Ain't Got Wings

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.

This is Beta Cell a show about people living with type one diabetes. I'm Craig Stubing.

Merilee: I was getting a business degree in management and, to be quite honest, bored. All I could imagine is my life sitting in a cubicle and I knew that was not what I wanted. And I happened to be at a college party talking to some random guy. And he said, "You know, you should really start to fly." And I said, "What are you talking about?" And he said, "No, really you sound like the type of, person that would love being a pilot."

Then I just started thinking about it and talking to my parents. And they were like, that totally seems like something you would do. And that was the moment when I said, well, I got to figure this out.

That's Merilee Riley.

Merilee: I mean, this is many years ago, mind you, early nineties. I remember the exact moment when the instructor that was sitting next to me said, "Okay, you want to take off?" And I had just gotten into this plane. I literally never been in a small plane in my life. And I thought he was nuts. I thought he was crazy. But I was like, sure, why not? You know, I'm in my twenties, I have no clue that there's any danger involved whatsoever and he let me take off.

And it was amazing. It's hard to explain to somebody that hasn't done something like that, how it feels, but I felt in control and I'd also felt very relaxed.

Craig: Did it feel like, in that moment, like this is where you were meant to be?

Merilee: Absolutely. So I did it right, right out of college. I graduated 92 and so I basically moved down to Florida and went to flight school. Became an instructor there and then quickly got hired at Atlantic Southeast airlines and started flying there. So I only flew for them for about nine months and then I got type one diabetes.

Back when I was diagnosed with type one diabetes, I was told that it would not hold me back, that I could do anything I wanted. Run a marathon, have a family, be a professional ice cream taster. But there were three things that were off limits, the unspeakables, that you can never do with type one diabetes, no matter how long you had it or how well controlled you were. Serve in the military, be an astronaut, and fly a commercial plane.

Merilee: You know, my last flight was my last flight and I didn't even know it was my last flight that's and that's really kind of sad. That was one of my harder things, is not realizing that that was the last time I was gonna fly.

I was young by myself and didn't exactly know where to go from there.

Andrew: The FAA has a number one responsibility to assure safety of the federal air space system and folks on the ground and as well as folks in the air. And under that lens, absolutely reasonable there would be restrictions on folks with type one diabetes.

This is Andrew Crider. He also has type one diabetes. He grew up wanting to be a commercial pilot, but found out by Googling it in high school, that it wasn't going to be an option for him.

Andrew: I'd say, not to be very morbid, but I spent couple of years with really no point. I didn't have an objective cause of like this thing isn't going to work out. And I'm a junior in high school at this point, what colleges am I going to apply to when the first two years of high school I wasn't spent like thinking about what I want to be when I grew up, because I knew.

What I ended up doing is getting into government and politics. I am government affairs specialist for PAMSA. PAMSA is Pilots for the Advancement of Medical Standards Association, which is a grassroots organization of persons with type one diabetes who are trying to earn either class one or class two medicals needed to exercise the rights of a commercial pilot in the United States of America.

Now, this probably makes sense, but anyone who wants to be a pilot in the United States needs to be medically cleared under the regulation set by the FAA. And these regulations, like Andrew said, are to make sure everyone stays safe. Perspective pilots submit an extensive medical history and go through a lot of screenings and tests to ensure that they're capable of flying. And based on the results, they can get one of three medical certifications to be a pilot.

The easiest certification is the third class, which lets you be a private pilot where you aren't paid to fly. The second and first class medicals let you fly commercially. With a second class, you can do things like towing, those big banners you see at sporting events or to be a flight instructor. And the strictest certification is the first class, what you need in order to fly passengers. If you book a flight from Los Angeles to New York, for instance, the pilot of that flight has to have a first-class medical certification.

Merilee: Those standards are higher, rightfully so, you're taking passengers. They need to make sure you're not gonna have a heart attack or pass out in flight and things like that.

And of course, everybody has something, whether it's a sore back to a disease, and some of those things are disqualifying and some are not.

So when Marilee was diagnosed with type one diabetes in the early 1990s, having already had her first class and had been flying passenger planes, she looked up the FAA regulations for medical certifications.

