How One Leukemia Fight Changed Medicine

Save a Life in 5 Minutes: Jay Feinberg’s Fight Against Leukemia Sparks a Movement.   Discover the life-saving power of a simple cheek swab and join the mission to change lives!

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HOST: JENNIFER  (00:01):

Welcome to episode #33 of the Going for Greatness Show. My guest today is the very definition of paying it forward. His name is Jay Feinberg. Jay is the founder of the Gift of Life Bone Marrow Registry, one of the largest in the world. His organization fights many cancers and blood-related diseases through matching donors with recipients, people who are possibly going to die unless they find that very, very vital perfect match gift of life is now moving into research and development into next generation of cell and gene therapy. His worldwide organization has changed so many lives. Jay has been called out with accolades from presidents of the United States to private donors to universities. It is my great pleasure to share a few highlights of some of the successes that Jay Feinberg has had through the Gift of Life Bo Barrow Registry. And here is what the doctor told a twenty-something Jay Feinberg. 

GUEST: JAY (01:20):

Go home, prepare my bucket list, and then do all the things that I wanted to do in life while I had the chance.

HOST: JENNIFER   (01:26):

Once again, the Holocaust plays a crucial role in survival.

GUEST: JAY (01:31):

Unfortunately, due to the impact of the Holocaust on severing bloodlines, it would be like looking for a needle in a haystack.  

HOST: JENNIFER  (01:41):

Here is the last highlight, and it's really important. Donating stem cells could not be simpler than relaxing in a chair. Take a listen. And boy, so many of us, me included, are completely misinformed.

GUEST: JAY (01:58):

The donor is watching Netflix. They're eating freshly baked chocolate chip cookies.

HOST: JENNIFER  (02:03):

And now without further delay, here is my conversation with the amazing Jay Feinberg. He is the founder Gift of Life. He's a 27-year leukemia survivor, and this man has the most incredible, perhaps, greatest story of them all.

GUEST: JAY (02:25):

So it was the early 1990s. I was about a year outta college -  like pretty much any college student, you know, fresh outta school.   And ready to take on the world and feel like nothing can stop them. I was, working in lower Manhattan, in New York, in the financial services field. I had just been accepted to law school. And unfortunately, all that came to a screeching halt when I was diagnosed with leukemia and told that my only hope of a cure was a bone marrow transplant.

HOST: JENNIFER  (03:09):

So you were out of college, ready to hit law school, and you got sick and you got this horrible diagnosis.

GUEST: JAY (03:17):

I was assured despite the diagnosis, that at least there was a treatment that could help cure me of my disease. And that was a bone marrow or a stem cell transplant, a 30% chance you'll find a suitable donor or a matching donor in your family. So we immediately tested my siblings and my immediate family members. Unfortunately, none of them was a match for me. I remember the first appointment that we had at a large cancer center in New York.  The doctor crowded my parents and my two brothers and me, and a little small exam room, and shared with us that none of them was a match. None of the family members were a match. Unfortunately, in running a search of the registry as it existed at the time (it was very small compared to the way it is today), no unrelated donor was a match either.

GUEST: JAY (04:16):

The doctor said he didn't think I would find a match and I should go home, prepare my bucket list, and then do all the things that I wanted to do in life while I had the chance.   The chemotherapy would keep the disease under control for some time. But ultimately, it wasn't a cure. And I would succumb to leukemia.  I asked him why he didn't think I would find a match, he shared something that was a shock to me. Because of my ethnic background, Eastern European Ashkenazi Jewish. When I asked him why, that's when he explained to him that he explained tissue type is inherited – like eye or hair color. So your best chance of finding a genetic match is with someone who shares similar ethnicity. For me, that was someone who was Eastern European Jewish. But unfortunately, due to the impact of the Holocaust on severing bloodlines, it would be like looking for a needle in a haystack.

HOST: JENNIFER   (05:19):

Wow.

GUEST: JAY (05:20):

And as you had mentioned, I had a family who was very much involved in my search. The doctor in the room knew a lot about stem cell transplants and leukemia, but what he didn't know much about was what I lovingly refer to as the Jewish mother effect.  And, she was not willing to take no for an answer. That evening we went home to my parents' home and around their dining room table, decided to start Gift of Life, which at the time was called Friends of Jay. We figured that if I couldn't find a match in the registry as it existed at that time, we were gonna run donor drives and increase the size of the registry with the hope of finding a match. Not only for me but also for all of the other patients out there who were in similar circumstances. That’s really how it all began. It was very, very grassroots. No social media, no internet, or anything like that. Just old-fashioned big posters and flyers in the community and storefronts and things like that. Local human interest stories and things. Very, very grassroots. But it just exploded, and it became huge.

HOST: JENNIFER  (06:42):

How long did it take for your donor, Becky to arrive on your doorstep, so to speak?

