Why I hate (part of) the 21st Century Cures Act

Even with SMA, my checkups have, for the most part, become pretty routine. Every six months, I drive 30 minutes to my nearest specialty clinic. While there, I see various doctors, each with their own unique vibe.

My neurologist catches me up on all the books he’s read recently.

My complex care doctor puts me at ease with his sunny smile and easygoing demeanor.

My wheelchair guy (for lack of a better term) jokes good-naturedly with my dad about manly things like nuts, bolts, and Allen wrenches.

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It’s all perfectly mundane. And I love that. Gone are the days of hyperventilating in the back of our accessible van, blaring the “Spirit: Stallion of the Cimarron” soundtrack because it was the only thing that calmed my preteen nerves. Even lab work is a nonevent these days, thanks to my neighborhood infusion center.

Still, I struggle. My therapist asks why I always jump to the worst possible conclusion, and I tell her I feel unlucky. I shouldn’t. I’m an extraordinarily lucky and privileged person. But the feeling sticks to me like greasy sunscreen. I am always waiting for the other shoe to drop. Even when things are good, I can’t help but feel that disaster isn’t far away.

Turning molehills into mountains

Even standard checkups are cause for concern. Last month, my complex care doctor ordered a round of lab work. He wasn’t concerned, just proactive, which is something I appreciate in a doctor.

I was stressed nonetheless. The last time I got labs drawn, my vitamin B12 level was sky-high — unsurprising considering I was taking 40,000% of the recommended daily value between my energy drink, electrolytes, and supplements. A quick web search suggested I could be suffering from blood cancer. Logic all but confirmed my high levels were due to my high intake, but I couldn’t shake the feeling that my levels would remain high after going off my various B12 supplements.

To make matters worse, test results are released immediately thanks to the 21st Century Cures Act. This means the patient can see the results before the practitioner has had a chance to review the findings. For most people, this isn’t a problem; they just wait to hear from their doctor. But if there’s an email in my inbox with lab results, I have to click on it, or my brain will chew itself into increasingly smaller pieces.

I’ve gotten myself into all sorts of trouble because of this. The first time my B12 levels came back high, I convinced myself — through some pretty impressive mental gymnastics — that I was dying of blood cancer. The next day, my doctor all but said he wasn’t concerned: Just lay off the supplemental B12.

If I had waited to hear from my doctor, I could’ve saved myself hours of heartache. But the results were in my account, and I needed to know, even if the knowing caused me more stress in the long run.

Complicated feelings about federal law

Six months later, I knew I’d be tempted to review the findings early, so I begged my mom to come with. That way, when the results came in, she could look at them with a cool head and tell me if I was dying.

“I hate the 21st Century Cures Act,” I said on the way to the infusion center.

It turned out that my B12 levels, while still high, had gone down 800 units. I was stressed, but my mom was unaffected. All my other results were fine. There was probably some sort of SMA-related explanation, like how my creatinine remains unnaturally low.

Unconvinced, I spent the next 24 hours in a haze. The following morning, I woke to a message from my doctor, who noted the decrease in B12 with the professional version of a thumbs-up and didn’t touch it again.

“Due to the 21st Century Cures Act, results are released immediately into your Patient Portal account,” my patient portal warns. “This means you may see your results before your provider. You may see labs that are outside the typical range or see other results listed that may concern you. Please note that these findings may not be clinically significant and need to be placed into the context of the rest of your care needs. Your provider will review and interpret your tests soon and help you understand the results.”

I know very little about the 21st Century Cures Act. It could be radically necessary for all I know. But it doesn’t change the fact that, on my worst days, I wish it allowed for a little more wiggle room.

Give patients the option to get results immediately. Put the power in their hands. Don’t give us hypochondriacs yet another thing to fret over.

Trust me, there’s plenty of anxiety to go around.

Note: SMA News Today 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.