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Bob Stanton: "There Aren't Many Groups Fighting for Patients, and Patient Advocacy Is Important"

Updated: Dec 22, 2023

Former commercial truck driver and patient advocate


Back in 2002, when I was working as a long-haul truck driver, my wife and her mother read an article in Reader’s Digest that gave the signs and symptoms of sleep apnea. Then one day at work, I was unloading appliances at a Sears store, and I had some chest pains. When I went to the doctor, they did an EKG that showed some irregular heart rhythms, and I also explained what my wife and mother-in-law suggested that I may have sleep apnea signs and symptoms.


[Editor’s note: A titration or titrating study is a sleep study for the purpose of determining the correct air-pressure setting for an individual’s CPAP (continuous positive airway pressure) machine. The study identifies the pressure setting needed to keep the airways open. Once an appropriate pressure is determined, the doctor writes a prescription to have that pressure (typically a range) programmed into the CPAP machine for the user.]

When I got the call, I drove for three hours to where my supervisor was, in Ohio, and explained to him what the doctor had said, thinking I would probably be routed back home to Chicago earlier than normal. But the fact that I had driven after being told I had sleep apnea meant I broke federal law, and I was basically fired on the spot. 

I was a commercial motor vehicle operator, right? Untreated sleep apnea is a disqualifying condition under the Federal Motor Carrier Safety Administration, so you can’t legally drive a semi truck or any commercial vehicle.

I’ve learned since that the same thing also applies to some other safety-sensitive occupations, such as commercial pilots, master mariners with U.S. Coast Guard certification, and some railroad employees. 


My supervisor knew all about sleep apnea in truck drivers, because he actually had sleep apnea himself—in fact worse than I did, I learned later. But, at the time, I didn’t know anything at all about how my sleep apnea interacted with or might affect my Department of Transportation medical card.

I spent almost a month off work before I was able to meet all of what I call the administrative malarkey involved with having sleep apnea and holding a DOT medical card, which also included almost $4,000 in sleep studies and the cost of a CPAP. 

This was back in 2002, before home sleep apnea testing and before auto-titrating CPAP machines were available, which meant I needed both a diagnostic and a titrating sleep study to set the right air pressure for my machine. At the time, I had an 80/20 insurance policy with a $1,000 deductible. So I paid the first $1,000 out of pocket and then 20% of the rest—that meant I spent $1,800 out of pocket. For a truck driver, that was pretty good insurance; these days, $3,000 to $5,000 deductibles are not unheard of, but you also can get tested and treated in the $1,400 to $1,500 range.

The way it works for any safety-sensitive position is once you're diagnosed, you have to demonstrate you are under current and effective treatment. In 2002, that meant I had to have the doctor say I was using the CPAP effectively for at least three weeks. Now you have to have at least one week, and it varies by which medical examiner you’re working with and how severe the sleep apnea is, but you have to produce compliance data to a DOT medical examiner to keep your DOT medical card.

As a long-haul over-the-road driver, I lived in a truck equipped with a sleeper berth. And if I live in the truck with a CPAP, I have to be able to plug it in. I also learned the hard way that you can’t use a CPAP machine with ambient air temperatures below about 40 degrees. Because if you don't have heat, when you're using the CPAP, the cold air from the CPAP is going to overwhelm your body's ability to keep itself warm. And you will go into stage-two hypothermia. People who go camping also learn that the hard way. When you’re in stage-two hypothermia, you can’t really warm yourself effectively on your own; stage three is coma and then death. So you really don’t ever want to go into stage-two hypothermia.

The only way to have power and heat in a truck in 2002 was to idle the truck engine. But at the employer I worked for, many of your bonuses and promotional opportunities were tied to meeting a series of metrics, one of which was not idling the truck at night. I ended up learning more about the Americans With Disabilities Act than I wanted to fighting over that with my employer.

But I wasn’t the only one, and while I was dealing with all of this with the company, other drivers who had sleep apnea were getting my contact information. So I started informally helping other drivers. Around 2008, after I’d been at it for several years, the Federal Motor Carrier Safety Administration issued their first of several sets of guidance to DOT medical examiners about screening, testing, and treatment for sleep apnea as it relates to the medical card. That created a huge political storm within the trucking industry and prompted some other drivers and myself to form a volunteer support group, Truckers for a Cause, for truckers with sleep apnea. 

