David Watson found out after becoming seriously ill as an eighth grader back in 1998 that he has a rare genetic liver disorder.

Called Wilson’s disease, it means that his liver can’t remove excess copper from his body. Over time, the metal, found in trace amounts in food and water, can build up and become toxic. Untreated, it can cause life-threatening organ and neurological damage.

To clear the metal, the Lincoln man started taking a drug called Syprine. At the time, it cost about $1 a pill. Watson took six pills a day.

But in recent years, the tab for his monthly prescription — 240 pills — has skyrocketed. When he went for a refill earlier this year, Watson, 35, learned that there was a problem with his insurance coverage. With it came some serious sticker shock.

He could pick up a 30-day supply of the drug without insurance for the retail price of $102,296.

“I cannot afford $102,000 a month,” Watson said. “Mortgaging my house wouldn’t get me real far.”

Watson described his dilemma earlier this summer at a conference on what states can do about health care costs.

Nebraska Attorney General Doug Peterson, who organized the conference, invited Watson because his situation illustrates how such costs “can be completely untethered” from what’s reasonable, a spokeswoman said.

Lowering prescription drug prices and increasing transparency has been the subject of proposals in statehouses and in Washington, D.C.

Sen. Chuck Grassley, R-Iowa, has co-sponsored a bipartisan bill that would add out-of-pocket maximums for Medicare beneficiaries and penalize drug companies if their prices rise faster than inflation, among other things.

State attorneys general have also targeted another portion of the prescription drug marketplace — generic drugs. In May, Peterson joined 43 other attorneys general in a lawsuit against Teva Pharmaceuticals and 19 other generic drugmakers. The lawsuit alleges a broad conspiracy to artificially inflate and manipulate prices, reduce competition and unreasonably restrain trade for more than 100 different generic drugs.

For some time after Watson started taking Syprine, the price of the drug stayed roughly the same.

The drug was sold in the early 2000s and again in 2010 to Valeant Pharmaceuticals, renamed Bausch Health in 2018.

Between 2010 and 2015, the price of 100 Syprine pills increased from $652 to $21,266, according to a report released in December 2016 by the U.S. Senate Special Committee on Aging. Syprine and several other drugs were featured prominently in the report, which addressed sudden price spikes in prescription drugs no longer under patent.

The tab for Watson’s monthly prescription had mounted to $51,040 by 2015. But Watson didn’t pay that much out of pocket. His insurance covered the bulk of the cost.

But because of high prices for the name-brand drug, people with Wilson’s disease have long been waiting for generic versions.

But the arrival of several generic versions of Syprine — which has been available since the 1960s and is no longer under patent protection — hasn’t substantially lowered prices. At least not yet.

Teva introduced one generic version of the drug in early 2018. The wholesale price, according to Elsevier’s Gold Standard Drug Database, was $18,374 for 100 pills. It’s currently one of six generics listed in the database; they range in price from more than $19,000 to just under $10,000 for 100 pills.

Dr. Michael S. Sinha, senior author of a forthcoming paper on generic drug pricing in the Hastings Law Journal, said in an email that markets for drugs for rare conditions such as Wilson’s disease often operate quite differently from those for more commonly used medications, such as cholesterol-lowering drugs. Sinha is an affiliated researcher at Brigham and Women’s Hospital, a teaching hospital of Harvard Medical School.

Manufacturers of more widely used drugs typically are willing to sacrifice price for volume. And even once generic competition ensues, Sinha wrote, it can take time for prices to come down.

Prices for generic versions of the drug Watson takes may not have declined immediately because there is so much profit to be gained by setting the price high and waiting for external price pressures to drive it down over time, he wrote.

Mary Graper, vice president of scientific affairs at the Wilson Disease Association, said she’s surprised that the prices haven’t come down faster, although a generic for $9,998 would be a substantial reduction.

“Patients are struggling with the high costs,” she said. “But they don’t know why. With the rarity of our disease, the market can’t take too many generics, or it will become saturated.”

Patients like Watson, meanwhile, have to navigate the market.

To keep costs down, Watson said, the digital apartment marketing company he founded typically evaluates its insurance options each year. Last year, the firm, RentVision, switched to Aetna, effective Jan. 1. Before making the switch, Watson asked his human relations manager to check to make sure that his drug would be covered. It was.

But after receiving the email from his pharmacy, Watson said, he went without the medication for about a month.

He began feeling like he did back in eighth grade, including struggling with fatigue. He has a wife and four young children — ages 9, 7 and 4-year-old twins — at home who depend on him. Doing without his medication wasn’t a long-term option.

On Feb. 11, Aetna Pharmacy Management sent a letter denying coverage for the medication, unless he could demonstrate that he met certain conditions — including being intolerant of another drug called penicillamine.

The medication coordinator who works with his doctor at the Nebraska Medical Center faxed a letter from his physician three days later requesting an urgent appeal.

In it, the physician noted that Watson is allergic to the other drug. “There is no way we can change him back to that medication,” he wrote.

In response to a request for comment from The World-Herald, an Aetna spokeswoman wrote in an email that the pharmacy was required to call to get approval for the medication when the claim for the drug was submitted.

The pharmacy never called, she wrote, so the claim was denied. That’s been updated so Watson can get his medication without any additional authorization, she wrote.

Watson said he understands why an insurance company would push back against such high prices. He’s a businessman. In addition to running his own company, he’s involved in two others.

Meanwhile, the health system had provided him with a month’s supply of the drug at no cost to tide him over.

“They know it’s this or nothing,” Watson said. “This or death is what your choices are.”

Family members even explored detouring to India during an overseas trip to buy the drugs at less cost.

But before they got to that step, drugmaker Bausch Health agreed to provide the drug at no cost for the rest of 2019 through a patient assistance program.

Judi Keller, executive director of the Wilson Disease Association, advocated on Watson’s behalf. According to the best available estimate, one in 30,000 people have the disease.

“Every case is a little unique,” she said, “so our patients need advocacy.”

Although Watson was eventually able to secure medication, his case illustrates how challenging insurance and the larger health system can be to navigate.

Watson wrote in a letter to Peterson outlining his story that he was willing to share it if it would “in any way advance helpful measures to improve this system.”

For his part, Watson said, his faith has kept him at peace with the situation. His wife and his mother, not so much. His next task will be to address what comes next.

“At the end of the year,” he said, “I’ll have to figure out what I’m going to do next year.”

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Julie Anderson is a medical reporter for The World-Herald. She covers health care and health care trends and developments, including hospitals, research and treatments. Follow her on Twitter @JulieAnderson41. Phone: 402-444-1066.

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