PERU - For more than eight years, Hayes Purdy has made the trip to Riley Hospital for Children in Indianapolis to receive a special infusion of antibodies to boost his immune system.
The 11-year-old Peru native has a rare immune disorder called hypogammaglobulinemia. Without the infusion, known as an IVIG, Hayes would develop infections all over his body.
Hayes always has been able to receive the infusions, which he gets every month through tubing hooked up to a vein in his chest.
That’s because a national shortage of plasma-based infusions has left hospitals scrambling to supply patients with the sometimes life-saving medicine like the one Hayes receives.
Dr. Kathleen Overholt, the pediatric hematologist and oncologist at Riley Children’s Health, said the shortage hit the hospital this month, forcing them to begin rationing IVIG infusions. Patients with the most serious and life-threatening disorders will receive the medicine first, while others have to wait until more arrives.
“This is the first time I’ve experienced this kind of shortage,” Overholt said. “... We’re crossing our fingers that we’ll get some soon. Right now, we’re just doing the best we can.”
John Boyle, president and CEO of the Immune Deficiency Foundation, said the reason for the nationwide shortage is complicated, but it boils down to one basic issue:
There isn’t enough plasma available to keep up with demand.
“Right now, the plasma supply is tight — here in the U.S. and globally,” Boyle said in an article published on his organization’s website. “The need for plasma and plasma-derived products grows each year, but the complex nature of Ig [infusion] products … means that it takes time to increase the supply. It’s not as simple as churning out more pills.”
He said the tight supply of plasma disrupts the entire supply and delivery chains for infusions, including manufacturers, distributors, specialty pharmacies and various sites of care.
Lindsey Reichelt, a communications director for BioLife Plasma Services, which has plasma collection centers throughout Indiana, said the center in Kokomo has seen some year-over-year growth in donation rates the last couple of years, and the company expects those rates to stay steady.
However, since all plasma collected is processed at a central manufacturing facility and the medicines are then distributed, the donation rates at a center don’t directly correlate with the availability of medicines for local patients, she said.
Reichelt said the main issue is the fact that manufacturing these therapies is complex and lengthy.
She said it takes around six months from the time of the plasma donation to the delivery of the treatment to a patient. And creating the infusions takes a huge amount of plasma. To treat just one patient for hemophilia, it takes 1,200 plasma donations.
Immune Deficiency Foundation President Boyle said the issues around the national shortage of immune-boosting infusions may be complex, but there is a fairly simple solution.
“Ultimately, the issue is that the world needs more plasma, and the only good way to make that happen is to collect more plasma,” he said. “The one thing that we can all do right now is to encourage people to become regular plasma donors if there’s a collection center anywhere near them.”
And until there is more plasma, patients like Hayes will have to wait for an infusion.
Vicki Bowman, Hayes’ mother, said without the treatment, his immune system will be severely weakened, putting him jeopardy of becoming sick. That means they’re being extremely cautious.
“I told him not to touch any walls or door handles or railings,” she said. “This takes him back 11 years ago, when he was sick all the time. But what can we do? We can’t get his infusions.”
Dr. Overholt said the companies that make Hayes’ treatment aren’t offering details on why they aren’t supplying the hospital with IVIG infusions, and there’s no guarantee there will be more anytime soon.
She said in Hayes' case, not receiving an infusion isn't life-threatening. But for some, they could be at serious risk if they don't get their treatment.
“For patients like Hayes, it’s more about quality of life to keep him out of the hospital with something worse," Overholt said. "But for those who had a heart transplant or have severe bleeding, it can lead to mortality and death."
In the meantime, while hospitals and patients wait for more medicine to arrive, she encouraged anyone who can to donate plasma.
“We use blood and plasma in so many different places in a hospital,” Overholt said. “Tons of it. It’s always needed. I’d always advocate for people to donate.”