Hello and welcome to the Get to Life podcast where we have conversations about Oregon, Tissue and I, O'Nation. I'm Orystio. I'm Joey Boudreau. I'm Sally Gentry.
And how are you? Hey, I'm good. How are you? I'm doing pretty well.
I'm sure I have a show. It's so good to see you all. It's a great month. Yes, National D and supporting donation.
Yes. Some we haven't seen and who knows how long and they want to help and spread the word. How great is that? Yeah, and some that we've never seen before.
New partners, new friends and now they're on our team and you can too. You can share this podcast. Let me tell you what's coming up on this episode. We're talking about the Hope Act.
What is it guys? It's great because it's helping to save more lives. We're going to tell you all about it right here on the Get to Life. And then Lori, what does an all time great LSU Tiger?
Ooh, two times Super Bowl champion. Having common with organization. You'll find out. Well, I kind of a little bit.
He's a looker. I'm going to stay tuned to hear all about this, right? What do you have to be? Absolutely.
And always will honor a hero. Yes, all coming up right here on the Get to Life podcast. I hope that you share what you hear here. We hope that you go out and make a difference.
When it comes to donations saving more lives, we try to make it as easy as possible. Absolutely. You can find us on any of your favorite podcasts out. And listen, we're out there on social media.
You can tag us, donate life Louisiana. That's where we're on Facebook. If you're on Twitter, Instagram, we're at Donate Life LA. One stop shop there.
And what we talk about here on the podcast, you can see in pictures there on social media. And you can always reach us at 5046486483460. And remember, when you sign up to Get Your Grovers license or renew it, make sure you get a heart on it. Yes, especially this month.
That's what we're trying to push. We're trying to increase that registry, save more lives, make life happen. You can be our partner in that and you can start now. All right, guys, hang on to your hats.
Ready for another episode? Let's do it. Here we go. At the top of the Get to Life podcast, guys, we talked about the Hope Act.
Right now we're going to talk about implementing the Hope Act, what's behind it and where we're moving forward. We're actually bringing in an expert. Yes, we are, Laurie. When the Hope Act was signed in 2013, we didn't exactly have an I Dream of a Genie that can just snap in and have everything just implemented.
Fortunately for us, we've got Dr. Christine Duran, who is one of the co-leads in the study, basically the implementation of the Hope Act on the line with us. Hey, Doc, how are you? Hi, how are you?
It's a pleasure to be with you today. Thank you for coming on. I've been, of course, reading up on the Hope Act for the last few years, being the Chief Clinical Officer at LOPA, trying to figure out how we're going to implement it ourselves. And I wonder what got you interested in helping out with the project?
So I am an infectious diseases doctor at Hopkins and my specialty has always been HIV infection, as well as transplant infection. So I take care of persons living with HIV who need a transplant. And as many of us in the field were always looking for ways to do more life-saving transplants and with the Hope Act, it opened up a whole new possibility for organ transplant donors. So I started working with Dr.
Segev here at Hopkins to put Hope into action, so to speak. I failed to mention Hope Act. It's something that we're familiar with in the organ recovery world, but it stands for HIV Organ Policy Equity Act. So that was implemented in 2013.
And I can't remember exactly what was the previous act that it overturned. So the previous act was part of the National Organ Transfer Act of 1988. And this was a section that was put in at the height of the AIDS scare, and it required us to avoid acquiring any organs from individuals that were known or suspected to be HIV infected. Right.
And of course, back then, HIV, quite frankly, was almost a death sentence in the late 80s, especially in 1988. And throughout the years, it has become somewhat of just another comorbidity. We're having people live the same basic timeframe as they would have. So full disclosure, I saw you speak in February at an AOPO, an Association of Organ Procurement Organization meeting.
And one of the things that struck me is you said you would basically compare it kind of to diabetes and high blood pressure and things. Yeah, absolutely. I mean, we have come such a long way. It's been really a triumph of modern medicine that we've turned HIV, which was, as you said, a death sentence to a manageable chronic disease.
