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Bill Klaproth (Host): April is Donate Life Month and New York state has one of the lowest donor registry rates in the United States and ECMC and Unyts are teaming up to build awareness throughout the community about the need for donation and transplantation, and here to talk with us more about National Donate Life Month is Nicole Knox, a registered nurse and director of transplantation for Erie County Medical Center, and Sarah Diina, director of marketing and community development at Unyts. Nicole and Sarah, thank you so much for your time. So Nicole, let’s start with you, why is organ donation so important?

Nicole Knox (Guest): Organ donation is so important because it really is a way that, at the end of your life, you’re able to help other people in your community or in the United States, live on in different ways by helping to give them that life saving transplant that they need, and at ECMC we see hundreds of patients a year that are in need of a kidney, and through donation, someone who is at the end of their life, is able to help those patients really get off of dialysis, relieve them from being tied up to that chair three days a week if not more, and begin to have a better quality of life than they have right now.

Host: Yeah, very, very important. So Sarah, New York state has one of the lowest donor registry rates in the United States. Why do you think that is?

Sarah Diina (Guest): Yeah, so New York state actually has the third highest need for donors across the country. You have the second lowest percentage of registered donors, so that means people who have registered their consent to become a donor at the time of death. There are almost 10,000 people waiting in New York state right now, so it’s important that we get as many people to sign up as possible. I think there are a few reasons why we are lagging behind. Some of that has to do with how our registry functions. Some of that has to do with the age that you can be to register, and again just getting the word out there. So within the last two years, an organization called donate life New York state actually took over the registry from the New York State Department of Health and they have been working tirelessly with organ procurement organizations like Unyts across the state to try to improve all those things I just mentioned. So they’re working to make the registry more friendly, user friendly, for people to get on and register, make it an easier process, not so time consuming. They’re working with organ procurement organizations to raise awareness across the state, and they have actually worked with the state as well on legislation to make it possible for 16-year-olds to register their intent to donate. Prior to this, you had to be 18 to enroll in the registry and with the addition of this new legislation, 16-year-olds can now register their intent, which is really helping to move things in the right direction to hopefully keep us up to speed with the rest of the country.

Host: Well making it easier and building awareness is always an important – and you just mentioned 10,000 people around the organ donation waiting list, that’s amazing. So Nicole, as a nurse, tell us first hand how frustrating this must be.

Nicole: I’ve been able to see it on both sides because prior to working in transplant, I’ve worked in the ICU, in trauma ICU. So I was able to see the difference that donation made to families as their loved one was approaching their end of life and the closure that it helps give them knowing that their loved one is able to live on in other people and it really helps them with their grief, and on the transplant side of it, I get to see how appreciative our patients are when they get that call that they have an organ waiting for them, and I get to see them go through their hospitalization and recover and the quality of life that they get back as they’re recovering from transplant and go forward. I think that we work wonderfully with Unyts in trying to increase donation registration throughout our community, but really getting proper education out to our community members and really decreasing any stigmas that might be out there about organ donation so that people are properly educated and they know that they can communicate their wishes in multiple forums through the donor registry and also by telling their family their wishes. It is a beautiful gift that someone’s able to give to another person or multiple people in some cases when they are organ donors, and really just seeing our patients on the other side of it and when they get that organ and how appreciative they are and how they’re able to do things that they haven’t been able to do in so long, it just – it makes the whole process so worth it.

Host: Absolutely and it’s interesting how you put that, it’s a beautiful gift, and you also mentioned working with Unyts. Sarah, how did the relationship between Unyts and ECMC come about? Tell us about that collaboration and partnership.

Sarah: Unyts and ECMC have been working together for years. We are the local organ procurement organization, and ECMC is the regional transplant center so it’s kind of a natural relationship, but outside of the clinical world, we work so closely together to raise awareness within the community. So we do a lot of health fairs together, education internally with staff, education with the families. We do things in the media, sharing stories from donor families, sharing stories from recipients, so that people really can understand the need for donation, the need for transplantation, and can put a face to the need, which is so important. So we work together year round, but especially during April, which is National Donate Life month, we put a lot of energy, some extra energy into getting the message out there and getting in the media, in the community, doing information tables within the hospital environment, just to ensure that everyone fully understands the importance of this mission, the importance of having that conversation with your family, the importance of registering in the hopes that we’re going to save all those lives of people waiting.

Host: And Nicole, what kind of steps are you taking internally at ECMC to raise awareness?

Nicole: I think raising awareness is something that we do all the time at ECMC and we really try to educate our staff, our nurses about the importance of donation, about when it’s appropriate to call Unyts for an organ referral. One of the things that we do well is every year we do an opening ceremony of sorts in the beginning of the month to kick off donate life month in which Unyts and ECMC come together and we share stories of donors and recipients and the impact that it’s made on lives in our own community, and we invite families that have been affected by donation, we invite staff from the hospital to come and partake in that ceremony so that they can see the difference that they’re making by increasing that awareness and increasing that education about donation in the Western New York setting.

Host: So Sarah, when it comes to enrollment and the goals for this, what are you hoping for in terms of enrollment?

Sarah: We are really just hoping to, again, get the word out there about the importance of donation and transplantation. We don’t have an actual numbered goal attached to this. Again, it’s about awareness and making sure people understand the need. So even if we can get a handful of people to register, that’s better than anything we can ask for. We want people to have a conversation with their families because we don’t want anyone to be put in the position where they don’t know what their loved one would have wanted if they’re in that position in the hospital. It’s important to share your wishes, to have that conversation, and again important to register when the time comes.

Host: And Nicole if you could wrap this up for us then, speaking of becoming an organ donor, how could someone do that?

Nicole: There are multiple areas to become an organ donor. I think some of the more popular ones noted is through the DMV, you can make your intent to make your intent to donate known, as well as the Unyts website, which I believe is unyts.org/checkyes and you can go on the website and register to donate there. I think most people have a phone that’s able to access the internet, so that’s probably one that you could do right as you’re sitting listening to the podcast and that’s a way that you can make known that you would like to be a donor, and then I think also making sure that your family knows your wishes and that you would like to be a donor if that time arises. It’s sometimes a difficult conversation for us to have with our families, making our end of life wishes known, but it’s really important to share that with the loved ones around you so that if that time arises they know how to make the best decisions for you.

Host: Nicole and Sarah thank you for the important work that you’re doing and thank you for your time. For more information, please visit ecmc.edu, that’s ecmc.edu. This is the True Care Healthcast from Erie County Medical Center. I’m Bill Klaproth, thanks for listening.