Cancer patient uses his addiction battle to create a potentially life-saving device

Ever feel like you've hit a certain age, and your chance to impact the world has passed you by?

In today's Grieving Out Loud episode, we'll introduce you to Neil Jackson, who proves that age is just a number. In his early 60s, Neil faced the devastating news of a rare cancer diagnosis and the slim odds of survival after a risky surgery. But his story doesn't end there. Neil found himself confronting a new battle – addiction to the very painkillers meant to ease his suffering.

Now, Neil is turning his pain into purpose, not just by sharing his story but by inventing a device aimed at helping others battling substance use disorder. Please tune in to discover how Neil's innovation has the potential to change lives and reshape our nation's devastating drug crisis.

Transcript

[00:00:00] Angela Kennecke: You may hit a certain age and think you're too old to make a difference. Your chance to make a real impact has passed, and your skills just aren't cutting it anymore. Well, our interview today on Grieving Out Loud is here to flip that script. It's a reminder that age is just a number, and the power to make a difference is in you.

It doesn't punch a time clock. 

[00:00:27] Neil Jackson: God teaches me different things every minute. This is one of the most important minutes. 

[00:00:33] Angela Kennecke: In his early sixties, Neil Jackson received the kind of news no one wants to hear. Doctors diagnosed him with a rare form of cancer coupled with the daunting odds of a one in a million chance of surviving a risky, life saving surgery.

But that is not where his story ends. In the aftermath, Neal found himself grappling with another challenge, an addiction to the painkillers prescribed by his doctors. 

[00:01:01] Neil Jackson: There was one day there that I had a whisper in my heart. It's an emotional whisper. That whisper said, Neal, you need to end the use of your drugs.

Because I had been in such a depressed state that life had no meaning. 

[00:01:16] Angela Kennecke: Now, Neal is using his painful experiences to help others battling substance use disorder. Not only by telling his story, but also through a unique invention. I'm Angela Kennecke and this is Grieving Out Loud.

Well, Neil, welcome to Grieving Out Loud. I am so glad that you could join us. 

[00:01:42] Neil Jackson: It's really my honor. I feel blessed to be on with you today. So I've listened to your podcast before and quite a learning experience. So I'm humbled to be here. So I'm dedicated to. message to get the word out. I mean, it's just so many of us out here that are that are hurting.

[00:02:02] Angela Kennecke: Yeah, that's all we can do is to try to, you know, partner with each other, join hands, and to try to help other people. And the more we talk about it, and the more we learn about it, and the more we try to problem solve together. I think the more likely we will come up with better solutions to this horrible epidemic we find ourselves in.

It's an epidemic that Neal never thought would touch his life. For seven decades he never struggled with substance use disorder or even experimented with drugs. But then in 2011 something changed. Neal began suffering from troubling health systems and his life took an unexpected turn. At that point 

[00:02:41] Neil Jackson: I was 172 pounds.

I was 60 years old. I was having a uncomfortable feeling as I flew around the globe working for, uh, E Trade Financial. I was in charge of their global audit division, but it was just being uncomfortable. I couldn't figure out what was going on. The final diagnosis was a rare cancer called chondrosarcoma, which is a cancer of the soft tissue.

It had grown in huge proportions at the base of my spine at eight and a half pounds was the tumor that they took out. Wow. Yeah. Yeah. And I was hospitalized for 11 months at Mass General. I went from 172 to 102. I had probably the best chondrosarcoma surgeon in the world and a team of seven from all the chiefs.

They were going to work with me. There were seven surgeons, chief surgeons, in the operating room for a total of 23 hours.

[00:03:40] Angela Kennecke: Just surviving that surgery was nothing short of a miracle. Neal says doctors told him he had a one in a million chance. Thankfully, Neal defied the odds. But then came an incredible amount of pain. And 

[00:03:56] Neil Jackson: they said I was a chronic pain patient. So they were putting me on, started with morphine, went to Oxycontin, hydromorphine.

