Reflecting on my experience in a clinical trial during the pandemic

Note: This column describes the author’s own experiences with TransCon PTH, now called Yorvipath (palopegteriparatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

“Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained.” — Marie Curie

It’s been six years since my first dose of TransCon PTH, now known as Yorvipath (palopegteriparatide), in Ascendis Pharma’s Phase 2 clinical trial of the then-investigational therapy. It has since changed my health and quality of life. Its approval by the U.S. Food and Drug Administration (FDA) in August 2024 marks a hopeful new chapter for people like me who have hypoparathyroidism. I think it also inspires confidence in the hope for future treatments down the road.

With hypoparathyroidism, my body doesn’t produce enough calcium, which is vital for many bodily systems. This is due to reduced levels of parathyroid hormone (PTH), which is produced by the parathyroid glands. When the parathyroid glands produce too little PTH, calcium levels become abnormally low and phosphorus levels rise. One of the consequences is that we patients have higher odds of developing chronic kidney disease.

Conventional therapy for hypoparathyroidism is oral calcium and either activated vitamin D (calcitriol) or vitamin D supplements. But, in my experience, this acts like a bandage by temporarily increasing calcium levels without replacing the parathyroid hormone my body needs to function normally.

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I was nervous about starting a randomized clinical trial, particularly regarding the safety of the then-investigational therapy. Still, I was grateful to be part of something that might truly change my life.

I arrived at Columbia University Irving Medical Center in New York in December 2019 with great optimism. I spent hours conducting lab work and other tests, and filling out paperwork. I learned how to administer the once-daily injection. From that moment on, I became known as patient No. 1 — the first hypopara patient dosed with what is now Yorvipath. I was advised to continue conventional therapy and return in two weeks.

I arrived back home in Florida, exhausted after a long day of travel. I had a holiday party to attend that evening, and I typically need time to recover after traveling. However, I didn’t want to be that old version of myself that canceled plans. So I administered my second dose of medication, got dressed, and went to the party.

After just two doses of the daily injection, I immediately felt a difference mentally, physically, and emotionally. It was the first time in a long while that I had fun at a party and wasn’t the first to leave. I started to believe that this treatment might be life-changing.

I returned to New York for another clinical trial appointment and rang in the new year on a high note. I felt like a million bucks; I felt alive again. It felt like the pieces of my life were finally coming together.

My favorite football team, the San Francisco 49ers, was headed to the playoffs, and I was fortunate to be invited to the game. I began to think that 2020 would be the best year of my life.

But then, I suddenly became ill.

The early days of COVID-19

I went to my local internist. After testing negative for the flu, I was prescribed a cocktail of medications and spent weeks in bed. I couldn’t go to San Francisco. (On a positive note, the 49ers won that game.) In retrospect, my doctors think I had COVID-19.

Being on TransCon PTH had made me feel invincible, but getting sick unexpectedly made me feel vulnerable, reminding me how unpredictable our health can be.

Several weeks later, when I’d recovered, I traveled back to New York, where the clinical trial coordinator confirmed that I’d been given the investigational drug, not a placebo. (I think my body already knew that.) I started tapering the calcitriol and my supplements. It was a bit scary, but I believed the TransCon PTH was working. I’d regained my energy and cognitive function, and my calcium levels had stabilized.

My trips to New York continued, facilitated by Ascendis, which arranged for my travel and transportation. In New York, I’d developed my own routines and felt at home. There were some hiccups along the way, but overall, I felt great — until early March 2020, that is.

At a March 11 appointment, I explained that I’d lost the vibrancy I’d felt at the start of the trial. My body felt off, I’d lost my energy, and I wasn’t thinking clearly. The doctor was considering increasing my dosage when the world shut down because of the COVID-19 pandemic. I rushed back to Florida, into the unknown.

There, I continued the clinical trial by utilizing my local doctor for lab work, and then returned to New York in late 2022. Two years later, the FDA approved Yorvipath.

The challenges this “Brave Butterfly” faced during that period of my life were complex. But, then and now, I persevered while navigating the unknown and spreading my wings of hope.

Note: Hypoparathyroidism 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 another 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.