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[MOTIVATIONAL MUSIC] - Hi, I'm Steve Adubato.

Today, we're gonna have an important, compelling, very relevant conversation about organ and tissue donation as we tape this program in the spring of 2021.

We're honored to be joined by Bill Ryan, President and CEO of the Transplant Life Foundation.

Good to see you, Bill.

- Thank you.

- And also a longtime friend of ours, Denise Peoples is in fact a double lung recipient and Hospital and Community Services Coordinator at the New Jersey Sharing Network, our longtime partners in organ and tissue donation.

They're doing the work every day, and her colleague, Sharyn Sawczak, registered nurse, is Director of Clinical Practice and Innovation at the Sharing Network.

Good to see all of you.

- Good to see you.

- Good to be here, Steve.

- You know, people who know us know that we've been committed to organ and tissue donation for many, many years, so the website will be up for the Sharing Network to find out more, but Bill, let me ask you: as we tape this program, what is the state, if you will, of organ and tissue donation 14 months moving forward plus, into COVID?

- Well, you know, COVID certainly has put a whole new twist to the life of a transplant recipient or those waiting for a transplant.

I think the mission still continues.

We still have 110,000 people plus waiting for an organ.

20 of 'em die approximately every day waiting for an organ, so we are, we're moving forward or slowly getting back to normal, but the mission still is alive.

- Denise, let me ask you this.

(sighs) A very close friend of ours just received a double lung transplant, and we're very close to her and know there's a struggle she has faced for many, many years.

Just talking to her the other day, a week in, you hear it, you see it, you sense it, but for you, how long has it been, by the way?

- 14 and a half years.

- Send a message to folks right now, as we tape at the end of April 2021, A, who are waiting for whatever they're waiting for, whatever organ, and those who have not committed to being organ donors for whatever reason or reasons, please send that message out.

- Those who are waiting, Steve, I would tell them to just hold on, just really hold on.

You learn so much about yourself while you're waiting, and don't give up hope.

Try to keep a positive attitude as much as possible, and just really hold on, just hold on.

Think about what you're gonna do, you know, after you get this amazing gift.

Think about how you're gonna give back and those type of things.

Try to keep a positive attitude.

To those who are on the fence, don't really fully understand and know what the effects can be if you become an organ and tissue donor, I mean, if you've registered, get the information.

(computer alarm beeping) That's major.

Get information, and realize that there's no greater gift, there's nothing you can give a person that can supersede giving them the gift of life, so get as much information as you possibly can.

- And by the way, that's why the website for the Sharing Network is up.

Sharyn, let me ask you this: a whole range of challenges that different organizations face, but for the Sharing Network, what has been the top two or three challenges?

- I'd say the first was, our biggest concern, was keeping our staff safe and healthy throughout the entire pandemic, especially in the beginning, when we didn't really know what we were dealing with.

They never stopped.

They continued to go to hospitals and see potential donors and work with our donor families, never stopped the mission of organ donation, so it was tough.

They were in the hospitals, surrounded by patients on ventilators with COVID.

That was our number one biggest concern was to keep them safe.

- Well, how about this?

In spite of that and a whole range of other challenges, and we've talked to Joe Roth and Elisse Glennon about this, of the Sharing Network, but is it not a fact that 2020, New Jersey set a record for organ donation, Sharyn?

- That is a fact, yeah.

- Why do you think that is?

- You know, in the early times of working with our donor families during COVID, I think there was just such an unsureness about what was gonna happen, and I felt a stronger want to give at that time by families.

I think they were looking for something positive because it was so unknown, so we did have, you know, maintain a very good authorization during that timeframe, but we never stopped.

We did everything that we could.

We made sure every donor opportunity that we had, we were gonna maximize that and help as many people as possible.

You know, we just, we pivoted.

You know, we had to make a lot of changes, but we never stopped the mission, and I think because we stayed strong through the entire process, that's why we wound up having a successful year.

- Bill, let me try this: I'm gonna talk to you about the Transplant Games in just a second, which is an important national initiative, but vaccine hesitancy, huge issue for all of us, for the entire nation, for the entire state of New Jersey, but also, is it different in the transplant community, Bill, vaccine hesitation?

- Yeah, I think so.

Because of the immune situation that most recipients have to go through, I think there's not a solid answer right now today.

I think most transplant physicians are encouraging their patients to get the vaccine, but there's some hesitancy with the concerns that they have with their immune-suppressed systems, so we're pushing 'em hard, and I think most of 'em are getting vaccinated.

