Finley Owens will be 3-years-old in July. But he won't be gorging on birthday cake or polishing off a slice of pizza at his party. Finley suffers from a rare condition called hypoganglionosis, where his intestines lack enough nerve endings to fully digest food.
As a result of his condition, Finley subsists almost entirely on intravenous nutrition drugs called total parenteral nutrition, or TPN. At night, his mother, Nicole Gerndt, hooks him up to pump that steadily infuses his blood with a white liquid concoction made of essential fats, vitamins and minerals over 10 hours. The liquid goes straight into Finley's vena cava, the largest vein in his heart.
"Sometimes in the morning he's up and still attached," said Gerndt. "This morning at 5:30 he wanted to get out of bed. "We'll say, 'You have your line [you have to wait].' ... He'll say 'Why?'"
When this system works properly, Finley is able to spend his daylight hours like any other kid. He can play in the dirt with his favorite toy cars and obsess about fire trucks. But when this finely-tuned routine is disrupted, Finley is at risk for suffering a host of nutritional ailments including anemia, calcium deficiency and generally feeling miserable.
Gerndt said that at the end of 2012 she began to get calls from the pharmacy that supplies Finley warning her that core ingredients in Finley's TPN, such as calcium, phosphate and selenium, were becoming scarce. Without these nutrients Finley is at a higher risk for suffering a nutritional deficiency during a key growth period.
There are only a few providers of TPN in the United States. The drugs are difficult to manufacture and if one batch of critical TPN components like phosphorous or calcium goes sour it can send ripple effects through the industry as another supplier tries to pick up the slack by filling the additional orders.
At the end of last year, one critical supplier of TPN, American Regent/Luitpold, temporarily shut down production to deal with quality control issues, according to the Food and Drug Administration. It is not completely clear that the shutdown of American Regent/Luitpold led to shortages in Finley's medication, but the FDA said the company was the sole provider of many TPN components and that other manufacturers of TPN had difficulty supplying additional orders that were supposed to be produced by American Regent/Luitpold.
Calls to American Regent/Luitpold were not immediately returned.
Patients reliant on TPN range from adult cancer patients unable to eat solid foods to premature infants lacking fully formed digestive systems. Many patients like Finley have gastrointestinal motility disorders, meaning they can't properly digest food, and rely on TPN to get all or most of their nutrients.
Pharmacists describe the TPN shortages in recent months as extreme. Dr. Steve Plogsted, a pediatric pharmacist at Nationwide Children's Hospital in Columbus, Ohio, works with American Society for Parenteral and Society (A.S.P.E.N.), is concerned that continued shortages will not only put patients in immediate danger but could lead to long-term health effects like bone malformations from calcium deficiency or stunted growth from a lack of zinc.
"People think it's just nutrition so it's no big deal," said Plogsted. "We're trying to allocate what we can. We give newborn babies what we can, because they don't have any stores. ... We don't know the long-term outcome for these little guys