Patients with a rare condition who rely on a certain hormone to ensure their quality of life are now pleading with the federal government for help after the critical medicine was recalled.
One of those patients is a man from Vermont's Chittenden County.
"It's really scary," said Ryan Polly, describing the uncertainty over the medication Natpara, which he thinks of as a lifeline.
Polly uses Natpara, a parathyroid hormone, so he can properly absorb calcium — which the body needs for healthy heart, nervous system, bone and muscle function.
"Without this medication, I could be sitting at work, and the next thing I know, I could be having a seizure or my heart could stop," Polly said in an interview Monday with necn. "And I have five kids; I want to be around for my kids."
This month, Natpara suddenly became unavailable. It was recalled over the risk tiny pieces of rubber from the injector device could contaminate the drug solution.
Patients were told to talk to their doctors before stopping using any supplies on hand, because suddenly stopping the medication could bring serious health emergencies.
"Just because it impacts a small amount of people doesn't decrease the urgency," observed Dr. Matthew Gilbert, an endocrinologist at the University of Vermont Medical Center, describing the small subset of his hypoparathyroidism patients affected by the recall.
Gilbert explained that some patients turn to Natpara when other treatments for their hormone deficiency just don't work well.
"I contacted all my patients on this medication as soon as I received word it was being recalled," Gilbert told necn. "The word 'terrifying' is being used by these patients, because they remember what it was like prior to going on this medication, where they were on high doses of calcium and their levels often would fluctuate back and forth, sometimes requiring visits to the emergency department when their calcium levels were too low, causing significant symptoms."
Drug company Takeda said in a written statement posted to its website Friday that it recognizes the recall has been extremely difficult on Natpara patients and their loved ones.
"Since the recall began on September 5, 2019, our dedicated OnePath team has reached out to the more than 2,000 Natpara patients in the US with information and support," the statement read. "Our commitment to patients remains our highest priority. We are working urgently with the FDA on a number of potential solutions to bring this critical medicine back to patients as quickly as possible and will continue to keep patients and healthcare providers informed."
Polly is now pleading with federal government to help expedite a fix, and he's getting support from his Congressman, Rep. Peter Welch, D-Vermont.
"Patients with rare diseases like Mr. Polly's rely on specialized medicines to cope with their illnesses," Welch said in a written statement supplied to necn. "While the manufacture of this medicine is interrupted, Mr. Polly and thousands of other patients face serious and even life-threatening health problems. My office is working with Mr. Polly to make sure that Takeda and the FDA at least provide patients facing this massive uncertainty with clear guidance and a timeline of when production will resume. No American should have to go without the medicine that they need."
Polly said he hopes a solution is identified soon to ease the anxiety of hypoparathyroidism patients like him.