The Gift of Life Donor Program is a leading organ procurement organization in the United States that caters to the greater Philadelphia area, as well as Delaware and parts of New Jersey. The Gift of Life Donor Program has been helping bridge the gap between donor and recipient while advancing the noble mission to educate the public about the extraordinary impact that organ donation can have. In just 2020, there have been 1,619 life-saving organ transplants in the region.
I have been connected with the Gift of Life Donor Program as an ambassador for a few years, and in middle school I started a social media page for the project called “Live and Give”. Here is the link: https://www.facebook.com/LiveAndGiveOrganDonation
In this interview, I spoke with Mrs. Colleen Duran, a volunteer coordinator at the Gift of Life Donor Program, who has helped the organization foster connections with the community. Please enjoy!
- Discussion of the deep need for organ donors, why the numbers can be deceiving
- COVID-19’s impact on clinical organ donation
- Dissipating organ donation myths – why outreach is important
- COVID-19’s impact on the Gift of Life Donor Program’s outreach and awareness initiatives.
For an introduction to my readers, how does the organ donation process work? How does the Gift of Life Donor Program and UNOS help facilitate this process?
There are two sides to the process, but on one side is a patient who is in need of a life-saving organ or tissue donation. These people get added to the waiting list. We use an entire system of computer-generated metrics that ensures a completely objective approach to the waiting list. This way, nobody can get bumped up because they are a celebrity or because of their socioeconomic status or anything of that sort. Everything is based on the data. Who is the sickest? Who has the greatest chance of success from a donation? Who lives the closest to a potential donor? These questions begin on the patient/waiting list side.
On the donor side, there are people who are usually in accidents or some sort of injury that causes them to be in a situation that despite all efforts, they are unable to be saved. If the person has already registered to be an organ donor, a transplant coordinator or a team of transplant professionals will talk with the family and communicate their loved one’s wishes. If this person is not a pre-registered organ donor, we will still have that conversation with the family, so they understand that this is an option.
This is where the Gift of Life comes in. We help coordinate these life-saving gifts, between the donor and recipient. This happens all across the United States. We are one of 57 OPOs (Organ Procurement Organizations), and we are all designated federally to different locations in the United States. The Gift Of Life Donor Program serves the state of Delaware, southern New Jersey, and eastern Pennsylvania. For any death or transplant that occurs in this region, we are the people who are called first.
Why is the need for more donors so urgent? What risks do people on the waitlists face with the small percentage of people in the United States registered to be organ donors?
There are 160 million people who are already registered as organ donors, which is a lot of people! If we already have that many people registered as donors, why do we need more people to register? Well, the fact is that less than 3 percent of people who pass away die in such a way that they can be organ donors. This is because blood and oxygen have to continue to sustain organ viability, and most people don’t die in a way that’s possible. So there is a small percentage of actual organ donors, so the more people that register, the higher chances there are for people to receive these life-saving organs. That’s the biggest sense of urgency. Along with that, there are always more than 100,000 people waiting for a life-saving organ in the United States. Many of them are waiting for a kidney. Kidney diseases are the number 1 reason that an organ transplant has to happen for people. In our region, we have at least 5,000 people waiting for an organ. There is a great need for more donors, and lives are lost on the waiting list every day.
Data tells a story, and every number that we mention is a person, is somebody’s mother, somebody’s son. More than 5,000 people, 5,000 families that are impacted every day while their loved one is waiting for the gift of life. 5,000 families that don’t know if their loved one is going to make it to the next day.
COVID-19 shut many of the world’s most vital processes and systems down extremely quickly. One week everyone was going about their daily lives, and then the next week people were in lockdown. How did the initial wave of COVID-19 impact the organ donation process?
The first couple of months into the pandemic, things were very slowed down. No one knew much about anything, because the situation was so new to us. The months of April and May were slow, because we didn’t know if it was safe to procure organs, and the hospitals were so overrun. After that, however, we saw an increase. I think it’s important to say that anyone who has been diagnosed with COVID-19 has not been an organ donor. The reason why is that we don’t know the long-term effects of it. There will be a lot of research involved with that. There are a few situations where illnesses can prohibit organ donation. For example, if someone has active cancer, they will not be able to donate their organs, as we would not want to transmit cancer to anyone else, or risk that situation ever arising. However, there are situations where research has been done that has opened the doors for different donation situations. For example, someone who has HIV/AIDS can donate to someone else who also has HIV/AIDS. 20 years ago, that couldn’t happen because there was too much unknown about the disease.
Is it possible to donate specific parts of tissue if you have an illness?
What is worth noting is that some people with chronic diseases in specific organs may be able to donate organs that are not effected by that disease. For example, someone may have a heart condition. That person will not be able to donate a heart, but they may be able to donate a liver, lungs, and tissues like bone marrow. Many people say, “I can’t be a donor because I have XYZ,” but the reality is you may still save someone’s life through a different organ. I think that is one thing people will be surprised to learn.