And then we went on to fentanyl. Fentanyl was oral at first, and it just destroyed my digestive system. So we went to the patches. I was taking those patches every 72 hours, replacing them. By the first, I guess, two years into it, I was at 48 hours replacing. So my temperament for opioids was growing. My demand for it was exceeding any expectations the doctor could control.

They didn't know if I was telling them the truth or not, where my pain level was. I really didn't have pain. I just wanted more drugs. 

[00:04:35] Angela Kennecke: Let's talk about that for a minute. When you were in pain, and I'm guessing you were in pain after the surgery, was the pain in your back? 

[00:04:43] Neil Jackson: Yeah, it was, uh, the base of my spine.

They had to remove a full section called the sacrum and my total pelvis. That was replaced with an artificial pelvis and my left hip was replaced. So after all that, you know, I. I had a real trip on pain, there's no doubt about it. 

[00:05:02] Angela Kennecke: And tell me, you know, at the time, and this is more than a decade ago? 

[00:05:06] Neil Jackson: Yeah, 2012.

[00:05:08] Angela Kennecke: 2012. So I think that the prescribing practices back then too, people weren't really thinking about this could be addictive, this could be Did anybody ever talk to you when they were prescribing Oxycontin and then Fentanyl about the addictive properties of these drugs? 

[00:05:26] Neil Jackson: No, it's, uh, the surgeon, he probably just said, give Mr.

Jackson, you know, he's going to have severe pain, right? So then in comes the doctor who manages pain at Mass General or Harvard, and they started me on a regimen. 

[00:05:39] Angela Kennecke: What kind of state were you in during that time and how long were you on the painkillers for? 

[00:05:44] Neil Jackson: I felt I was fine. I'm a painter. I'm an artist.

And at that point I'm painting, I'm trying to get myself back to, to something of normalcy. You know, I spent 11 months at Mass General, I came home. I had to go back for emergency surgery to remove my left leg, so I was back for another three months, and then I, I'm back home again. I was just trying to get myself back to some sense of normalcy, you know?

I was taking the drugs because, you know, they were prescribed. The tragic thing on the drug side of it, on the prescribed side, is once the surgeons and everybody at Mass General prescribed all this, and they watched me on a daily basis, okay, because I was there. But once I came back to Lynchburg, Virginia, my family doctor never got a phone call from anybody at Mass General and saying, how's Mr.

Jackson doing? You know, I never got a phone call from him. You know, do you think it's time that he's starts to wean off of these opioids? You know, can you give him Motrin or give him Tylenol? We never heard. And then on my personal physician side, he never once approached it. I find that to be disappointing.

He knew that I was. Absolutely addicted and there's some doctors would say, Oh, you're dependent. I say, yeah, you tell me the difference. You know, 

[00:07:01] Angela Kennecke: did you know you were addicted? 

[00:07:03] Neil Jackson: Oh, absolutely. 

[00:07:04] Angela Kennecke: How did you know? 

[00:07:05] Neil Jackson: I had an intolerance for, um, even the time between switching patches sometimes would take two to three hours for the.

trans thermal medication to get into my capillaries and get into my system would maybe have one to two hours of hell when you say hell, what do you mean screaming pain for 12? Well, the longest one was 27 hours of screaming into a towel, 

[00:07:29] Angela Kennecke: and the pain was isolated to the areas where you had your surgery.

Or was it all over? 

[00:07:34] Neil Jackson: I guess it would be the track of the nervous system that was damaged, and, uh, it's incredible, okay? Now, the surprising thing was, after I decided I got this message, you know, that I needed to end this stuff, I was very fearful of the residual pain. I was very fearful. So as I tapered myself off and began this process, I was very surprised that I had no pain.

I had basically healed, unknowingly. It's a crazy thing because just months before, I started to taper off. Talking to pharmacists in my area about going to other doctors to get the prescriptions filled because I had thought my doctor would eventually just stopped filling the prescription. And then I was also looking at street fentanyl and cocaine and heroin.

[00:08:22] Angela Kennecke: You were? 