And in fact, if you got diagnosed today and got started on meds quickly, you certainly would die of some other cause of death. I often say, but weren't for the stigma, you would choose HIV over diabetes because the medications for HIV are so good. So we've come a long way. We still have a way to go, particularly in the area of stigma, but it's certainly not the death sentence it was, which is why the hope back makes so much sense and really reverses what was an antiquated lie.
Dr. Dr. Drant, I'm wondering when you are working with your patients, are their families aware that they are HIV positive? And if so, could you perhaps give us some ideas or hints on how we could handle informing families of this situation?
Yes, that's a great, great. As you can imagine, the decision to tell someone about your HIV status is a personal one. I have patients that are very comfortable with it that have told all of their loved ones, friends, family. But on the other hand, there are patients who have not disclosed their status for a variety of reasons.
When it comes to this situation where there's an opportunity for someone to pass on the gift of life and you might be in a position where you're potentially telling a family member who didn't know a lot of things might come up. And I think it's totally normal for there to be scenarios where a family member doesn't know and when they find out they could have a lot of different reactions to that. And of course, you guys have been working hard and diligently ensuring that all of the largest barriers are crossed. What would you say the biggest hurdles that you faced early on in the implementation were?
So I think we're continuing to encounter new ones every day. Just kind of going back to the beginning. So as you mentioned, the whole back was passed in 2013 and here we are in 2017. So what's happened in between?
The whole back itself required three big things to happen. The first was they had to reverse the ban on federal law and that took two years to happen. So it was until mid 2015 that that federal ban got reversed on the books. Then the whole back allows these transplants, but it only allows them under research studies.
So the second thing that had happened was they actually published research study guidelines or criteria. Those were developed by the NIH, the FDA, the CDC, even the public had an opportunity to comment on those guidelines. So that also took several years and those guidelines didn't come out until November 2015. And then the Oregon Procurement and Transportation Network had to change all of their policies.
So you can imagine it's no simple feat to go from taking every precaution to avoid using organs from donors with HIV to an out and outputting into place new policies that allowed these organs to be used. So all of that took some time as well. So it really wasn't until the end of 2015 that all those parts were in place and in 2016 we opened our first study. So that took quite a bit of time.
So I assume you're working with a team and when you talk about transplanting organs, the articles that I read it was mostly kidneys and just recently a liver. So I guess tell us about that research and what you guys have been doing. Yeah, so it is quite a large team and the team includes transplant surgeons, liver doctors, kidney doctors, infectious disease doctors, nurses, epidemiologists, HIV viral experts, you can imagine the whole gamut of clinical care folks. And then obviously partners also on the organ procurement organization side.
As far as organ types, we are doing both liver and kidneys currently and in the first year we did both liver and kidneys. The first hope transplant happened in March of 2016 and that was a donor who donated both a liver and a kidney. So first in US HIV to HIV liver and kidney happened back in March. Amazing.
And now how many HIV to HIV positive donors have we had in 2016? The first year there have been a total of 11 hope donors and that has led to a total of 26 transplants. That's right. So you are a mix of kidney and liver transplants and every month we're seeing more transplants happen.
At this stage we're working on the implementation side with putting into place policies and protocols on the ground at organ procurement organizations so that teams can be ready and educated to evaluate these donors. So we expect the numbers to continue to climb. When we started in 2016 Hopkins was the first center to be active. Today there are 18 transplant centers that are active with hope protocols.
It must be so satisfying to you and your team to see what you're able to do to help folks in the past who have just never had a chance. It must be so gratifying. Yeah absolutely. The first kidney recipient in the US was a patient of mine and she had been waiting for more than five years on the wait list.
She was listed at multiple centers so it was just an absolute personal joy to see her able to get off dials as she's doing fantastic. That's wonderful. I'm in charge of changing modifying policies for Lópa and Louisiana and in doing so I've been doing some research and I saw that South Africa was actually has been doing it for quite some time. Are there things that you're able to take from them from a medication standpoint or anything else that helped the implementation go a little quicker here?