Merilee: It straight out said type one diabetes or, at the time, I think it said insulin dependent diabetes, was an absolute no. I was thrilled to be sleeping in the, the grossest hotels. Like I didn't even care. And I look back and I'm like, you gotta be kidding me, but I was so happy. I mean, I There's so many worst things that could happen to somebody, so it's hard to feel sorry for myself, but at the time it was like this just can't be happening, this can't be permanent.

And it looked like it wouldn't be. In 1993, that FAA changed the rules so that people with insulin dependent diabetes could get a third class medical, so Merilee could still fly privately if she wanted to rent a plane and just go up in the air. But she wouldn't be able to have that career she was hoping to. 22 years went by and, in 2015, the FAA announced that they were going to change the rules yet again.

Andrew: They changed the regulations from absolutely no way Jose, to we will assess it by a case by case basis, from a lawsuit from the ADA because you couldn't discriminate wholesale. You have to judge someone's medical fitness as an individual. And they said, okay, we won't do that.

I don't want to accuse someone of lying, but the first thing that is absolutely no evidence to back up that that was a true statement. For my national membership base, folks in PAMSA, nobody heard back.

Craig Stubing: The FAA simply refused to assess anyone. In effect, keeping the ban on people with type one diabetes in place. Fast forward 4 years later to November 2019, then Transportation Secretary Elaine Chao announced a new protocol so people with insulin dependent diabetes could finally get the first or second class medical certification that had been promised.

Andrew: The qualifications were just, you need to submit all these medical records like A1C doctors appointments. You need to see a board certified cardiologist. Have no history of episodes where you were low and out and needed someone else's assistance to recover from that. And that was a huge moment and a bunch of people who had been waiting since 2015 were like, yay, because that's a win.

Merilee: I was shocked when the list came out and I thought, well, here I go, I'm jumping in on this. And I had all of my doctor's appointments lined up. And it costs money. It's not like my insurance pays for all this stuff. I am covered for the basics, but to go to a cardiologist when I don't really even need a cardiologist. So be it, I'll spend the money. But it turns into be hundreds of dollars just to even get these medical appointments taken care of. So by the time April rolled around, I didn't think it was going to happen.

Craig: This thing normally takes a few weeks for a medical. So what was it like waiting? Did you just assume the worst?

Merilee: Yes, absolutely. I had been emailing, making sure they had my application, kind of just putting a bug in their ear. I knew that nobody had been approved yet. We were all quite frustrated.

Andrew: The most generous I can put it is they want to do the right thing. And from my conversations with the FAA in the DC office, they genuinely do. I think there's been a gross miscommunication in intention where a lot of the frustration and the stress that has come from folks having their entire life saying, you can't do this, to now saying, you can do this, but, in practicality, we haven't actually built a process for you to do it. What we were told is you can get your first and second class medical. Which is only technically the case, not practically the case.

Craig: So is the issue more like, you have to have a CGM, you have to submit number of days and data so that they can see your time and range. Is it just, FAA doesn't know what percentage that needs to be? Do you need to be 80% time in range? 88%? 95? And people are just submitting and the FAA is kind of deciding as they're looking at applications where that line is?

Andrew: Yeah, that's exactly what's happening. The FAA doesn't actually have formal standards for what it takes to be a type one diabetic. So for those who have applied and submitted everything that the FAA has asked for, they still go through a process where the FAA will ask them for more materials. Or come to a no because, throughout this entire year, the FAA has been trying to come up with the standards of what qualifies a type one diabetic to be good enough for these first or second class medicals. They don't know. So what's overbearing is all of these members, all the 156 applications, we're all Guinea pigs. And that is, that I think is what's unfair about this situation.

Merilee: I don't have any direction from the FAA as to what they even want. Are they looking for zero lows in the last six months or are they okay with five? And what do they call a low? Cause you know, some people say I'm below 70 and I'm low, other people say I'm below 80 and I'm low.

Four months after Marilee had submitted her application, she still hadn't heard anything.

