I’m at a crossroads of hypoparathyroidism treatment

“Every new beginning comes from some other beginning’s end.” — Seneca

Labor Day on Sept. 1 marks the end of summer and the start of a new school year. For me, it’s always symbolized new beginnings, particularly regarding my health. I cherish the anticipation of a fresh start. While change can be scary, as a brave butterfly, I embrace it with hope and optimism.

This Labor Day weekend, I’ll head to New York City to see my endocrinologist, Mishaela Rubin, whom I started seeing in 2018. She and I embarked on a clinical trial together for what was then known as TransCon PTH, now called Yorvipath (palopegteriparatide), following its approval in the U.S. last year.

In those early years of the drug’s development and approval, the pressure of being among the first to experience it in a trial was scary for both of us. But our shared participation made it less daunting. Our relationship, built on trust and knowledge, has evolved over the years, making us a great team. We continue to inspire each other on and off the field, so to speak.

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Those six years from the first injection to Phase 3, and then eventual approval, were like a roller coaster, but we persevered together. That perseverance is a testament to the resilience of the human spirit. We faced numerous challenges, including the COVID-19 pandemic, which disrupted our regular schedules and added an extra layer of complexity to the clinical trial.

The subsequent approval process by the U.S. Food and Drug Administration was no less daunting, with its stringent regulations and need for extensive data. But together, we paved the way so that others with hypoparathyroidism can access Yorvipath.

Decisions, decisions

Columnist Bari Vapnek and endocrinologist Mishaela Rubin attend a conference together in 2023. (Courtesy of Bari Vapnek)

I now find myself at a significant crossroad, unsure of which direction to take. It’s been six months since my participation in the clinical trial ended. Since then, I’ve gone from a once-daily injection of 60 micrograms (delivered via two 30 mcg shots) to a single 30 mcg injection, plus calcium and Rocaltrol (calcitriol), delivered orally three times a day. I’ve been hospitalized multiple times. I’ve fought insurance companies for drug approval, despite having been on the medication for years. Now I have to figure out why my body is reacting the way it is, requiring more and more medication over time.

I call my life “the great unknown,” a reference to the uncertainty and unpredictability that come with managing a chronic condition like hypoparathyroidism and participating in a clinical trial.

As I prepare for a crucial discussion with Rubin, I’m filled with a mixture of hope, anxiety, and uncertainty. The advancements in hypoparathyroidism research continue, with the biotech company Septerna currently conducting preclinical tests to identify an experimental therapy for hypoparathyroidism, with the hope of starting clinical trials in 2026. Earlier this year, MBX Biosciences finished enrolling participants in a Phase 2 clinical trial testing MBX 2109 in people with chronic hypoparathyroidism. And Ascendis Pharma is sponsoring an upcoming Phase 3 clinical trial to investigate the safety and efficacy of palopegteriparatide at doses greater than 30 mcg (for patients like me).

As I face this crossroad, I’m confronted with a significant decision: Do I continue with the standard of care plus Yorvipath and remain unstable, should I hope to be among the few selected for the Ascendis-sponsored trial with Rubin, or should I discontinue Yorvipath in anticipation of some other future trial? Unfortunately, neither Rubin nor I have a crystal ball, and we don’t know yet what’s in store for my future.

The complexity and uncertainty of this decision weigh heavily on me. Still, I find solace in the fact that Rubin and I are a team, and trust is the cornerstone of our partnership. That provides me confidence as I navigate difficult choices.

One thing is certain: This brave butterfly will soar high and spread wings of resilience for everyone who’s been diagnosed with hypoparathyroidism. I’m grateful my story will continue.

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.