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Lincoln man's lifesaving medicine rings up at $102,296 a month when insurance denies claim

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.”

17 rare and unusual health stories out of Omaha

With presidential race in spotlight, House freshmen try to keep it local

Cindy Axne

DES MOINES — Rep. Cindy Axne's letter to Customs and Border Protection about African swine fever didn't make national news. But it did prompt a "thank you" from a man with the Iowa Pork Association as Axne flipped pork burgers this month at the Iowa State Fair.

Attention to issues like that disease, which could threaten the country's pork industry if it reached the U.S., is how first-term Democratic lawmakers like Axne are working to win reelection in 2020.

Axne and fellow Iowa Democratic Rep. Abby Finkenauer are trying to stay laser-focused on local issues to prevail in districts President Donald Trump carried in 2016. Two of the 43 Democrats who flipped GOP-held seats in 2018, the pair made history as the first women to represent Iowa in the House. But they aren't fixtures on cable news or in national headlines.

"I'm never going to be the person who's going to make a headline over a Twitter post," Finkenauer said in an interview at the fair. "But I'm going to be the person passing the bills and actually listening to my constituents and going back to Washington and making sure their voices are heard."

The challenge is making sure constituents hear about those bills and that advocacy, a task made more difficult when nearly two dozen Democratic presidential candidates are crisscrossing the state trying to get voters to caucus for them in February.

While Axne and Finkenauer got a shoutout from Minnesota Sen. Amy Klobuchar at the Des Moines Register's political soapbox during the State Fair, few of the other presidential contenders even men t i oned there were competitive congressional races.

But these are some of the seats that will determine which party controls the House in 2021. As a reminder of that, cardboard cutouts of the House members were featured at the Iowa Democratic Party's booth at the fair, a frequent stop for presidential contenders.

Finkenauer won Iowa's 1st District by 5 points in 2018, defeating GOP Rep. Rod Blum. Axne defeated GOP Rep. David Young by 2 points in the 3rd District. Along with electing Blum and Young in 2016, both districts backed Trump over Hillary Clinton. For 2020, Inside Elections with Nathan L. Gonzales rates the 1st District race "Tilts Democratic" and the 3rd District race a "Toss-Up."

Axne and Finkenauer are trying to prioritize local news coverage, particularly when they're traversing their districts.

Axne does regular interviews with local radio stations and visits each of the district's 16 counties each month, as Young did. She has also had to help her constituents navigate disaster relief after floods struck in March.

Finkenauer is hosting regular "conversations with your congresswoman" events and has tried to use her position as one of 18 freshmen who chair a subcommittee — hers is part of the Small Business Committee and focuses on rural development and agriculture — to highlight Iowans at hearings.

Finkenauer and Axne are gearing up for competitive campaigns themselves by raking in campaign donations. Finkenauer's campaign had $631,000 in cash on hand June 30, while Axne has $841,000, outpacing their potential GOP opponents.

GOP State Rep. Ashley Hinson, who is taking on Finkenauer, had $300,000 in her campaign account as of June 30. Young, who launched a rematch against Axne, had $342,000.

As the presidential race heats up, the Democratic freshmen will have to continue to remind voters and donors that their 2020 House races matter.

"I always want to encourage everybody that the Democratic House majority is literally the one holding our democracy together at this point, and nobody should ever take that for granted," Axne said in an interview at the fair.

In her announcement video, Hinson showed images of Finkenauer along with such liberal national figures as Vermont Sen. Bernie Sanders, House Speaker Nancy Pelosi, and Reps. Alexandria Ocasio-Cortez of New York and Ilhan Omar of Minnesota. Hinson said in an interview at the fair that Iowans want a lawmaker with a "common sense" approach.

Republicans think the presidential race will ultimately help in districts like these, with Trump bringing out his supporters. Both districts are a mix of suburban and rural areas and Trump won each by 3 points in 2016. Trump's presence on the ballot could also hurt Republicans in suburban areas, where they endured heavy losses in 2018.

Hinson acknowledged Republicans struggled in the suburbs in 2018 but argued she can win in those areas.

Young said congressional Republicans bore the brunt of frustrations with Trump in 2018, but he suggested those voters would support Republicans running for Congress in 2020.

"Now, those frustrations are still there. They can take that out on the president," Young said.