GUEST: JAY (06:48):

So it was about four years into my diagnosis and the chemotherapy, the doctor was right, the chemotherapy stopped working, and my disease started to accelerate. I still had not found a perfect match yet. We decided to go with a donor who was a multiple mismatch, which wasn't ideal, far from ideal, but the best possible chance.  Then a college student from Toronto named Benji reached out to us, and we told him, we'd made a decision to go with a mismatch. But you can go ahead and do a drive if you want to. Maybe it'll help someone else out there. When we asked him how he heard about me and how he got involved, a friend of his in Toronto, who needed a transplant.

GUEST: JAY (07:42):

And his donor came from a drive that was run for me. So he wanted to pay it forward. He wanted to help in return for the match that was found for his good friend. So he went ahead and he did the drive. He was from Chicago. The Drive in Milwaukee, Wisconsin. He brought some volunteers with him on the morning of the drive. One of them was a young lady who was filling in for her sister who was supposed to go. And they tested 130 people. And this young lady, her name is Becky, decided at the very end of the drive, she was handing out flyers and helping out. She decided to get tested with a cheek swab, and she was the very last person tested at the very last drive that we ran, and she turned out to be my miracle match. We subsequently had a transplant.

HOST: JENNIFER  (08:33):

I have to unpack all of that. That is unbelievable. I know you've got a documentary coming out in 2024 called “One in a Million”, which is the story of your life and Becky saving you.  In plain English does it mean to test to see if you're a match? I read about cheek swabs.  How does that work? Is it a scary process for someone who might wanna be a donor?  

GUEST: JAY (08:59):

So first of all, to test to join the registry is just a cheek swab. It used to be a blood sample, but for the past 20 years, we've been doing it through molecular typing, which involves just a swab of your cheek. The donation process has changed significantly too. And a lot of people don't realize how easy it is to donate stem cells.  There are a lot of misunderstandings about what's involved in donating your stem cells to a patient who needs a transplant. Some people get their information these days from social media or  TV shows or movies. And some of them, portray transplants as very scary procedures where they have to break your bones to take out the marrow or stick a big needle in your spine or something horrific like that. And it couldn't be any further from the truth.

HOST: JENNIFER (09:57):

Tell me, what is the reality of gathering stem cells now?

GUEST: JAY (09:59):

We take the stem cells from their blood. It's very much like donating platelets in a blood center. if you can picture it, you're in a big leather recliner chair.  You have a machine next to you that's a centrifuge, basically spinning blood very quickly. You've got a needle in each arm, the blood is taken out of one arm and run through the centrifuge. We take the white blood cells or the stem cells from the blood that's processed, and the rest goes back into the other arm. But while this is all happening, the donor is watching Netflix, they're eating freshly baked chocolate chip cookies. They can play video games. They can have their computer in front of them. They are out in a couple of hours. They’re sitting in the recliner chair, just being entertained until the procedure is over and they go home and go about their normal lives. They go back to school, they go back to work. That’s how easy the process is to save a life. It's very different than what Hollywood portrays it to be. 

HOST: JENNIFER   (11:05):

I cannot believe how simple it is. I mean, it's essentially giving blood. That’s what it is. Is there any issue with respect to privacy since you're gathering people's DNA?

GUEST: JAY (11:19):

Like any other tissue bank or organ procurement organization, we follow very strict privacy and confidentiality practices. First and foremost, donors are, are identified by a unique identification number, not by name. Second, donor information is secured through encrypted databases that are locked down. Only staff who have a need to know are involved in our donor center, the case managers who are working with the donor, and nobody else. The only way that a donor and recipient can actually even get to know each other would be a year after the transplant, if both the donor and the recipient sign a consent form to mutually agree to exchange their identifications with each other, their personal identifiers with each other. In other words, if the donor and recipients sign each signed consent form, they get to meet. But other than that a person's information is very, very secure, very lockdown need to know only encrypted.  We follow all of the regulatory requirements both in the United States and in Canada.

HOST: JENNIFER   (12:29):

For example, it would start with a cheek swab, and then if a match is found, then you go on to the second and final part, which is the gathering of the stem cells.

GUEST: JAY (12:41):

Exactly.

HOST: JENNIFER (12:42):

So how do you go about finding donors?  I read something about going to college campuses.

GUEST: JAY (12:52):

Transplant physicians tend to prefer requesting younger donors because the younger you are, the more stem cells your bone marrow produces. We recruit very heavily naturally on college campuses where students are 18 to 21 years old. The ideal candidates join the registry. Students are also ideal because they’re very social and focused on advocacy.  What we're doing is trying to democratize healthcare cell therapy by providing an equal opportunity for a match to every patient in need. We have about 350 college students on about 120 campuses throughout North America, who recruit donors for us. It comes to about 50,000 donors a year. We have other recruitment initiatives. For the past almost two decades, we've been swabbing the students who go to Israel on Birthright Israel, thanks to Charles Bronfman who opened the door back in 2004. It's a great experience. We're actually coming up within the next couple of days on our 100,000th Birthright donor.

HOST: JENNIFER   (14:11):

Unbelievable. Share with me the statistics about leukemia and, and curing blood cancer. How many people have Gift of Life helped so far?

