Six-year-old Kaitlyn Ford's compounded medications sit in her family's refrigerator.

Credit: Gabrielle Emanuel/WGBH News

After Meningitis Outbreak, Insurers Are Reportedly Reluctant To Cover Compounded Medications

June 26, 2017

Later today, a judge will sentence Barry Cadden, a local pharmacist who was found guilty of fraud and racketeering.

In 2012, more than 60 people died and hundreds became sick after injections from Cadden’s compounding pharmacy sparked a nationwide meningitis outbreak.

The impact of the outbreak has reached far beyond those directly affected. In the aftermath, regulations on compounding pharmacies increased and insurance coverage for drugs from compounding pharmacies decreased.

One person who still feels the impact is 6-year-old Kaitlyn Ford.

“I had no issues whatsoever, early on.”

Walk into the Ford house in Wrentham and you’ll see one of Kaitlyn’s favorite toys: a kick piano. It’s the kind of piano where you lie on your back and play it with your feet.

Kaitlyn was born with a brain malformation that has left her non-verbal and with limited mobility. She loves music and this toy lets her play little jingles.

“She’ll just keep banging it and kick it,” said Kaitlyn’s dad, John Ford. “She loves it.”

When Kaitlyn was born, she struggled with seizures. Ford and his wife realized after a few months that if she stopped having carbohydrates, her seizures got better. But many medications include ingredients with carbs.

“She can't have carbohydrates in her meds,” said Ford. “So, the only way you can get that is through compounding.”

Compounding is when a drug is custom-made for one patient. The vast majority of medications are mass-produced, but when someone is allergic to an ingredient or needs a non-standard dose they go to a compounding pharmacy.

The Fords found a pharmacist that could make all seven of Kaitlyn’s medications carb-free. The drugs were expensive but insurance covered it.

“I had no issues whatsoever, early on,” said Ford.

However, that didn’t last. Soon, Ford was having trouble getting his insurance company to cover the medications. It was such a hassle that the family’s compounding pharmacy eventually turned the Fords away.

For the past several years, the Fords say they've struggled to coordinate with a new pharmacist, their doctor and the insurer's pharmacy benefit manager. Ford says despite really liking his new pharmacist, he’s often caught in a web of phone calls and paperwork trying to ensure Kaitlyn’s prescriptions get approved.

“It's literally hours. Hours that we can't really invest. We have a daughter that comes home and she needs 24-hour attention,” said Ford. “It’s like this dark cloud.”

Tightening Insurance Coverage

“Insurance companies have really clamped down on the coverage of compounded medications,” said Todd Brown, a pharmacy professor at Northeastern University and executive director of the Massachusetts Independent Pharmacists Association.

Brown says the reduction in coverage came after the meningitis outbreak at the New England Compounding Center.

Brown says insurers saw the headlines and they saw other compounding pharmacies taking advantage of lax rules, so they tightened compounding coverage across the board.

“I think this pendulum has swung too much,” Brown said. “I totally agree we need to weed out the bad actors, the $10,000 pain creams claims. But we also need to allow the claims that are appropriate. There are claims that should be paid and aren’t being paid by insurance.”

Without coverage for compounded medications, Brown says patients often end up needing multiple substitute drugs “or they end up taking less effective products or they end up having a procedure instead of a medication that could have solved their problem.”

Todd Brown says, “the overall result is it increases the cost of health care.”

But pharmacy benefit managers disagree.

“We’ve saved our clients over $2 billion. And we’ve reduced the cost per member for compounds by 96 percent,” said Brian Henry.

Henry works for Express Scripts, which is a large pharmacy benefit manager. They are hired by insurance companies and employers to cut pharmacy expenditures while maintaining outcomes.

Henry says his company noticed the skyrocketing cost of compounded medications. “In many instances,” he says, “there were compound drugs that were being used that were completely unnecessary and weren’t even FDA approved.”

Experts acknowledge compounded medications should be used sparingly. Since these drugs are made individually, they are often riskier than mass-produced drugs. Yet, they say, compounded drugs can be necessary.

Henry's company is not involved with the Fords' case, but — he says — if a patient demonstrates that they really do need a compounded medication, it will be covered.

However, that’s not much consolation for the Ford family.

“It's just a complete run around,” said John Ford. “My wife was in tears last week just saying: 'I don't know what else to do.'”

Right now, the family has coverage for Kaitlyn's compounds, but they say it’s a constant challenge.


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