Merilee: Somebody else had gotten theirs and they had posted on Facebook. And I thought, huh, well, I guess I should check the, the mail, you know, just in case. And I just walked down there and I came back screaming and I was like, oh my gosh, I got my first class and it's kind of a long letter, so you're not quite sure that you have it until you read the whole thing because there's a lot of ifs, a lot of but you got to do this. So I kept reading, I'm like, yeah, I'm pretty sure I got it. Yes, I, yep. Yep. I got it. And of course my kids were like all excited and I was just jumping around and hopping around and they're just laughing at me. And of course the teenagers want to take out Snapchat and video me and I'm like, no, you can't video me being excited.

Then realize this expires at the end of June. So they gave me something that is valid starting the date that I applied, which is back in December, and it expires at the end of June. Because it's only six months. And I thought you've got to be kidding me. How could somebody get a job and use this, and have it expire two months after they get it? How is this ever going to work?

Andrew: We have folks who have been just living with his life of compromise saying I'll never be able to live this dream. Or some folks, and some would say, this is way worse is folks who had lived this dream and then been told. No, now you can't. And when the first person got their medical, now, it's no longer life of compromise because the world says we can't, it's I have the power to live the life I want to. And everyone was very happy. Everyone was ecstatic. It was a great day. And then for a lot of our members we started looking at the mailbox to say, all right, now when is it my turn?

As of last year, 10 months after the announcement that people with type one diabetes would be able to get their first class medicals, only 76 applications had been approved. Some pilots, like Marilee, had to wait anywhere from six months to a year, and then just happened to be lucky enough to fit the criteria to get their first class medical. But now, instead of keeping pilots and limbo, the FAA starting to deny medical certificate applications. And through these denials, PAMSA members are learning what the criteria are, which, remember, where guidelines none of these pallets were given before they spent all that money on doctor's appointments in order to apply.

I won't read you the whole list, but here are the basics. First you have to wear a continuous glucose monitor for 90% of the time over the previous six months. Your GMI, the estimated A1C from your CGM, has to be under 6.5%. Your blood sugars need to be between 80 and 180 at least 70% of the time. And between 70 and 250, 90% of the time.

These guidelines are totally reasonable. No one is saying that they're too onerous. The issue is how the FAA has repeatedly treated people with type one diabetes starting all the way back in 1993. Qualified pilots, like Merilee, lost their careers because of type one diabetes and others, like Andrew, never got the chance to have the one they wanted. Careers that they both can do despite having type one diabetes.

After decades of fighting for the right, just to have the opportunity to show that they can manage their blood sugars well enough to be a pilot, they get strung along by the FAA. Spending hundreds of dollars at doctors, countless hours of massing paperwork, and expanding what little hope they still had a flying one day.

Craig: Do you have any sense of almost like a survivor's guilt? Like, do you feel bad that like you've gotten this and maybe someone else isn't going to?

Merilee: Absolutely. Yes. I mean, I know quite a few via Facebook and stuff, insulin dependent pilots, but there's about two of them that I don't understand, you know, and I feel guilty because one has been doing it for so long, pushing this process. And then other one has a job, and it has a long career ahead of him you know, he's, he's losing so much money by this. So yeah. You know, I don't know. Yeah, there's nothing to do about it. So I'm just going to be excited for myself and help. That's my goal as well, is to not just disappear and say, well, good for me, I got it, now I'm going to leave. But I do want to help the group so that this process gets smoother and I do have hope that it will get smoother. I don't think they can not get it smoother. It can't be much worse, so it's got to get better, right? So that's, that's where my hope is. And that's where I turn my attention to it. And hopefully in the end the FAA will also.

Craig: Do you feel like you're finally doing what you were always meant to be doing?

Merilee: Yes. I've had other jobs as well, but my main job the last 19 years has been being a wife and a mom and I've loved that and of course that's the number one priority, but boy, doing something for yourself that just sort of makes yourself feel fulfilled and relaxed even when you're stressed is really nice. And my husband even has said, you got to do this, this is what you want to do. And the rest of the family is we will do what we need to do, so stop worrying about us and we'll figure it out, we'll do what we need to do so you can go fly. So yeah, I'm pretty excited about it.