GUEST: JAY (14:24):

We have transplanted just under 5,000 patients.  Through Gift of Life they found a match and have received their life-saving transplants. It's an incredible thing to be a part of and witness donors coming into offices here every day to donate their stem cells. It’s very special.

HOST: JENNIFER  (14:49):

So if we were sitting here in five years, and you and I were having this conversation again, Jay, what does Gift of Life look like for you? That's a tongue twister.

GUEST: JAY (14:57):

Funny you ask Jennifer.  I’ve thinking a lot about that.  There are ways that we can be proactive to help even more patients out there in need. While we've had a lot of success over the years, still many patients can't find their match. For other patients who can find their match, not all of them, you know, because they have lived very, very acute life-threatening diseases, sometimes they won't make it to the point where their match can donate the stem cells to save their lives. So we've thought a great deal about how we can contribute to the overarching goal of democratizing cell therapy to make it available for every patient in need, regardless of whether they have a match or not. The opportunity that came up recently for us was to ask donors in our registry if they would be willing to donate their cells, the same cells that they donate for transplant if they would be willing to donate those cells for research and development and clinical trials.  This would ultimately result in next-generation cell and gene therapies to be able to treat a lot of these blood cancers, leukemia and lymphoma, and all of these diseases that we treat, as well as solid tumors, including lung cancer and other solid tumors out there that could benefit Gift of Life recipients.

GUEST: JAY (16:22):

Does Gift of Life have its own lab and cell therapy and collection and advancement and research center?

GUEST: JAY (16:32):

Yeah, we are very much fully integrated here. Not only is our registry and our donor center, the people who do the case management, the nurse practitioners, the nurses, and the case managers all located here, but so is our stem cell collection center.   We collect the stem cells and we have a cellular therapy laboratory.  The Gift of Life’s Center for Cell and Gene Therapy is on the first floor of our building where we conduct research but we also have a clinical laboratory for testing.   We also do cell isolation and cell processing. We are starting a biobank within the next six months to provide stem cell products, what we call off the shelf--  for patients in need and for cell and gene therapy developers. We really do a lot of this in-house, but we also work very closely with cell and gene therapy developers, and biopharmaceutical firms who are developing these next-generation therapies to help more patients in need. We work with academic institutions and research institutions - it's a very exciting time.  I really see over the course of the next five to 10 years, tremendous changes in the way that we'll be able to help patients.

HOST: JENNIFER  (18:08):

I know you wanted to be a lawyer 27 years ago, but I kind of feel like this is really your calling. It's truly amazing how many lives you've saved through really the sheer determination of helping others find donors. It's incredible. I know you've gotten many awards from Presidents of the United States, and, the list of accolades Jay Feinberg is very long. Can you share a story with me of someone in particular, that Gift of Life has helped recently?

GUEST: JAY (18:47):

Jennifer, as we speak right now, we have several donors in our stem cell collection center who are donating their stem cells today, and there are couriers downstairs waiting in our lab for those stem cells to be collected so that they can take them on airplanes to their destinations all over the world. So, your lives are saved every single day. Each one is a true miracle because it involves donors who don't know these people's identities, and yet they've done this for complete strangers. That's really what it's all about. It's about saving lives every single day. As you mentioned, what's our goal, in five years and 10 years? It's, it's making more of that happen through new and innovative technologies that are at our disposal, but all require our cells from healthy volunteer donors. And, that's what it's all about. 

HOST: JENNIFER  (19:46):

What I learned from this conversation is just how incredibly easy it is to donate stem cells. Really, it's a cheek swab to identify, and then a couple of hours watching Netflix. My last question is, if someone wants to help beyond being a donor, what should they do for Gift of Life?

GUEST: JAY (20:08):

There, there are many ways that people can get involved. They can take action immediately and go to our website, www.giftoflife.org, and order a cheek swab kit so that they can join the registry. We'll send it to their home. They do their cheek swab themselves and they send it back. And, we put them in the registry after we test the cheek swab sample. They can donate to a particular patient who needs a transplant. They get called as a match. They can donate for research and development in clinical trials that will result in next-generation therapies to help countless patients out there in the future. If they're not eligible to join the registry or donate cells for either of these options, they can make a contribution to help grow the registry and continue to test the process. The testing of the cheek swabs at the lab, each test cost us about $60 and they can help save lives that way. There are many ways that people can get involved with the organization.

HOST: JENNIFER  (21:09):

Jay Feinberg, thank you so much for spending your morning with me. Gift of Life is, is just amazing. This podcast is about people who have resilience, grit, and determination, and they move through a really difficult challenge in their life. And I've spoken to many different people who've had so many obstacles before them, and they find their way forward. And you're using your Leukemia to pay it forward for the future of humanity with Gift of Life.  Jay, you are truly, truly inspiring. And thank you so much and I hope we can talk again.

GUEST: JAY (21:50):

Thank you so much. I really appreciate your time and for sharing this story. Jennifer, it was a pleasure to be here with you. 

HOST: JENNIFER  (21:57):

You for listening to episode #33 of the Going for Greatness Show. If you found value in this episode, let's help Jay's organization by sharing this podcast with a friend.