- And one of them is smiling right now.

- Yeah.

- You made the decision, didn't you, Denise?

- Yes, I did.

I did.

- Please talk about it.

- It's definitely an uncertainty.

There were no recipients in the trials, and it was an uncertainty, but Steve, there was an uncertainty 14 and a half years ago.

Would I come outta this surgery?

Would I wake up?

Would I live 14 more years?

Life is an uncertainty, and it definitely, to me, it outweighs, you know, what could be, so yes, I am vaccinated, and I would, you know, I can't tell people what to do, but I want you to think about it, really, really think about what we have seen, the deaths that we have seen, and just make a decision.

Education is key.

- (grunts) Listen, we're not in the business of advocating, but we are in the business of informing and educating, and we really do encourage people to find out what they need to find out, but listening to you, Denise, right now, and to Bill as well, get the information, you know, from legitimate sources.

Bill, let me go back to the Transplant Games.

We were so ready, along with so many others, to be out there covering the games, talking about it.

What are the Transplant Games, number one?

Number two, what does it have to do with New Jersey Sharing Network, and number three, what are they gonna look like this summer?

- All right, well, that's a tall task, but the games are celebrating their 31st year right now, and we had awarded the games to the New Jersey and New York area back in 2020, expecting 12 to 15,000 people, you know, would be there to celebrate the gift of life and to encourage others to join the donor registry.

COVID got in the way, and the games got delayed and postponed, and we're now calling it the Reimagined 2020 Games, which is a- - Wait, the Reimagined 20- - Reimagined.

- 2020, we're still going with that?

- Yeah, yeah, it's the name of, the 2020 games are still on.

We're doing 'em in July of 2021, the 16th through the 19th.

We're hosting 'em at American Dream, and the games are different.

The games are gonna be a celebration around the country because most people are not traveling in for the games, so we broke it down.

We broke it down from six days to four.

We're doing 12 competitions instead of 20.

Seven of those competitions are in-market, so in people's hometowns.

They're competing for gold medals in those competitions, and we're doing the special events out of American Dream.

Some of 'em are pre-produced, but we are, we're taking the message to the audience, and it's around the world.

We think we're getting more people 'cause we're doing a hybrid event than we would've if we were doing 'em physically in New Jersey.

- And by the way, we will be wherever we need to be, remotely and/or in person, to bring that story to folks because it's a compelling, important story.

By the way, Denise and Sharyn, both involved in the Transplant Games, right?

- That's correct.

- Now, Sharyn, talk to us about your involvement.

- So I attended the prior Transplant Games as Lady Liberty, and my plan is to make a reappearance, Lady Liberty.

- Now, hold on.

Back up.

Back up, back up.

You're not just getting past that there.

Which games, and where were they, first?

- In Utah, Salt Lake City.

- So you went to Salt Lake City, Utah, as?

- Lady Liberty!

- Lady, well, could you- Obviously in post-production, you know we're gonna get a picture and show it, so you might as well just tell us.

- So our local team that participates in the games is Team Liberty and its tri-state area, so New Jersey, New York, Connecticut, and their mascot is Lady Liberty, and they asked if I would attend the games and be there as Lady Liberty to cheer the team on, and I did, and it was awesome, and I plan to make a reappearance for the 2020 games.

- You're gonna do it, aren't you?

- Oh, yeah.

- For Team Liberty.

- Absolutely.

- I love it.

Okay, Denise, hold on, Denise.

Are you going to be Denise Peoples, or are you going to be someone else?

- No, I'm gonna be Denise Peoples.

(Steve laughing) I think I know her pretty well, I think, yeah.

- That, that's enough!

(Steve laughing) - That's it.

Yeah, that's enough, exactly.

- That's a lot!

(laughs) What's it gonna be like for you, Denise?

- I am going to sing the National Anthem, and I am, you can see on my face, I'm, like, losing it, yeah.

Yeah, I was in- - Because?

What's it like for you 14-and-a-half years later, you're gonna sing the National Anthem at the Reimagined Transplant Games?

What's it gonna be like, you think?

- It was something I could not ever imagine when I did it for the New Jersey Sharing Network's 5Ks, and I just think that this is just gonna be something over the top 'cause my donor- (jewelry clattering) It's my donor singing.

- So- Yeah, usually I know what the follow-up is.

I don't know what it is right now.