Even something like tissue donation can be life-saving or extremely life-enhancing. For example, burn victims who receive skin might die without that. People who receive new tendons wouldn’t be able to work without that donation. How are they going to stay afloat financially? When you look at the ripple effect of these donations, it is incredible.
What are some problems with organ donation misconceptions, and how can we help abate that problem?
I think that’s very important, especially for younger people who are watching a lot of YouTube and other entertainment sources. The point of entertainment is to catch your attention and keep you engaged. Sometimes, they don’t portray organ donation in a factual light because it’s not as interesting of a process. Unfortunately, many people believe what they see on screen. No one really goes through the process of fact-checking. So that’s another reason why outreach is so important. We need to really get out there and make sure that those misconceptions are busted and put the facts on top instead.
Now steering towards Gift Of Life’s endeavors with advocacy and awareness. Along with the actual donation process, what is the Gift of Life Donor Program’s role in raising awareness to the public and the greater Philadelphia area?
There are a lot of aspects to that. I specifically work on community outreach in terms of community events with running health fairs, going into communities and colleges, and working with high schools. We also work with senior citizens about their end-of-life decisions. A lot of people don’t know that there is no age limit on who can donate organs. You can’t be too young, and you cannot be too old. The oldest person who has ever become an organ donor just occurred in May, a 94-year-old man donated his liver. It’s incredible!
These are just some examples of the things we try and accomplish. When we are talking to high school students, usually people are asked for the first time they go to the DMV, “do you want to register as an organ donor?” Most times, if people have only heard information off of Grey’s Anatomy or YouTube, they’re going to say no. So our goal is to make sure that students are armed with facts, so they can make an informed decision when asked that question. When I go into a high school program, I tell them, “I am not here to convince you to be organ donors. That’s not my job. My job is to give you the information that you need, so you can make a proper decision.” As a result, lots of conversations happen and students end up wanting to get involved with our mission by learning a lot about it. They learn how many lives are touched through both the Gift of Life Donor Program and the Gift of Life Family House, where we support transplant patients needing housing.
Building relationships with contacts at different schools is the best way for us to further our mission with other students and people. We want to maintain our relationship and become community partners. Say I talk to one class, and there are only 20 kids in it. Many people will say, “Oh, it’s just 20 kids, it’s not worth the time.” But who knows the ripple effect that one talk, person, or idea can make? They may go home and tell parents, their friends, other people. I never think of a small gathering as not worth my time, because there really is a ripple effect in everything we do and in any kind of community outreach opportunity.
How has the pandemic impacted Gift of Life’s goal to educate the public about organ donation?
What has been interesting for me throughout the pandemic was that the pandemic also allowed for a greater level of accessibility. We had interactions with more than 160 high schools and reached over 8,000 students in 2020. We really did have to pivot and make the programs that we had been doing in person, virtual. Furthermore, we had to provide a couple of different ways to make them available. We had synchronous and asynchronous opportunities and offered community service as an incentive to complete the asynchronous activities. We had them download a PowerPoint, go through it, watch videos to learn as much as possible. Then we had them submit a feedback survey, which was quite intensive. Once students submitted this survey, they could earn up to 10 hours of community service. I didn’t know what the result of this would be. I just asked myself, “How can I make this accessible for students right now, while making it mutually beneficial?” By adding this element of earning some community service, it made it more appealing for many students, which is why we got so much interest in it. It’s been fascinating, very challenging, and we are definitely looking forward to returning in person. However, we are always going to keep some aspect of virtual accessibility for students since it was so successful.
How has social media played into awareness?
Gift of Life has a communications team, and 2 people manage our social media. We are on most of the major platforms. Anytime we do any programs from seniors in high school to senior citizens, we try to be aware of what platforms these age groups are using. For example, for high schools, we would do something on Instagram. We actually talk to students about the metrics behind social media. We post something on Instagram before the session, and then we can see how the response was. It also shows students how significant of an impact they can have by linking, posting, or sharing something. When we teach students the reasons behind what we do, we can start a sort of “virtual volunteering.”
We also use social media to put faces to the names they hear. Many people think transplants don’t work and think that recipients will die in a year or two of receiving the organ. We feature stories of real people and the story of their gift of life, and that allows the reality of organ donation to be shown to the world.
For all of my interviews, I like to end with a message to the public. What would you say to my readers and the public during this tough time?
Regarding Gift of Life and organ/tissue donation, I would like to say that it really works, it saves lives, it helps families, and you never know the impact that you might make if you register as an organ donor, or if you support organ donation in your sphere of influence. Personally, being civically engaged in what we do is good for the whole world. One person can make a difference. One person with another person leads to whole groups of people making an impact. Never doubt the impact that one person can have, and you can be that person.
Please visit organdonor.gov and donors1.org for more information. Signing up to be an organ donor can have a tremendous impact on people’s lives.