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Teen's diagnosis spurs insulin bill
Dad calls Fortenberry to say prices are 'not acceptable'; proposal aims to lower them by as much as two-thirds

TEKAMAH, Neb. — Rod Regalado wasn't expecting anything out of the ordinary when he took his then-13-year-old son, Matt, to the doctor for a sports physical.

Matt wanted to play basketball at Tekamah-Herman High School. The physical was routine.

But after that September visit, the doctor's office called. Matt's blood sugar levels were elevated. That triggered another test, followed by a call the next day advising Regalado to take his son to Children's Hospital & Medical Center in Omaha. Right away.

Matt stayed for three days. He was diagnosed with Type 1 diabetes, a condition in which the person's immune system attacks and destroys the insulin-producing cells in the pancreas.

The diagnosis and the high costs that go along with it were the catalyst for legislation offered last week by Rep. Jeff Fortenberry, R-Neb., that would limit the price of insulin for the roughly 7.5 million Americans who depend on insulin. That includes almost 1.6 million Americans who, like Matt, have Type 1 diabetes, according to the American Diabetes Association. The bill is co-sponsored by Rep. Angie Craig, D-Minn.

Before he could take his son home, Regalado had to buy insulin and other supplies at an estimated cost of $700.

"It was really spendy," he said. "But I didn't care. I would have given them everything just to get him out of there. I just wanted to get him home."

After a couple of weeks, Regalado began getting more bills — and questioning the prices. The cost of one type of insulin went up 20%; the other went down 10%. But none of it was cheap.

Regalado, an industrial compressor salesman used to dealing with pricing, called the pharmacy and his insurance company. Finally, he reached Fortenberry's office.

"I said, 'This is not acceptable. People are dying, and they're rationing this stuff,' " Regalado recalled.

So Fortenberry introduced Matt's Act, named for Matt Regalado.

Fortenberry said in a statement that the bill's intent is to cut the price of insulin by as much as twothirds by creating a new model for delivering the drug that provides substantial cost savings for all patients.

"Many see the costs of their lifesaving drugs go up and up and up," he said. "Patients skip their doses because they can't afford their insulin, and this can land them in the hospital. They deserve better."

Rising insulin costs have prompted congressional inquiries and public concern. That ramped up last year with the deaths of several young people who were reportedly rationing medication because they couldn't afford it.

Fortenberry isn't alone in wading into the issue of high insulin prices, not to mention high drug prices in general. The Trump administration has proposed a program that would cap copays for most people with Medicare at $35 a month. A Senate bill introduced last year takes aim at the complex mechanism behind insulin pricing, incentivizing reductions in list prices for the medications.

States have also taken on the issue. Last year, Colorado adopted a law placing a $100-a-month cap on insulin copays for insured patients. Similar legislation was introduced in more than 30 states this year, with more than eight enacting the caps. Legislatures in two more states have approved caps and are awaiting their governors' approval of the measures.

In Nebraska, two bills would cap out-of-pocket costs for many insured patients at $100 a month. State Sen. Kate Bolz of Lincoln, who is running against Fortenberry, introduced Legislative Bill 949. Sen. Justin Wayne of Omaha proposed LB 970.

A hearing on the bills in February drew testimony from a number of Nebraskans who have struggled with the medication's high price. One small-business owner told of twice ending up in an emergency room after trying to ration the drug. Even after marrying and getting on his wife's insurance, he still pays hundreds of dollars a month for the four types of insulin he needs to control his diabetes.

Bolz said her bill is not expected to advance during what's left of the legislative session, which restarted last week after suspending due to COVID-19.

Wayne said he's not sure that the Legislature will get to his bill, either. "If the federal government doesn't do anything, we'll pursue it again next year," he said. "It's not something I'm going to give up on."

Regalado said he prefers Matt's Act because the state caps don't apply to those who lack health insurance. Nor do they typically apply to the self-funded plans commonly provided by large employers.

"That's a huge distinction," he said of the bill's inclusion of the uninsured.