Absolutely. In debt to Dr. Elmi Mueller who's the transplant surgeon in South Africa she's really been a hero and a pioneer in the field and she published the first cases back in 2010. So it was really their experience that I think helped motivate the research and the policy change in the US.
Now that we're doing it here we're facing some different challenges than Dr. Mueller did just because the HIV epidemic looks different in the countries and of course South Africa does a much smaller volume of transplants than the US. So I think we're facing new challenges but we're absolutely standing on the shoulders of her as we push the sport in the US. And when we were talking earlier you talked about drug resistance in different types or strains of HIV can you delve into that a little bit about as far as the differences between the US and South Africa?
Yeah so I mean just taking a step back when you think about doing one of these HIV positive HIV positive transplants. The transplant surgery itself is no different. That is not really what the novelty or the particular concern. What we really think about is will our recipient who's getting the transplant be okay being exposed to that donor's virus?
You know is there going to be a problem with matching the donor and recipient's types of HIV? And so what really matters is whether the medications that the recipient is taking will work for the donor's virus. So in general that's the biggest challenge. In South Africa they have a slightly different what we call clade of HIV.
Here in the US we mainly have HIV subtype B and in South Africa they have subtype A and subtype C. The same medications work for subtype A, B and C. So really what matters is drug resistance and in South Africa they have less drug resistance because they have less access to medications. In the US part of having access to many many different HIV medications is that sometimes people will develop drug resistance if they can add a patient the right way.
So what I'm hearing is that the HIV virus has to match from the donor to the recipient. It can't just be you know anyone with HIV to anyone else with HIV is that right? Yeah and the big question is does the donor have a drug sensitive type of HIV? Or might the donor have a drug resistant type of HIV?
And if it's a drug resistant type of HIV is it going to be controlled by the medicines that they're taking? Because HIV immunocompromises the patient and then of course with transplant medicine the primary goal of the medication is to immunosuppress. So how will these two intertwined when working with HIV medications? So that's really the primary question in the field a decade ago when we asked can HIV positive patients even get kidney and liver transplants.
So talking about just using HIV negative donors at that time. So since 2001 we have now accumulated a good amount of data that shows the answer to that question absolutely yes HIV positive patients can get kidney transplants, liver transplants and they do very well. They do not seem to have more immunocompromising infections and this was actually a surprise. We thought as you did that perhaps they would be more susceptible to getting infections.
In fact what we found was they were a little bit more likely to get organ rejection which was the exact opposite of what we expect. We have found some ways to get around that organ rejection. We think it's probably from drug interactions that we've learned about but again the answer to your basic question is transplant safe for HIV positive individuals absolutely and in fact HIV positive individuals are more likely to die on dialysis or die while waiting for a transplant so I think their need is even greater. And we're only going to learn more.
We talked about these recent transplants so these folks agreed to be followed for years to come so that we can learn more. Yeah absolutely these individuals have all joined research studies as I mentioned the whole transplant only happened under research and they're very brave individuals to kind of go where no one else has gone before. I think our results today show that this is safe it's working well and we will continue to follow them quite carefully over several years before we sort of revisit this and see if it can be expanded beyond the research realm. Amazing and if folks want to learn more about this I know that we just Googled your name and we Googled the topic but is there a place where you would send folks for more information?
Yeah absolutely so if folks want to learn more about the hope and action study they can go to transplantepi.org and that is our research groups website on the website there will be links to hope hope and action or you can just Google it and you should be able to find us. You're also free to provide my contact information because we're open to questions concerns we want to hear from folks. That's great. Yeah we learn from you today so let's transplant this down transplantepi.org and to make it easier why don't you contact us at info at lopa.org if you have any specific questions then we can get those answers from Dr.