[00:08:23] Neil Jackson: Oh yeah. 

[00:08:24] Angela Kennecke: I mean, what made you do that? Do you think it was just your state of mind in addiction? Because here you are, you know, in your 60s, somebody least likely to go to the streets, right? An educated person, I mean, all these things. And that's, I think it's hard for people to understand. I think what's hard for people to understand is how someone goes from the prescription pills to the streets.

And I know people get cut off and they feel desperate, right? 

[00:08:49] Neil Jackson: That's right. It's a rainy day that you're planning for. You're always in fear that the doctor is going to cut you off because what your body's saying to you, regardless of pain or no pain, let's just say I had no pain. But I knew that my brain was telling me I needed more fentanyl.

When I realized that there was a way to get even more dosages than I was authorized, and I'll tell you that is that I asked my pharmacist is, what's the earliest point that I could renew this prescription? And he said, if you get the prescription to us three days before, we can fill it. So you take that over seven years, I had a quite a storage of, uh, hydromorphine, oxycotton, and fentanyl patches, probably 50 fentanyl patches, three to 400 pills.

And on the gabapentin, probably a thousand over that time that I was able to store away. So we need to change the rules that the insurance companies pay will authorize the renewal of that prescription three days before. Well, people like me, that's terminally. facing these, uh, pain medications. We can circumvent a lot of the policies and procedures and, and find ourselves hoarding drugs for those rainy days.

So when I quit, I have a huge stockpile of medication just to prove to me that I did it. 

[00:10:08] Angela Kennecke: Now, today, we hear about people getting fentanyl who aren't seeking fentanyl. It's in every illicit drug, we know that. But we also hear more and more common, the addiction to fentanyl itself, that people are just seeking fentanyl.

And I think that's hard for the rest of us to understand because why would you want something that could kill you? But I bet it's easy for you to understand. 

[00:10:33] Neil Jackson: Yeah, I think the essence that, let's go right to the cartel issuance of fentanyl. I really don't believe that the cartel wants to kill anybody.

They want to get you addicted. 

[00:10:44] Angela Kennecke: That's what the DEA says. That's what the DEA says. 

[00:10:47] Neil Jackson: They don't care that a few of us have fallen off the charts and died from it. The majority of them. of the users of that fentanyl are addicted to it and they continue to return to it. It's just that easy and powerful of a drug that, um, you don't get the high, you don't get the euphoric high.

You get a feeling of, I think, total relaxation, you feel good. Some people say they get a little depressed when they take it, they get slowed down, that kind of stuff. I never felt that. The only time I felt that I was euphoric is every time I would take a morphine hit. When I was in the hospital, that really set me good, okay, but when I got to the, the fentanyl patch and the other drugs, I guess I accumulated such a tolerance to it that, that never really kicked in anymore about having this euphoric feeling, so I just kept on, you know, just kept going and going and going.

[00:11:41] Angela Kennecke: Neil grappled with an opioid addiction for more than seven years. He was ready to start searching for drugs off the street when he experienced a life changing moment. 

[00:11:54] Neil Jackson: There was one day there that I had a whisper in my heart. And it's a, it's an emotional whisper. That whisper said, Neil, you need to end the use of your drugs.

Because I had been in such a depressed state that life had no meaning. You know, I, I would look around, my family's not here, my wife's working, my children are gone. But I would think about all those pieces of, of my life. And God stepped in and here I am, right? 

[00:12:21] Angela Kennecke: I want you to tell me about the day that you decided that you had to get off these drugs.

Tell me more about that day. 

[00:12:29] Neil Jackson: Alright, well this is a political day to some people. I was very bored sitting here by myself trying to recover. My wife's working, my kids are gone. Turned on the television, I was a bored old man. I went to C SPAN, was a celebration in the Rose Garden of the White House of the most recently elected president in 2017, which was Donald Trump.

And at the beginning of his presidency, unbeknownst to me, he had ordered Chris Christie to head the study of the opioid alcoholic addiction problem in the United States, honor of his brother Fred, who had died of addiction. So I listened to it. And then I went to my screen and I downloaded the national report to the presidency and President Biden has done a similar probably a year ago, it came out and it really scared the hell out of me.