Although dissatisfaction with the president contributed to their 2018 victories, criticizing Trump is a tightrope walk for Axne and Finkenauer, because Trump won both of their districts.

Trump raises tariffs after lashing out at China, Powell
He 'orders' companies to look at leaving China, asks whether Fed chair or Xi Jinping is the 'bigger enemy'

WASHINGTON — President Donald Trump declared the head of the Federal Reserve an "enemy" and further escalated tariffs on Chinese goods Friday after Beijing earlier in the day announced retaliatory tariffs on U.S. products.

Capping a heady series of events that sent stock markets tumbling, Trump accused China of "politically motivated" tariff increases, which he labeled a mistake. Trump said that as of Oct. 1, he would ratchet up duties to 30% on $250 billion of Chinese imports now taxed at 25%. Furthermore, he said the 10% tariffs he planned on the remaining $300 billion of Chinese imports starting Sept. 1 would be raised to 15%.

Earlier, Trump lit into Jerome Powell, whom he appointed as chairman of the U.S. central bank in 2017, after Powell stopped short of committing tomakemore interest rate cuts.

"My only question is, who is our bigger enemy, Jay Powell or Chairman Xi?" Trump said on Twitter, comparing Powell with Chinese President Xi Jinping.

Trump also tweeted that he had "ordered" American companies "to immediately start looking for an alternative to China."

"We don't need China and, frankly, would be far better off without them," Trump tweeted.

The remarks combined with China's announcement of counter-tariffs marked a notable worsening of the trade dispute, which is increasingly weighing on U.S. and global economic growth.

Trump and his economic team have been increasingly concerned about the economy, which is weakening. The president has said he is considering tax cuts and other ways to bolster growth.

Analysts said that although Trump has often pulled back from impulsive threats in the past, the day's events had dashed remaining hopes for a near-term resolution to the trade conflict.

"I think it should be clear to everyone, both with the Chinese response and the way Trump reacted to it, that we're accelerating the downward slope in economic relations, and that will expand to political and other relations as well," said David Bachman, an expert on U.S.-China relations at the University of Washington.

Sensing the pivotal significance of Friday's events, the U.S. Chamber of Commerce said in a statement: "Time is of the essence. We do not want to see a further deterioration of U.S.-China relations. We urge the administration and the government of China to return to the negotiating table."

Other business leaders responded coldly to Trump's demand that they stop doing business with China.

"It is unrealistic for American retailers to move out of the world's second largest economy, as 95% of the world's consumers live outside our borders," said David French, senior vice president of government relations at the National Retail Federation. "Our presence in China allows us to reach Chinese customers and develop overseas markets. This, in turn, allows us to grow and expand opportunities for American workers, businesses and consumers."

Markets plunged immediately after Trump began his Twitter storm with the attack on Powell. All the major U.S. stock indexes ended sharply lower, with the Dow Jones industrial average falling 623 points, down 2.4% for the day. Government bond yields also sank, along with oil and other commodities.

"The other shoe keeps dropping on America's economic war with China, and as China and Trump ramp up the rhetoric and put on new tariffs, stock investors have had enough and want out," said Christopher Rupkey, chief economist at MUFG Union Bank in New York.

Powell, in a highly anticipated speech Friday morning at the Fed's annual conference in Jackson Hole, Wyoming, pledged to do whatever the Fed could to sustain U.S. economic growth. But the Fed, which made a small cut in a key interest rate last month, is divided on how aggressively it should respond in the face of economic crosscurrents that include strong domestic consumer spending and significant trade policy uncertainty.

Trump has demanded the Fed cut a full percentage point in its benchmark interest rate and take other steps to lower the value of the dollar to spur exports.

Not hearing the message he wanted, Trump tweeted Friday: "As usual, the Fed did NOTHING! It is incredible that they can 'speak' without knowing or asking what I am doing, which will be announced shortly. We have a very strong dollar and a very weak Fed. I will work 'brilliantly' with both, and the U.S. will do great."

Soon after, Trump went on to attack China, which had announced additional tariffs of 5% to 10% on $75 billion of U.S.-made goods, to take effect on Sept. 1 and Dec. 15 - the same dates that Trump's new tariffs on $300 billion of Chinese products are set to go into effect.