That ended up getting me invited to speak at a lot of different medical conferences, and in 2009 I went to the Sleep conference as part of a panel on sleep apnea in commercial motor vehicle operators. That started my volunteer advocacy journey, which has been going on ever since.

What I learned about sleep apnea was that it comes on gradually over the years. My feeling of having to fight to stay awake, I thought that was just normal. When I drove long-haul over the road for two years before I was diagnosed, I thought every truck driver drank a liter of Mountain Dew before lunch. I wouldn’t say I really noticed the symptoms until after I had been diagnosed and treated. And then it was like, “Oh my God, this is what normal is!”

I also dealt with the mental health issues around untreated sleep apnea. Looking back on that, much of what I was dealing with were untreated sleep apnea symptoms.

My wife also has told me more than once that if I hadn't gotten treated for sleep apnea, she probably would have divorced me, because I'm not a very nice person when I'm not effectively treated. I'm a grumpy S.O.B.

The first night I put on the first CPAP mask I ever used, it felt so good. I had no problems. I was just one of those rare people who had no problem with it. My opinion is that the more severe a patient’s sleep apnea is, the more likely they are to be compliant early, because there’s such a huge difference in how they feel after using it. In my case, it was the relief of not constantly fighting to stay awake. When I am not on CPAP, I am short-tempered, grumpy, and not a nice person to be around. Before getting diagnosed and treated, I also had the typical depression of untreated sleep apnea, and no longer having that depression is a huge improvement in my life. When I’m on CPAP, I’m at least pleasant enough that my wife hasn’t divorced me! 

I think there have only been one or two nights in the 20 years since I was diagnosed that I didn’t use CPAP. One of those nights was when they wanted me to do a new diagnostic study, so I had to do a full night in a lab without CPAP, and I felt so horrible the next morning. I had problems staying awake just to drive from the lab back to the truck. I drove back to my truck, got in and went back to sleep on CPAP. 

I invested in a travel CPAP early, so I had a self-contained travel CPAP with a battery. That way if I had a mechanical problem or need to hop out for a motel, I could. For me, it’s unthinkable to not use the machine for a night.

A lot of people don’t like the marks the mask straps can leave. Well, there is a company that makes microfleece pads for virtually any CPAP mask on the market. But they’re not covered by insurance, and they’re not going to be available on many of the DME sites, so people never hear about them. And the insurance reimbursement guidelines for a CPAP mask’s headgear only allow replacement every six months, but it’s rare that the Velcro straps last six months. 

The other part of this is educating the medical professionals. 

When a patient comes to a sleep lab, they should ask the patient, “Are you employed in a safety-sensitive position, like a truck driver, airline pilot, or professional mariner?” If the patient answers, “Yes,” the lab needs to know a couple of things to do, starting with copying their government-issued ID and adding it to the chart.

In safety-sensitive positions, we have to have proof that the sleep study was done on the person who is actually going to use that study for a safety-sensitive physician medical exam. I’ve dealt so many times with drivers who went to a lab, paid the fees, and got a sleep study that came back negative, but then they had to repeat the sleep study because the lab forgot to put a copy of their ID in the chart.

That can be prevented if the medical professional doing a screening starts by asking, “What do you do for a living? Is your job a safety-sensitive job?”

If you’ve got a patient who is a driver or someone in a safety-sensitive position, you need to put them on a CPAP that has an internal modem. That way, you can remotely access their data and print their DOT reports without physically having to transfer a card or an AI code or a QR code to get a compliance report, because drivers need those compliance reports. 

 

There aren’t a lot of groups fighting for patients, but patient advocacy is really important for those kinds of things. One of the things that got me started with ASAP was that they were willing to make comments to the Federal Motor Carrier Safety Administration, and did comment, on the medical examiner handbook’s sleep apnea section.

 

So the doctors scheduled me for both a stress EKG and a sleep study. It was kind of funny: when the stress EKG cardiologist looked at the earlier EKG, he said, “Why are you here? These are typical untreated sleep apnea rhythms. You don’t need to see me. Get the sleep study.”

 

The sleep study came back with severe sleep apnea. My untreated AHI [apnea-hypopnea index] is about 43, suggesting I have severe sleep apnea. I did the sleep study on a Monday night, and on Wednesday I got a call from the doctor’s office with the results and wanting to schedule me for a titrating study.

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