was not prepared to wait. I had a disease for a long time, but I did not have any problems until maybe the last year and a half, my kidney function kept declining. So you were told it might be four or five and sometimes even eight to ten years before people were waiting for a kidney to get a transplant. So then you get this call from Dr.
Desai about joining potentially the Expander One project. So can you tell me a little bit about how that conversation went? What's a call from Dr. Desai, he's a transplant surgeon telling me that I qualified for a kidney study at John Hopkins Hospital.
So I had a call where being over 60 and not having been on dialysis for too long. He explained in detail about the study and answered my numerous questions in ways that I could easily understand. I really liked what I heard. He explained basically why would we get to be seeing a kidney from a Hep C donor.
And at that time I would be given a new Hep C medication. He also said with this scenario that Hep C risk is minimal, which I just seem to trust this doctor so much. He was just so amazing. Also there would be a little wait time and I would receive a kidney from a much younger donor.
So the good news is Hep C can now be cured. You can hear it all in the radio and TV all the time the advertisements. My husband and I discussed everything in detail. Dr.
Desai questions and concerns. We would curse one with each other. He's always there, a very special man and doctor. But you still had to think about this hepatitis C.
You hear it. How did you decide? Okay, I'm still going to go ahead and jump in with this. I can't imagine the back and forth that you and your husband must have had it.
We were back and forth and had many questions and we really did our homework. We just felt so comfortable with our decision. We had a daughter and she was involved in it. And at the time I was 74 years of age.
What would be my chances of getting a kidney? I had that going for me. I knew problems at all except for my kidneys. And I just thought I just went to go for it.
We talked about it with our decision. So you said yes and then what's the timeline? So we said yes and all I had to do was really wait for the call. And it came in November 19th.
It was six months to the day. I was only on dials at six months. I just can't tell you how so happy I was. And I wasn't afraid.
We just were focused with this decision because we had trust in our surgeon, Dr. Desai. Trust in the hospital. I can see why I'm talking to this world right now.
They are just amazing. A little bit of heaven when you go in there and the post-staff is just so marvelous. So I just had to wait. So I only had to wait like four months.
That's great. How are you doing now? I am doing so well. I feel better than I could ever have imagined.
Fantastic. I feel strong and healthy. I have energy. I didn't think it could be this way.
I just didn't know. Life just began again. I did. It really did because with dialysis I was really losing ground.
I was. I was. But this is a marvelous. I just so happy.
I have an even bigger question for you. Have you or do you think you'll ever get to meet your donors family? I don't know. I think about my donor and including the family very much.
I think I would like to. I don't know who he is. He's deceased. But I just know that he was 30 years of age.
That's all I know. Wow. You're a youngster now. I know.
I know. I know. I know. I know.
I know. I know. I know. I know.
I know. There you go. Are you still taking the hepatitis medications? Is that like a long-term thing or was that just a one-time thing?
They gave it to me right before the surgery. It took me for 12 weeks and that was it. And there was no sign of Pepsi at all. Wow.
And so you're part of this Expander 1 program. You're doing research. You have to follow-up. So what does that like for you?
I have to get a good lab work. I was getting lab work twice a week. Now it's like one. So we can eventually that'll go down to.
I'm not taking that many drugs anymore. I'm down to very few drugs. There will be like three anti-rejection drugs that I will have to take for the rest of my life. But it's so nice to be able to put the staff down there.
The doctor and their nurses. They're so kind to you. It's really good for you to have that sort of experience. Not only were you really getting to the point where you needed this, but to have people who actually care and want you to be better.
I can't help but think that psychologically and emotionally. That has helped you tremendously. I think all that has. I think that's why I have done very well.
I think we have to get the word out here. That's right. And you're helping us. Joining our team.
I love it. Well congratulations to you. And I hope you keep doing better and better and better. So, Ann, if there's somebody out there listening to this and they may fit that criteria for Expander 1, your advice would be.
I would say don't wait. It'll just change your life. You have something on your bucket list Ann. You and your husband go places to see things.
We probably want to spend more time with our daughter. She's far away from us. We'd probably like to go to see her and her husband more often. And travel and just really enjoy life.
I'd like to get to life. Ann, we love you. I can play abundantly. We love that.
We appreciate you sharing your story with us and we look forward to getting updates from you as well. When we started this podcast over 50 episodes ago, we knew it would be very important to have an Honor Hero segment. The day that he rolled that we'll be honoring is Steve Minosall. We learned about Steve from his family, which we love.
His family tells us that Steve was a full-fledged fireman. He fought fires, rescued accident victims, and attended to people needing medical help. There were two major plane crashes in Kenner, Louisiana. Steve was there to assist in recovery of victims and bodies.
Steve moved to Mississippi in the early 90s. He joined the Pearl River Sheriff's Department. While working as a deputy, he joined the Northeast Volunteer Fire Department. He worked his way up to Assistant Chief and took courses in medical assistance.
He then became an emergency medical technician and then an EMS. While working as a medic and first responder, Steve again was able to save more lives. Even though he was injured, saving a newborn, he continued his lifelong love of saving people as a first responder. Steve was fatally injured in an auto accident on March 25, 2008, while driving back home to help save people after spending a beautiful Easter with family.
Steve is missed. Steve is a hero. You can see a picture of Steve. You can read more about him from his family.
And you can learn about other heroes on our Heroes page at Lopa.org. And now we pause to say thank you to Steve for the gift of life. In our listener segment, we take your questions and hopefully provide the answers that you're looking for. This came to us info at Lopa.org.
That's where you can send your questions. Joey, I think this one's for you. Is it? I cannot donate blood because of a medical diagnosis.
Can I still be a registered organ donor? While you most certainly can. Boom. That's it.
Easy answer. Yeah, there are quite a bit of viruses or infections or different things that may impact if you are a blood donor. But of course, for organ donation, it is such a vital need. It is life saving.
There are so many ways that the transplant physicians will be able to treat these problems. So certainly don't rule yourself out. And just say yes. And just say yes.
I like that simple answer there. And you can go to register me.org to sign up today. Now that you've gotten your answer and all of you out there, register me.org is a National Registry. So sign up today.
info at Lopa.org if you have a question you want us to answer. And Sally, thanks for the talk. You are certainly welcome. There you go.
Just say yes to donation. We have another gifted life podcast in April. National Donate Life Month. But so much inspiration.
We increased it on registry. We spread donation facts and awareness. It was amazing. And new partners have joined us.
We want to give a special thanks to Dr. Christine Duran. Or do wrong as we say in South Louisiana. Okay.
All right. I'll be a true pioneer in the industry and for smashing these obstacles. And of course coming on and sharing her experiences with us. And along with that and sharing her experience of receiving a hepatitis C kidney and what it's meant for her and you can just hear in her voice the happiness and gratefulness for this transplant and how now she can spend more time with her family.
Very, very good. I love that guys. And the fact that she doesn't even have hepatitis C. You know, it's amazing that she got this hepatitis C kidney.
And now she doesn't have any shred of the virus. Medicine. The smarts that go into things and bake life out. And I love it.
I love this guys. Now if this inspired you and you want to sign up to be a donor, register me.org today. It takes less than a minute to do that. And then you can join our growing list of folks who want to help make life happen.
Now you, you listen right now. Go out and do something today that you don't normally do to help us make life happen.