Cathy Osten

Sen. Osten, Rep. Conley Advocate for People With PKU and Their Dietary Needs

After hearing from a Norwich mother who detailed her regular fights to have her insurance company pay for the special formula needed to keep her children healthy, insurance companies in Connecticut would have to pay more of the cost of the expensive, special food needed by people diagnosed with phenylketonuria (PKU) under a bill proposed by state Senator Cathy Osten (D-Sprague) and state Representative Christine Conley (D-Groton).

Senate Bill 319, “AN ACT REQUIRING HEALTH INSURANCE COVERAGE FOR MEDICAL FOODS FOR INDIVIDUALS DIAGNOSED WITH PHENYLKETONURIA,” is currently before the legislature’s Insurance and Real Estate Committee.

According to the Mayo Clinic, PKU is a rare inherited disorder that causes an amino acid called phenylalanine to build up in the body. Without the enzyme necessary to process phenylalanine, a dangerous buildup can develop when a person with PKU eats food that contains protein or aspartame. This can eventually lead to serious health problems. For the rest of their lives, people with PKU — babies, children, and adults — have to follow a diet that limits phenylalanine, which is found mostly in foods that contain protein.

There are roughly 16,500 people living with PKU in the United States today, according to the National PKU Alliance.

“The legislature is very aware of the problems that families face with the cost of medical drugs and supplies, and in recent years we’ve passed laws requiring insurance coverage for a variety of medical conditions, from insulin and hearing aids to ultrasounds and prosthetic devices. I don’t see where a PKU diet is any different,” Sen. Osten said. “And we’re not talking about a minor inconvenience here. We’re literally talking life and death.”

“PKU is a devastating disease, and a proper diet plays a crucial role in maintaining the health of someone afflicted by it,” Rep. Conley said. “Families should not have to sacrifice the health of their loved one because of an overwhelming financial burden.”

Sen. Osten and Rep. Conley submitted the proposed legislation after hearing last year from Candice Flewharty of Norwich, who detailed her family’s struggles with their insurance company only covering half the cost of the low-protein formula for their two children with PKU, ages 15 and 12 – costs that average about $36,000 per child per year, leaving the Flewhartys to pay the other $36,000 out of their own pockets.

“At least once a year, and recently about every three months, Anthem refuses to cover our formula. It has happened with both of our kids’ prescriptions,” Flewharty wrote. “We will figure out how to pay for their formula and food, or we will need to move to a state that has a better mandate.”

Sen. Osten is scheduled to speak on this issue when she addresses the Connecticut Rare Disease Action Network and National Organization of Rare Diseases virtual Zoom meeting on Rare Disease Day, February 26, 2021, from 9 a.m. until 10:30 a.m.