Durand and pass it on to the gifted life group. We have some more information that we're going to be sharing with all of you coming from Dr. Durand as well in the next episode of the gifted life so we appreciate it Dr. Thank you.
Thanks for being with you. Okay guys we just heard all about the hope back how does it play out in the community we have a Louisiana expert in the gifted life studio. Hey Dorian. Hello guys Dorian Gray Alexander live with us here in the gifted life podcast studio we appreciate you guys Dorian host a popular radio show here in Louisiana 102.3 FM it's called proof positive they talk music New Orleans and people living with HIV so if you want to learn more w hiv FM.org that's w hiv FM.org so when you hear hope back I know you've done your own research but what does that mean to you.
So it gives hope to folks like me who are living with HIV you know in the past we could not donate organs and so now it appears like we can. That's very important because because as we we age some of the drugs that we take to keep us alive and also healthy really can create havoc on both our kidneys and also our liver. And you've been a donation advocate. Yes I have a long time.
Can you tell us why do you have a personal connection why is this important to Dorian. It just makes sense because you know because we have these organs and some of them can be shared while you're alive but of course I mean if you are unfortunate enough to not survive trauma but your body can still help help folks and also give that gift of life to someone I think it's great. Yeah and so I'm out in the community and we always talk about getting folks to increase that donor registry by signing up. Yeah.
We always say don't rule yourself out. Absolutely not. And now you can help us share that message right. Yeah I would love to you know it's important so people living with HIV now we we have skin in the game of both receiving organs but also to donate them.
So I encourage anyone who is living with HIV to you know as you say don't rule yourself out and also register and also to talk about that with your you know loved ones about the fact that you want to donate parts of your body to perhaps save someone's life. Yeah make life happen that's what we talk about here on the podcast. When the whole pack was passed in 2013 it was such a huge step forward for us in the organ recovery and organ donation world previously we had multiple times where we would attempt to recover organs and then we'd find out later that they were HIV positive and it was a shame because clearly they could have been an organ donor just as easily as others you know of course there was a stigma that dates back into the 80s and the early 90s and now we all recognize especially in the medical field that it is just it's simply another comorbidity. It's more along the akin to the lines of diabetes and high blood pressure and things and you can live for years and years.
So for us we we're so excited with the passing of the whole pack and we see that there are maybe 10 or 20 more people each year just in the state of Louisiana that can potentially donate organs and save lives for others and when you brought up the point about how you're living and you've got friends who are living for a long time but the medicines are harsh. Right now people are living a very long life now we are faced with not dying from HIV but dying from strokes and from kidney failure and from MC and from a whole host of other things which you know whenever those organs be become damaged it is now possible with the right circumstances because because although the hope that allows people who have HIV to donate those organs it also restricts the person who's going to receive those also is a person with HIV but whenever you are virally suppressed you're in care. The chances of transmitting HIV becomes drastically reduced studies have shown that not so much around organ transplantation because we don't have the science or studies to back that up but we certainly see it in general HIV transmission. So as we learn more about these places that are doing these transplants be between two people living with HIV and also let's be clear that it's not that HIV organs are going to be transplanted into the general population it is a very structured approved study research study being done for both people who have HIV and also whenever one has HIV and may need a liver or also kidney a person also with HIV and now donate that and that's really exciting because we know that sharing one you know kidney with someone especially if you have two healthy ones can change a person's life.
Opening up a whole new world always say that you never know what's going to happen tomorrow right? It's happening Dorian. It is here and it has been years in the creation of that and there were some ground concerns but also some that just didn't make sense and now that we know that the treatment is very effective you know the chance to change 20 to 25 lives here in our state is really an amazing thing. I think changing itself makes folks nervous and starting to start doing it right but I think of the possibilities just a possibility that these are great.