That's when God spoke in my heart that I, that's exactly the same time that that heart whisper came into me that I needed to get off. And after reading the, uh, the report, I called my wife, told her what I'd done in my excitement during the day. And she says, what are you going to do? I said, well, there's.

Bastards were talking to me. I've got to quit. I said, it's a very emotional thing. I said, I believe God spoke to me that I needed to get off. And the reason I keep saying that God spoke to me goes back to when I was first diagnosed with, it was terminal and it was incurable, chondrosarcoma. Okay, very rare, very rare positioning.

It was a huge task. This is a true statement by Dr. Francis Hornacek out of Mass General Harvard. One in one million chance of surviving surgery. And so when I walked in, I knew it was going to roll out. I would never walk again. And he asked me, he said, what do you think about that? And I said, well, I'll tell you what I told Dr.

Thompson when he gave me the diagnosis. I said, I don't hear any bad news and I'm going to get a little emotional with you, but I said, I don't hear any bad news. I said, I believe if I'm fortunate enough to come through the surgery, God will have a mission for me.

[00:14:42] Angela Kennecke: Neil believes that the mission started the day he committed to recovery. The truly unique aspect lies in how he was able to break free from the grip of drug use over 14 months.

[00:14:57] Neil Jackson: My, uh, professional practice is in risk analytics, risk tolerance and that kind of stuff. So, I'm always afraid of taking things so quickly without evaluating what are the impacted risks that's going to possibly accumulate themselves or come at me right away. So, when I thought about getting off the drugs, I figured I had to study the options.

The options were alternative medication, which I, at some point in time, when do you get off of that? I had to make that decision. And the other one was rehabilitative services, and I rejected that because I had just come out of, you know, 14 months of hospitalization where everybody controlled everything.

I didn't want to give up any more control than I'd lost before. So I said, well, what do you do? And I said, well, I looked at this thing called a fentanyl patch. 

[00:15:48] Angela Kennecke: If you're not familiar with a fentanyl patch, it's prescribed by doctors for those who are in severe pain. The patch is placed on the skin to deliver a specific dose of fentanyl.

[00:15:59] Neil Jackson: And I said, well, you come up with a way, and you say, okay, if I can just cover 10 percent of that patch, 5%, 10%, And slowly taper myself off and the technical terms titrate yourself off, then you can do that. So all along those time periods, I recorded the impact and the impacts were nothing. I had regained.

My health, I had stopped being depressed. I lost any migraine headaches. They went away. My eyes had glaucoma in them. That went away. I was no longer nauseated. That took over, you know, 12, 14 months. And then when I got off, there was no sense of, I want some more, I want to go back to it. 

[00:16:42] Angela Kennecke: After seeing life changing success with his homemade device, Neil couldn't help but wonder if it held the key to helping others find their way to recovery.

So he took a bold step. 

[00:16:55] Neil Jackson: When I got this idea and an engineer told me it would help somebody else, I came home that day and I wanted to validate what he just told me. So I wrote a letter to Francis Collins at NIH and I sent it to him because he was in that presentation with Trump. So that's the connection.

I wrote to him, and I emailed it to him, and this is crazy, but 20 minutes, I think 20 minutes on the dot, my cell phone lit up, and it was a 202 area code, which is Washington. I hesitated, but I answered it, and it was a woman who worked for, Dr. Collins. And she said, are you Neil Jackson? I said, yes. She said, well, you please hold for Dr.

Collins. And I said, sure. And she says, he's only got 10 minutes, but he wants to talk to you. You just sent him a letter. I said, yes, I did. So he got on. We talked for 40 minutes. He gave me the greatest encouragement by this statement. He said, Neil, he says, I'm calling you because I received your letter. He said, I've never received a letter from a patient to end an epidemic in the United States ever before.

