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Posted on 3. November 2022

Juggling

By Dawn DeBois

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There is no doubt about it. It’s an ongoing juggling act to be chronically ill. If we aren’t juggling our energy stores, we are juggling our med schedules. And nobody can dismiss for a moment the juggling chronically ill patients and their families must do to pay for those meds. If meds are in the rare disease category, it’s a bigger juggle. I’m beginning to think I should have gone to clown school instead of college.

I’ve always had to juggle my energy stores — even in high school, long before any chronic illness diagnoses infiltrated my medical charts. I swam competitively and always wound up in bed, sick, the week after school vacation. My body couldn’t handle the extra toll placed on it by the intense training. Whenever I tried to join my friends for all-nighters, I’d pay for it the next day with my body in pain. It wasn’t until I had a few diagnoses and conversations with my doctors that I learned to nap and rest to plan for extra energy expenditures. I also learned not to attempt all-nighters.

I recall listening once to a friend who was upset that she had been told by a doctor she would need to take one thyroid pill every day for the rest of her life. It was unfathomable to her. As I listened quietly, I thought of the med drawer I have myself, filled with countless bottles of daily meds, along with my subQ infusion organizer cart. All my meds are a part of my daily life with no end in sight — unless something is replaced by something better that comes down the pharmaceutical approval pathway. Each day, I have a routine in place to make sure all my meds are taken with food, or without, and the right number of times a day. To take just one simple thyroid med a day, a half hour before food, way back in my 20s seems so simple compared to now. My routine works great when I’m home. But when traveling, which I love to do, requires mass production to ensure my meds are organized in such a way that all will be taken appropriately. Traveling across time zones makes it even more challenging. Unfortunately, there isn’t a med organizer complex enough to do the job.

Which brings us to the reality of paying for these medications. All chronically ill patients and their families know the challenges and fears. There are Medicare and Medicaid programs, product reimbursement cards and patient assistance plans that can help; but all of them come with requirements, income limits and, of course, there must be funding. This is probably the biggest source of juggling stress that chronically ill patients face. To qualify for some programs, we must live like paupers. If we are doing well physically and want to attempt to better ourselves financially by returning to the workplace, we risk losing our safety nets. Worse yet, for rare disease patients, some of those safety nets such as patient assistance programs are available only for FDA-approved treatments. Countless rare disease treatments are off-label and thus do not qualify for assistance programs. I know I don’t need to remind any fellow zebras that rare disease meds are the most expensive on the planet!

Who else has been doing a lot of juggling? Maybe we should start a circus?

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