Beijing didn't identify what U.S. goods would face higher tariffs, saying only that they would affect a total of 5,078 products. In addition, China said it would resume imposing additional tariffs of up to 25% on U.S.-made vehicles and auto parts starting Dec. 15.

"We hope China and the United States will resolve differences in a manner acceptable to both sides on the premise of mutual respect, equality, good faith, and consistency of words and deeds," said a statement attributed to the Customs Tariff Commission of China's State Council.

China's state-run news agency reported the tariffs just before Powell's speech and as Trump was preparing to leave for the annual G-7 summit, where the leaders of Germany, Japan and five other advanced economies are meeting in France and where Trump is likely to feel heat on his trade policies.

"This probably amplifies the earful that the U.S. is going to get from the rest of the G-7 on how trade wars are dragging down the global economy," said David Loevinger, an analyst for TCW Emerging Markets Group in Los Angeles and a former senior Treasury Department official for China affairs.

Trump is banking on a strong U.S. economy to carry him to a victory in 2020, but he has become more strident about taking on China. In the past, he has described Xi as a great friend, but that, too, seemed to have ended Friday.

In a series of tweets, Trump lashed out at the Chinese: "Our Country has lost, stupidly, Trillions of Dollars with China over many years. They have stolen our Intellectual Property at a rate of Hundreds of Billions of Dollars a year, & they want to continue. I won't let that happen! We don't need China and, frankly, would be far better off without them.

"The vast amounts of money made and stolen by China from the United States, year after year, for decades, will and must STOP. Our great American companies are hereby ordered to immediately start looking for an alternative to China, including bringing your companies HOME and making your products in the USA."

Genealogist for Navy tracks down families of MIA sailors so they can bring them home

Ignoring the pain of walking in heels, Dee Dee King marched silently behind the horse-drawn carriage bearing the remains of Petty Officer 2nd Class Gerald Clayton.

It had been 77 years since Clayton, then 21, died aboard the USS Oklahoma at Pearl Harbor. King had no personal ties to Clayton or anyone else in his Nebraska hometown.

Still, the funeral July 5 in Central City was going to be hard. The grandmother from Texas — born 10 years after the Pearl Harbor attack — considered Clayton one of “her boys.”

“I knew I was going to lose it,” she said. “They played taps — I started crying.”

King works as a forensic genealogist for the Navy. Last month’s long-delayed burial service was the fruit of her research dating back to 2011, when she first contacted Clayton’s family.

“She’s been the driving force,” said Sheri Spomer, Clayton’s niece. “After the ceremony, she came and gave me a hug. She was crying. It was so emotional for her.”

King, 68, has worked under contract with the Navy since 2009, tracking down and collecting DNA samples from family members of missing Navy service members dating back as far as World War II. The work is not so different from what many hobbyists do when they research their own family trees, but forensic genealogists focus on cases with legal implications.

“For some people, it would be just a job,” said her husband, Rick, a Vietnam War veteran. “For her, it’s more of a calling.”

The trip from Houston to Nebraska also provided the Kings the opportunity to tour the Defense POW/MIA Accounting Agency laboratory at Offutt Air Force Base, where the remains of Clayton and many of the other veterans whose families King has worked with were identified.

Over the years, King said, she has contacted relatives of at least 1,200 MIA sailors — including at least 320 of the 389 who, like Clayton, were unaccounted-for after Japanese torpedoes sank the Oklahoma in the first minutes of the Dec. 7, 1941, attack. She estimated that she has talked with 2,000 to 3,000 family members of USS Oklahoma MIAs alone.

The battleship, with the bodies of most of its dead crew still inside, remained submerged until it was raised more than a year after the attack. Bones could not be identified, and remains were buried in graves marked “Unknown” at Hawaii cemeteries. An effort to identify remains after the war’s conclusion failed, and they were reburied at the National Memorial Cemetery of the Pacific in Honolulu.

Only in 2015 did the Defense Department decide to disinter and identify the lost, using modern DNA technology. So far well over 200 have been identified, most returned to hometowns to be buried next to loved ones.

“Almost everybody I talked to had stories,” King said during a recent interview in Omaha. “For most of them, I was the first person who had ever contacted them (about the Oklahoma).”

King’s job isn’t all that different from that of a detective or a news reporter. She scours the Internet and mines databases. She pleads for the release of records. She cold-calls people, and comforts them when they cry.