Hey, Bill, as you listened to Denise and see the reaction, obviously, in her friend and colleague, Sharyn, reason to be hopeful in this incredibly difficult time as you listen to Denise?

- Absolutely, you know, we live in tough times, but when Denise was telling her story earlier, and you were asking the question about the vaccines, the thing that struck me was the thousands of recipients that I deal with on a day-to-day basis.

They are the bravest people I know.

So I'm not surprised that Denise got vaccinated, and I'm not surprised she's encouraging others to be brave as well.

I mean, what these recipients go through is unbelievable, and you know, so I'm honored to be, you know, a part of that organization, then, and the community of people.

- So let's do this: first of all, I can't thank all of you enough for joining us, and we're looking forward to being a part of the games and continuing to help create greater public awareness around organ and tissue donation, and thank you to the Sharing Network.

Thank you to the Transplant Life Foundation, but also, how about this: you remember this, team, that back in January, I moderated a webcast, the "COVID-19 Vaccine and Transplant Community Webcast"?

Remember that we did that?

We had so many people that were a part of it from all over the country, and this is an excerpt.

It's about a nine or 10-minute excerpt from some of the people who joined us, and it adds to the conversation we just had.

So to Bill, Denise, and Sharyn, I cannot thank you enough, and the gift of life, there's nothing more (hand thudding) to say than that, and by the way, we're getting video not only of Lady Liberty, but no disrespect, Lady Liberty, we're really gonna be excited about the National Anthem.

Both, but you know.

- Absolutely.

- That's big.

(Steve laughing) - Can't wait to see her belt it out.

(Steve applauding) - (laughs) I agree.

- Thanks, folks.

- Thank you, Steve.

- We're, after this- - We love you.

- Thank you, Steve.

- What's that, Bill?

- I said we love you.

Thank you.

- Yeah, well, absolutely.

Right after this break, you'll see that clip.

Stay with us.

To watch more Think Tank with Steve Adubato, find us online and follow us on social media.

- This past year has taught us about resiliency.

What we don't know, the need to innovate also the importance of science, trusting science.

So today's discussion intended to inform and enlighten you engage you.

We'’re going to hear from important panelists who come to this very important issue of the COVID vaccine and its impact on the transplant community from very different perspectives.

- Basically when it comes to vaccinating folks with COVID or pre prevent COVID, like everything else in medicine that we do a lot of it boils down to weighing the risks and benefits.

Do the benefits outweigh the risks?

And it's often a difficult decision to arrive at.

And you'll hear a lot from our other panelists about, a lot of the data that we've obtained about the benefits of COVID vaccination, the efficacy of the vaccines.

And I want to spend a little bit of time just talking about the risks of not getting the COVID vaccine or the risk that COVID itself poses to transplant patients.

So these are two important types of risk that I think weigh into our equation for figuring out whether or not vaccination makes sense.

So if we could go to the next slide, being here in New York at Northwell Health, we're in the eye of the storm so to speak, when the pandemic really began in March.

And so we already be started to see the impact of COVID in our transplant population, specifically in our heart transplant program.

We were a relatively new program having only started in February of 2018.

And we started to see a few of our patients come down with COVID, and noted that as we shared here in this publication that COVID seemed to have a more severe impact at least on our heart transplant patients, than we did observe in non-transplant patients.

So again, it's only a two month period over 10,000 patients.

And as far as Northwell Health that comprises probably one of the largest experience of COVID patient care in the United States, Especially at that time.

So of these 10,000 patients that were hospitalized with COVID 19, of those about nearly, 100 of them were solid organ transplant recipients.

And what we did to try to really tease out what impact being a transplant patient has, as it relates to COVID.

We did some very sophisticated statistical analysis where we actually found matched patients in that cohort.

So by matched, I mean, we tried to find a group of patients that aside from not being transplant patients, they were very, very similar to those 82 patients by way of age, other illnesses and things like that.

And so that got us to about 1600 patients.

And what we did is compare the outcomes of those two groups.

If we can go click one more time.

And what really was the startling conclusion the take home message was that, being a transplant patient uniquely put people at risk meaning they were more than 30% more likely to die or require being placed on a ventilator because of COVID illness than non-transplant patients.

So for us in the medical community, a very striking finding.

And the conclusion there is that while, there is, we don't really know as much as we love to know about the risk of the vaccine on transplant patients.

We do know that being a transplant patient poses a significant risk to getting a more severe form of the COVID 19 illness.

