hATTR columnist Jackie Rubick-Gomez
Jackie Rubick-Gomez

Living with hereditary transthyretin amyloidosis (hATTR) has brought significant financial burdens to my world. These include decreased working hours, less supplemental income, and the extra cost of health insurance premiums. Of all these, one of the major financial burdens is loss of income.

My position has changed over the years, from being a head coach to being a preschool gym director. Although I still maintain the director’s title, I am unable to coach a competitive team and I am currently in the process of giving up my preschool coaching duties altogether.

My boss is very understanding of the physical struggles I am experiencing. He has offered me modified job duties, such as front desk duties during the evening, as well as supervising the preschool gym. Although it is reassuring there are other options available for me, there is a downside to such changes. There are not as many hours available as there were when I was coaching, specifically with the competitive team.

Also, there is more opportunity for higher pay for coaching a higher level of gymnastics. On top of that, I am now missing out on the supplemental income I once had when I taught private lessons.

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My poor balance and drop foot in both feet make it nearly impossible to participate in the activities I so easily mastered for 20 years. Not only are there fewer office hours available vs coaching, but I frequently lose out on pay because of hours missed.

This was a frequent occurrence when I was in the process of seeking a diagnosis. I had to drive 2 hours away to get the earliest appointment to see my neurologist and ophthalmologist. Driving back would take a better part of a day’s pay, not to mention the extra cost of gas. When I started infusion treatments, I also had to travel long distances. The time to travel plus the cost of gas would cost a full day’s pay every 3 weeks.

Digestion problems are frequent for those with hATTR. It is not uncommon to have to miss work because I feel too sick, dizzy, or weak to get out of bed.

The cost of health insurance premiums, copays, and medical procedures is another financial obstacle that I am faced with. Because I have frequent appointments and procedures, it is essential that I have a plan with a low deductible, which means a more costly premium. Although my employer covers half of my health insurance premium, I still have the other half taken out of my paycheck.

This can be a lot, especially if I have missed out on several hours in that particular pay period. Because hATTR can affect multiple organs, it is essential that I see multiple types of specialists. The specialists that I have seen so far are neurologists, a cardiologist, a urologist, GI specialists, nutritionists, and ophthalmologists—each with a $60 co-pay.