And he says, you're going to do this. He says, but I'm going to tell you, I'm going to give you Dr. Montoya at NIDA as your mentor. He's my deputy there. And he says, I'm going to instruct him that he's going to walk you through this so that it gets to the FDA and gets approved. And I said, well, what do I need to do?

And he said, well, first thing, you've got to name it, change it. You call it a tool. And he says nobody in the medical business understands tools, so he says you're going to change that word to device. You'll get respect. And then he says, you're going to patent it before you send anything to us. Because he said, if you send it to us in its raw form, he says, somebody will steal it.

So I spent the next probably nine months in patent trademark law offices. And I've got a really fantastic patent lawyer who's fully experienced in medical devices. So we've got three patents on it. The patent lawyer, of course, the patents are always the same as if they've never seen anything like that, you know.

They've seen. But in this case, they said they've never seen anything like this.

[00:19:07] Angela Kennecke: Neal says he received a similar reaction during a pre submission meeting with the Food and Drug Administration. The device, named PhenBlock, is currently undergoing FDA assessment. And so what is the process to get FDA approval? 

[00:19:26] Neil Jackson: It's really tough, and it's expensive. This is, you're looking at the inventor, you're looking at the investor.

I've spent a lot of money interviewing attorneys. The cost is extraordinary, you know, in the thousands of dollars an hour to just get my submission in for classification of the drug. Fenblock, would it be class 1, class 2, class 3, based on how FDA evaluates risk, would be about 40, 000. I was able, over the course of years, to find a woman who had just lost her job as a medical device submitter for a major company.

So I brought her on board and we're able to, to get that through at a lot less cost. 

[00:20:07] Angela Kennecke: Have you run trials? Have you had others use it? 

[00:20:11] Neil Jackson: The reason I can't do that until I just had a addiction medical doctor in Arizona ask for samples. And I never knew that the FDA controls me as a producer. But the doctors coming to me now, part of my advisory team are saying to me is we can get samples out from you and we can implement them as samples.

There's no liability for the doctor. There's no liability on me. So late in the game, we're working on, on just what you're talking about. It'll work. There's no doubt it'll work. 

[00:20:46] Angela Kennecke: And I think that if it works, then it needs to be expedited, right? Because there are many, many people that could benefit from this and it could save lives.

[00:20:56] Neil Jackson: Yeah, that's what we're going to meet. I've got a meeting with Congress and we're going to talk about two things, the fentanyl test strip, and then the thing called fenblock. So I've got four doctors that are on my advisory team. They're all saying we got to go under either emergency use or right to try.

So I've got my congressman on notice and we've talked to him and we're working with him, you know, so this is in the fundamental stages, but they did it for COVID and COVID wasn't tested on humans until it got out in the public. I'm not, I don't worry about that. You can't hurt yourself with this thing. I mean, it's no drugs.

You can't overdose. You can only underdose. And if you underdose, well then kick it back a little bit, settle yourself down, and then begin your tapering off a little bit, a little later. You know, so you feel good. So you can't hurt yourself with it.

[00:21:50] Angela Kennecke: In addition to Fenblock, Neal is also working on devices to help those battling heroin. and cocaine addictions. 

[00:21:59] Neil Jackson: To get off of heroin, for example, you use suboxone, right? And that comes in a patch. So you take that principle of a patch and you start applying. What I've learned is very difficult time getting off of suboxone.

Almost depressing to a point like you're trying to get off of fentanyl or you're trying to get off of heroin. It's a tough road. So it's already authorized to be in patches and you can find it, you know, your doctors can prescribe it. And then once you get on the Suboxone, it gives your brain the chance to heal.

And then, okay, let's just say you're on Suboxone for a year. So what? Alright, at the time of the year comes up, you want to start to taper off of that Suboxone, six months out, whatever you and your doctor decide. Then you can go to the Narbox and wean yourself off over time. 

[00:22:47] Angela Kennecke: So, I see, it would be about the same thing as the fentanyl patch blocker, fenblock, it would be more suboxone.

But what about cocaine then, because suboxone doesn't work on cocaine? 