“You start casting a wide net, until you find something,” King said. “I’ve called people on Thanksgiving, I’ve called people on Christmas. I’ve stayed up until midnight.”

Born in a small town in the Texas Panhandle, King moved around the oil patch of Texas, Oklahoma and New Mexico because of her father’s job in the oil industry before her family settled in Southern California during her junior year in high school. In 1968, her then-boyfriend, Gary Haynes, deployed to Vietnam shortly after the Tet Offensive. Back home, she protested the war.

He earned an early ticket home from his one-year tour after being wounded three times.

The couple married and had two daughters. But King’s husband suffered badly from shrapnel wounds, ulcers and what she described as “horrible PTSD” in an era before treatment.

“He never got the attention he needed. Ever,” she said. They divorced a few years later.

A single mother living in Austin, Texas, she got a job tending bar. One day a long-haired, motorcycle-riding, Vietnam veteran named Rick King came in. Dee Dee described him as “the loudest, most obnoxious guy in the bar.” She threatened to throw him out.

“Six months later, we got married,” she said, laughing. Even their friends doubted the marriage would last. But Rick was kinder than he appeared during their first meeting, and Dee Dee’s daughters adored him.

For years, off and on, Dee Dee worked as a social worker. For both husband and wife, helping veterans became a passion. Dee Dee created and implemented a program for homeless veterans in their home county.

In the late 1990s, she became hooked on genealogy after receiving a computer program to organize family trees. She took some classes in genealogy, and a hobby became a job. She became a board-certified genealogist and started a one-woman firm called Forensic Genealogy Services LLC.

King took on cases for lawyers. She helped to start the Council for the Advancement of Forensic Genealogy, and developed classes to train others in forensic genealogy.

In 2009, a military contractor in Washington approached her about helping on a Navy contract bid to search for and obtain DNA samples from families of MIA service members. The contractors had no background in the field, but King did, and they wanted her to sign off on their investigations.

King was excited by the idea of helping to identify missing sailors. But she didn’t want to work for someone else.

So she downloaded the packet of bidding documents — more than 100 pages — and, with some help from her daughter, submitted her own contract offer. It was scary. She’d never done anything like this before. But she felt as if she had found what she was meant to do.

“Every night when I went to bed, I would say, ‘I’m going to get this contract. I know it. It’s mine,’ ” King said.

And after a wait that seemed to take forever, she won.

King brought an honest, homespun manner to the process. And a compassion for the families she reached.

“People started telling me stories. These were all people — all sons, fathers, brothers,” King said. “For that brother or sister that you call, it may have been 75 years. But it’s like it was yesterday.”

King starts with only basic personnel facts from the Navy. It’s the families who color in the background.

She remembers talking to the brother of one USS Oklahoma sailor who burst into tears as soon as she mentioned the sailor’s name.

The now elderly man said he had followed his brother around everywhere before he joined the Navy.

“I was just old enough to remember when my mother was notified he was killed,” the man told her. “Our family was never the same.”

The younger sister of another sailor, who came from a poor farm family in the Midwest, said her father had encouraged the boy to join the military to learn a trade. The father signed a permission slip so the son could enlist.

Then he was killed at Pearl Harbor.

“His mother never forgave his father,” King said. “She fell on the radio and clutched it when she heard the news.”

Some families prefer denial, she said. Some parents preferred to think their sons survived, and began a new life somewhere else.

“These families have PTSD,” she said.

Sometimes King places calls on the missing sailor’s birthday, or the anniversary of the day he went missing, hoping relatives will be thinking about their missing loved one.

Others are difficult to find. Some of the young men grew up in other countries where records are hard to trace, or were adopted or came from orphanages.

“You write to everybody you can find,” King said. “Sometimes you work and you work, and you can’t find a thing.”

While working on the Oklahoma project, though, she has found family for nearly every missing sailor.

At one time, the Navy resisted opening the graves of “unknowns” like those on the Oklahoma. But King never doubted it was the right thing to do.

“It either is ‘No man left behind,’ or it isn’t,” she said.

Hundreds of burials later — many of them joyous celebrations involving entire communities, like Gerald Clayton’s burial last month — she feels she’s been proven right.

“I know these guys want to come home,” King said. “They’re waiting.”

Photos: Pearl Harbor: Bringing home the unknowns