And because of that fact, we believe that the benefit greatly outweighs that what potential risk there might be with the vaccine.

And as a medical community as a surgeon and those transplants, I advocate very, very strongly for patients getting the vaccination.

If you've had a transplant, or if you're going to get a transplant in the near future - These are the additional effects that we have felt as a transplant community.

I mean, there's everything that's been going on globally but specifically for us.

Some of the big ones have been loss of independence because we're spending time back inside.

A lot of us have had to quarantine before.

People have lost insurance, which is obviously a huge part of being a transplant patient.

Mental health, I personally have dealt with more depression during this time, partly because I feel like, I'm wasting the extra time.

Missed work, might've lost your job.

Missed experiences, canceling travel unable to see your family.

That's partly why you got a transplant, right?

And then just being left behind.

I've noticed there's a lot more societal ableism, right now there's this discussion in California about the new vaccine rollout, and how it doesn't include high-risk patients?

So we're seeing a lot of that and having to combat it in addition to staying safe.

So our common concerns, these are things that I've brought together from different patients and from the internet the first one, the vaccine is brand new.

So that's not totally true.

We do know that MRNA has been for quite a long time.

And, there was so much effort put into this one.

It's different than the typical FDA review process.

The second one is it will give me COVID.

Fortunately, this is not a live vaccine.

I know we're not allowed to take live vaccines.

And so if people are testing positive after they're getting the injection that's because they were exposed beforehand.

Three, it wasn't studied in transplant patients.

Well, that's true.

We weren't included in those clinical trials.

However, as Dr. Lima mentioned, there have been studies outside of this essentially show that, similar vaccines don't have any additional risk for transplant patients.

Obviously we don't know, we haven't tested this over time but the fact that transplant patients weren't specifically studied does not preclude us from being eligible.

Number four, it won't last.

There is discussion, is it only six months?

Is it only eight months?

Why risk it if it's only a few months?

My personal answer to that is I would rather still be alive then, and get another shot in six months.

That's how I feel Five, this is the biggest one I've seen across the board is concerned that it could cause rejection could it stimulate the T-cells and, I'm gonna leave that question, up to the medical professionals in the room, but essentially, the opinion is that it shouldn't cause any additional risks.

Obviously they can't say it's not gonna do anything.

Personally, again, none of us like to experience rejection, I totally get that, but also, given the great risk of COVID the great risk of debilitating illness.

You have to weigh it personally.

And then six not all teams say yes, I think Dr. Lima just addressed this but previously we'd been seeing, some centers were saying, "Get it, as soon as it's available."

Others said, "It's too soon."

There's a difference between some places saying, "Oh, take it immediately after transplant or wait a year."

So there is difference in opinion here but as Dr Lima mentioned, across the board it is definitely recommended.

So what I recommend is obviously talk to your transplant team.

Talk to your transplant infectious disease team, if you have one.

I'm really jealous of the people who do, but fortunately I like my infectious disease doctor.

Talk to your primary care provider.

Sometimes we forget that we have one because our team is the one that handles everything, but it's good to check in with them too.

And then of course, go to COVID-19transplantresource.org the people who are hosting this and then myast.org also has the most recent guidance from the medical community.

And then talk to other transplant patients.

There's a lot of misinformation going on online.

I'm not saying you should get into any arguments but I'm hoping that, teachings like these will help people understand that this is a good idea.

- It is through the support of the sharing network in New Jersey, that we and our public broadcasting production company are able to do public education and awareness programming around organ and tissue donation.

And now more than ever before, programming around COVID-19, the vaccines and its impact on the transplant community.

So I look forward to those ongoing programs.

It has been my honor to be a part of this most important webinar.

To everyone behind the scenes, to Sue and Mary and John and Scarlet and everyone else who has been a part of this, thank you for making it happen.

It has been my honor to moderate this and learn from it along with you.

Most importantly, stay safe, be well and let's stick together.

I'm Steve Adubato.

- [Narrator] Think Tank with Steve Adubato has been a production of the Caucus Educational Corporation.

Funding has been provided by MD Advantage Insurance Company.

Horizon Blue Cross Blue Shield of New Jersey.

The New Jersey Economic Development Authority.

Choose New Jersey.

The Robert Wood Johnson Foundation.

Fedway Associates, Inc. Wells Fargo.

The Russell Berrie Foundation.

And by Seton Hall University.

Promotional support provided by Meadowlands Chamber.

And by NJ.Com.

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