[00:22:58] Neil Jackson: Well, you're going to have to look at other things. We've got the Ministry of Health in Canada. Canada is the only country near us that has already authorized the commercial production of cocaine. And, uh, they're in trouble. And when I talked to the Ministry of Health there eight, nine months ago, they're just waiting for me to get through FDA, because they're excited with this.

opportunity to use cocaine in a patch and then wean the people off. 

[00:23:24] Angela Kennecke: Oh, I see. So the cocaine would be administered through a patch. That's how it would work. I see. Okay. Makes sense. 

[00:23:31] Neil Jackson: Let's say we got some street users that come into our harm reduction centers and they get a hit, you know, they get a shot.

What are you going to do about that? So we give them a shot and then give them a patch. You know, if they want to continue on, they'll manage themselves to your policy, which is your use the patch. And then we'll start to wean you off of the patch. If they want to violate that, then you just shut the door on them.

[00:23:53] Angela Kennecke: So you talked about how it took you 14 months to wean yourself off using your own invention, and how much better you felt, how all these health issues cleared up. How are you feeling today? How are you doing now? 

[00:24:06] Neil Jackson: Very, very good. Thank you for asking. It's a great life now because it's turned my whole direction around.

I feel really good, you know, I have my days. I have phantom pain. You can't get rid of that. I don't care what drug you, I, when I was on all the other drugs, I still have phantom pains once I amputated a leg. Your brain says, where's the leg, you know? You can feel pain in your toes and you're not even there.

So that's a Motrin Tylenol solution. Other than that, and that only occurs when, this is crazy, but that only occurs when weather changes. 

[00:24:40] Angela Kennecke: Interesting. I think it's just amazing. The entire story is amazing. Everything that you went through and then to come up with something like this and then to pursue it.

That's where a lot of people would have even dropped the ball because it's so hard to get something new through. 

[00:24:56] Neil Jackson: Well, right now I'm into a quarter of a million dollars. Wow. Now that it's in the FDA, I think that, uh, when I look for capital, it's a little better because they know it's there. Okay. They know that I've taken it the right steps and it's taken me a while because I've had to really steal out of my retirement funds at that point.

[00:25:15] Angela Kennecke: Yeah. Well, thank you for what you're doing to try to help other people through this product. And I wish you all the best of success with it. And I really appreciate you sharing the story with me today on the podcast. 

[00:25:31] Neil Jackson: Well, I tell you, I'm doing this for you and for Emily 

[00:25:34] Angela Kennecke: and 

[00:25:34] Neil Jackson: for those that are out there.

You know, I, I can only say to you, Angela is my love. You know, God teaches me different things every minute. This is one of the most important minutes. And I thank you so much. We'll, we'll fix this problem. And I feel so bad, you know. So my heart's out to you. 

[00:25:53] Angela Kennecke: Thank you. 

[00:25:55] Neil Jackson: Gratitudes greatly to you and your family.

[00:25:57] Angela Kennecke: Well, thank you for your compassion and your empathy and for all the hard work you're doing to try to help others. Really appreciate it. Thank you, Neil. Thanks.

Thank you for spending your time to learn about one of the most critical issues gripping our nation today, the deadly drug epidemic. Join us again next week for an eye opening conversation with the man who inspired Michael Keaton's character in the Emmy award winning series. 

[00:26:31] Dr. Stephen Loyd: It's kind of weird to see it on TV.

He won an Emmy for it. I tell people all the time, as my running joke is, that he was a hack before he got my role. And, you know, I shot him, shot him to stardom. Obviously, Batman wasn't in the things. 

[00:26:43] Angela Kennecke: Dr. Stephen Lloyd not only serves as the real life inspiration for the hit series, but also works tirelessly every day to help those battling substance use disorder and reduce the stigma surrounding the disease.

Hear how he's truly making a difference in our compelling discussion. Thank you again for joining us. Until next time, wishing you faith, hope, and courage. This podcast is produced by Casey Wannenberg King and Anna Fye.