And Dorian I'm wondering you have this show proof positive and see why because you've got knowledgeable good. Absolutely and you know many of our listeners may not be familiar with what your show is about would you please tell us a little bit more about this. So I have been doing the show now for about two years and it started you know just being asked whenever the station began and that is WHIV 102.3 FM they asked if I would do a show about living with HIV and I'm like so you want the stutterer to do a show about a talk show about living with HIV and I thought I said sure I'll do it. So you know so I may have blocks I you know I may speak in this very odd way but it's important that that people with HIV and also those who love them and are affected by this virus know that we can live very long healthy lives and also in the spirit here in New Orleans we are about living.
We are about eating too much. We are about you know and a little booze now and now into bed. So you know so we have a pretty rough lifestyle here. It's like fun.
Rough and fun. So when you add on to that drugs that and damage organs along with our lifestyle which is not always the most healthy you know you might end up with with with the need to have a new heart a new kid a new live or who knows what else you know. Oh great for you for getting this word out to people that may not even have any idea that this was a possibility for them of course. I'm also to thank you all as well.
It's very important that folks know that they can donate their organs even if they have HIV and you know so you guys can tell tell me and tell us about how that can be done and where folks can go. I know that on our driver's license we can check that box and that's a great place to start. But it also involves of course talking to loved ones. So with that they know what your concerns are and also can support you in that decision you donate a life saving organ.
I think that's just a wonderful piece of information right there. A few years ago I worked with an agency that provided case management services for folks with HIV. Yeah and that was way back in the day when many did not tell their families because of being ostracized or their friends because you know and their health was just being afraid. That's it.
Yeah absolutely so this is just a great way to get the word out. I'm just so encouraged to hear things like this. Thank you. And here in Louisiana we get a little red heart on our license if you visit OMB you said yes if you're listening across the country or in the world you can go to register me.org and then you can let us know that you want to be a donor but having those conversations with your family is of the utmost importance.
I do want to go back a little bit and talk about history because we met you in a fun and usual way. A crazy way in New Orleans. That's the only way to do it I think. So I am a part of an all male dance group all the 610 stompers.
We are known pretty much across the country now. Professionals from all walks of life. Yeah yeah you know doctors obviously wonks like me. I mean attorneys so on.
So we're about 120 guys strong. Love the outfits by the way. We are guys guys of Mirth and Girth lessons. So we bring joy and fun.
We're a non-profit that helps raise funds for other non-profits. And so I contact you guys and say hey we're looking for a non-profit that maybe we can donate money in your name. Tell us more about what Lopa means. And that's been great since then.
Great partnership. You guys are a great party. Obviously from New Orleans you'd have to. We love the short shorts and the dikshoots and costumes and the costumes.
You think you can show us a couple of. It's not a costume. It's a uniform. It's like seals and like the saints.
We wear a uniform. It's not a costume. Not to go to your party I did wear a costume. Oh correct.
So that was a part of you think maybe you could show us some moves. I would love. I absolutely would love. We might share that on our social media but we do thank you Dorian for teaming with us.
Again proof positive is radio show. WHIV that's FM 102.3 FM or WHIVFM.org if you want to continue this conversation with Dorian or maybe have questions. Info at Lopa.org send them here. We can put you in touch with Dorian or answer them on our podcast but it's all about teamwork.
It's all about education. It's all about saving more lives. Thank you guys so so much. Thank you.
As in every podcast we'd like to honor hero. Today we'll be honoring Anthony Richard Eichmann. Yes and we learn about Anthony through his family. They send us this information.
A life cut short but filled with many adventures. Tall tales, tragic endings, drama mamas, CD bars, loving people and devoted animal companions. This was a life of Anthony Richard Eichmann who became a hero on November 4th 2016 after donating two kidneys and a liver to lucky people who live a better life due to his offerings. They tell us Anthony was a gypsy, a wanderer, a nomad.
He grew up in Pennsylvania. He was a lord to New Orleans, Louisiana to make a better life for himself. He made many colorful friends that became family. He loved animals and took in mini-strays.
He enjoyed nature and the outdoors. Photography was another window to the world for him. He loved seeing and experiencing new beautiful places. His loss is deeply felt and the memories we all have made with him will live on and sustain us.
