Having a High-deductible Health Plan Requires a Lot of Strategizing

Growing up, I was mostly a healthy, overweight kid who seldom got sick. As an adult, I’ve had a career in the office equipment industry for over 30 years and have always had health insurance through my employers. No matter what type of plan was offered, I’d always pick the one with a low monthly premium and a high deductible. I never came close to meeting my deductible, so for many years, I never had to worry about it.

But all that changed after I was diagnosed with late-onset Pompe disease on Nov. 19, 2018. Once my neuromuscular specialist confirmed the diagnosis, it was time to establish my medical team, which would include a pulmonologist, cardiologist, and respiratory therapist. My goal was to eventually start physical and occupational therapy, too. Finally, a nutritionist was recommended, rounding out the team.

To the average healthy person, this might seem like a lot of healthcare professionals to see on a regular basis. But they are vital to my daily life with Pompe disease. They all help monitor the progression of my muscle weakness disease and track my breathing and muscle functions.

I am fortunate that I’m still able to work a full-time job and have health insurance. However, it’s up to my employer to decide which health plans to offer us employees. I have a couple options and must decide which one works best for my family and me. It wasn’t something I thought much about until I was diagnosed with Pompe.

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Planning ahead

I currently have a high-deductible plan, and every year the deductible resets. (Why it has to reset is a topic for another column!)

Now that my wife and I have returned from our vacation in Cancún, Mexico, it’s time for me to start scheduling some physical therapy (PT) appointments. But because I had to start over on paying my deductible on Jan. 1, I’m currently paying full price for PT. Plus, I have to factor in one or two specialist appointments a week. That’s a lot to spend out of pocket at the beginning of the year. It almost makes me not want to receive the treatments that are keeping me alive.

Since my diagnosis, I’ve been to three different PT locations. During the pandemic, I had to stop seeing one therapist for an entire year. Plus, it’s always a struggle finding a therapist familiar with Pompe since it’s a rare disease.

More often that not, I’m the one educating my physical therapist about Pompe. We must work together to create an exercise and stretching routine that benefits me.

Although I need to stretch and keep my Pompe muscles moving, I’m always thinking about how much the appointment will cost me. How long will it take to pay my deductible? Would I rather pay $150 for PT sessions in January, February, and March, or wait until I’ve hit my deductible in April or May? Then I’d only pay $20-25 for an appointment. It’s a struggle, a decision I now battle with every year.

Throw in seeing my cardiologist every six months and my pulmonologist every year, and it’s no wonder that so many people struggle with health issues. Even with insurance, many can’t afford to seek healthcare due to high costs and high deductibles.

It will be a bumpy start to the year as I continue “On the Road to Pompe.” Wish me luck.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.