Drug makers refuse to address shortages, put profit over people

Anne-Marie Tucker Your Turn

Guest columnist

While big pharmaceutical companies profit, children suffer due to shortages of essential medications like human growth hormone. Valued at $2.8 billion in 2022, the market for human growth hormone is predicted to reach $3.9 billion by 2031. Yet, HGH remains constantly out of stock, triggering shortage alerts for over a year now.

Growth hormone deficiency affects approximately one in every 4,000 to 10,000 children in the United States annually, constituting less than 0.03% of the population. However, for impacted children, human growth hormone is essential for their growth, so any shortage is debilitating.

My journey as an advocate and mother, navigating my teen son’s diagnoses and prescriptions (as well as the arduous process of filling them) has been nothing short of daunting. How is it possible that a single pharmaceutical company — like Novo Nordisk — manufactures more than one growth hormone medication, both of which are consistently out of stock for extended periods?

Coincidentally, this same company produces the diabetes and highly sought-after weight loss drug, Wegovy, both of which are also in short supply.

Last year my son was diagnosed with a rare disease, panhypopituitarism, a condition affecting only 1 in 9 million individuals. It’s a harrowing road to navigate, particularly for a growing child reliant on his parents to coordinate his care and medications.

Panhypopituitarism occurs when the pituitary gland malfunctions; in my son’s case, 6 out of 8 essential hormones were affected, including the growth hormone. It took us two years of misdiagnoses and futile treatments before finally finding an endocrinologist willing to delve deeper and uncover the real issue.

This journey began amid the chaos of the pandemic, with my son contracting COVID-19 and receiving the recommended boosters, coinciding with the onset of his health challenges. While it may take years to establish a definitive link between his illness and COVID-19, as a mother, I know my child’s health better than anyone.

He was born healthy, thriving even, with growth charts reflecting steady progress. Yet, suddenly, his growth stalled, and his health deteriorated, leaving us grasping for answers.

Managing panhypopituitarism entails a complex regimen of medications, including daily injections of growth hormone. However, accessing these medications has become a relentless struggle due to persistent shortages. The scarcity isn’t just inconvenient; it’s life-altering for my son and countless others in similar circumstances.

How can pharmaceutical companies prioritize profit over the well-being of children in need?

Furthermore, the inconsistency in medication availability adds another layer of stress to an already challenging situation. Pharmaceutical companies must be held accountable for maintaining adequate stock levels of vital medications. The lack of a coherent system for allocating these medications raises concerns about fairness and prioritization.

Should adults seeking hormonal treatments for anti-aging purposes take precedence over children with genuine medical needs?

As a mother advocating for her child’s health, I am exasperated by the unnecessary hurdles imposed by medical bureaucracy. It’s time for pharmaceutical companies to prioritize the needs of patients over profits and ensure consistent access to life-saving medications. We cannot continue to let our children suffer due to corporate negligence.

In conclusion, I’d like to share a valuable tip for others facing similar struggles: When faced with medication shortages, consider requesting alternative dosage options. In my experience, this simple adjustment has sometimes provided access to medications that were otherwise unavailable.

Amidst the chaos of fluctuating medication approvals and availability, it’s a small but significant step toward alleviating the burden on our children.

This past year has been a relentless battle, with medication approvals changing quarterly and availability remaining uncertain. Yet, as parents and caregivers, we remain steadfast in our fight for the wellbeing of our children, refusing to be silenced by bureaucratic red tape or corporate indifference. Anne-Marie Tucker, Jacksonville

This guest column is the opinion of the author and does not necessarily represent the views of the TimesUnion. We welcome a diversity of opinions.