You can read more about Anthony's story. You can see the pictures that his family has shared with us and you can learn about other heroes on our website. And that's lopa.org. Is it our heroes page?
And now we pause. I say thank you to Anthony for the gift of life. Here on the podcast we talk about building our team. We want to get as many people involved with spreading donation facts increasing that registry as possible.
We read a local event in Baton Rouge, me and Sal. Yeah. Jerry S. J.J.
Robertson who's in need of a liver transplant was signing his LSU themed football cards and we happened upon a heavy hitter in the sports world. We just thought he was cute. Yes, that's true. But you may see beyond that because he also played before or something.
Yeah, something big. Right. Let me just tell his name is Corey Webster. Corey Webster.
Look at the smile on his face like these ladies. Oh, who know who that guy is? Well, as an LSU avid LSU fan of course, he is one of the guys that brought back the magic back in the early 2000s and got us our first national championship in my lifetime. And then he became a big time NFL player.
He played for the Giants for probably eight to ten years or so. And he was a pro bowl player. He was one of the elite defensive backs even in the polls. That's what you and I were talking about at the event.
But we were kind of day showy because he smiled at us and he just so handsome. He smelled nice. He was talking about donations so positive. I didn't know why that makes me like he was a sport guy.
So let's listen. He did a little something for us here on the podcast. Hi, my name is Corey Webster two times Super Bowl chant with the New York Giants. Also one time collegiate chant with the LSU Tigers.
And I'm here supporting Oregon donation and you should be a gift. It takes life to save life. My guy J.J. is out here waiting for a liver.
So be a help. So we appreciate Corey taking the time out to do that. He also spoke at the event and just push that folks learn about donation and that we increase that registry and hopefully we can save lives lives like J.J. That's his new buddy.
But just a really neat guy. He wasn't about his superstar status. He was just there to help in any way that he could and we like that. And so he's part of our team now.
We claim him that football guy. We talked around the football Joey like some tips and stuff. I'll show you. Yes.
Hopefully you'll come around again and we hope that you too are part of our team info at loba.org if you have any questions or five or four six four eight three four seven. We want to hear from you as well and hopefully use your audio on the podcast because you make the difference. Another episode of the gifted life in the books guys. Yes it is.
We certainly want to applaud and thank Dr. Christine Duran for her work on the whole back and the implementation of the project. The future. Yeah.
And being able to potentially transplant so many more patients and recipients you know through the whole back. Incredible. One person making the difference. It is.
It was great to have Dorian Gray Alexander on. He's such a positive advocate. Great personality. He showed us how to dance and dance.
We did. I don't know. We have to check out the video. We felt like we look cute doing it.
I'm an audition. But he was patient with us. But you know that was one good thing. And then he talked about his show that he does prove positive.
Very nice to have him on and we enjoyed him and his teaching. Yes. Another partner in the community here in Louisiana and listen. Save the date.
April 21st we're going to tell Dorian about it blue and green day. This is when we let everybody know about organ eye and tissue donation. So from blue and green hair to our outfits. Sally does her toes.
You're doing your toes. You're toast. Yeah. We don't want to see that one.
Sally says. Yeah. Some people get bow ties for their dogs. Some people paint signs.
Some people plant flowers and blue and green. But it's April 21st. That's when we want to see those pictures on social media. We want you to share them with us.
So donate life Louisiana at donate life LA that's Twitter and Instagram. I mean we want to see all of this and we want to start spurring healthy conversations about donation in the community. Anybody can do this easy project right. You can start working on it today.
But get involved. Go out and do something today. This would be it that you don't normally do to help us make life happen. This is a production of the Louisiana organ procurement agency.
Aloha and gifted life hosted by Lori Steele. Goy Buudrow and Sally Gentry. Our producers are Kirsten Heinz and Shalom Caraway. We are recorded, engineered and mixed in our Metery Louisiana studio by Troy Perez.