Essentially, Matt's Act would assure every patient access to insulin at the net price for the medication, plus a small fee for transportation and the pharmacist. The list price for insulin is often more than $300 a vial. Net price is more than 70% lower than the list price. That works out to an estimated $60 per vial, plus the small charge for distribution and dispensing for all patients. The uninsured may have to pay the full $300 or more for a vial of insulin if purchased directly at a pharmacy.

Under the bill, copays for those with insurance would be no more than $20, or zero for those with high-deductible plans.

An American Diabetes Association official told a congressional committee last year that insulin prices are causing patients' out-of-pocket costs to rise and creating a financial burden for many who need insulin to survive. Indeed, people with diabetes have medical expenses 2.3 times higher than those without diabetes, according to the federal Centers for Disease Control and Prevention.

A number of studies have documented the increasing cost of the medication. The average price of insulin almost tripled between 2002 and 2013, according to a 2016 study published in the Journal of the American Medical Association. A March 2019 memo from the House Energy and Commerce Committee indicated that prices have continued to climb, almost doubling between 2012 and 2016.

Regalado said he feels fortunate. He has a good job and good insurance. But he worries about Matt, his long-term health and the impact the costs that comewith his condition will have on his future.

"He's married to this forever," Regalado said.

After the teen returned home, the family worked to deal with their new routines — finger pricks nine times a day to check blood sugar levels, counting carbohydrates to determine how much insulin Matt would need. They tracked them on a whiteboard on the refrigerator.

"At first, you're just scared," Regalado said. "You're terrified."

Addisen, Matt's older sister, said managing Matt's diabetes became a family project. They even packed his lunches.

"We're a team, so we do everything together," she said.

Matt, now 14, uses two types of insulin, a short-acting version after eating and drinking and a long-acting type that helps even out his blood sugar. He also uses a continuous glucose monitoring system that sends alerts to the family's smartphones.

"It's a lot to handle," Matt said. "It's a lot more on the plate right now."

Regalado, meanwhile, is in the process of setting up a website and a nonprofit organization structured to allow him to lobby for the bill. On his mind are all the other Americans living with diabetes.

"In my view," he said, "we're not just doing this for Matthew."

julie.anderson@owh.com, 402-444-1066 twitter.com/julieanderson41


Articles
Experts grasp for clues amid virus's silent spread
Scientists focus on role of asymptomatic carriers in transmitting disease that has proved hard to control

One of the great mysteries of the coronavirus is how quickly it rocketed around the world.

It first flared in central China and, within three months, was on every continent but Antarctica, shutting down daily life for millions. Behind the rapid spread was something that initially caught scientists off guard, baffled health authorities and undermined early containment efforts — the virus could be spread by seemingly healthy people.

As workers return to offices, children prepare to return to schools and those desperate for normalcy again visit malls and restaurants, the emerging science points to a menacing reality: If people who appear healthy can transmit the illness, it may be impossible to contain.

"It can be a killer, and then 40% of people don't even know they have it," said Dr. Eric Topol, head of Scripps Research Translational Institute. "We have to get out of the denial mode because it's real."

Researchers have exposed the frightening likelihood of silent spread of the virus by asymptomatic and presymptomatic carriers. But how major a role seemingly healthy people play in swelling the ranks of those infected remains unanswered — and at the top of the scientific agenda.

The small but mighty coronavirus can unlock a human cell, set up shop and mass produce tens of thousands of copies of itself in a single day. Virus levels skyrocket before the first cough, if one ever arrives. And astonishing to scientists, an estimated 4 in 10 infected people don't ever have symptoms.

"For control, to actually keep the virus from coming back, we're going to have to deal with this issue," said Rein Houben, a disease tracker at the London School of Hygiene and Tropical Medicine.

The dire toll of more than 640,000 worldwide deaths from the coronavirus has faded to the background as cities lift restrictions. But the slyness of the virus remains on the minds of many scientists, who are watching societies reopen, wondering what happens if silent spreaders aren't detected until it's too late.

Travelers with no coughs can slip past airport screening. Workers without fevers won't be caught by temperature checks. People who don't feel tired and achy will attend business meetings.

And outbreaks could begin a new.

THE FIRST HINTS

As early as January, there were signs that people could harbor the virus without showing symptoms. A 10-year-old boy in China who traveled to Wuhan had no symptoms but tested positive along with six others in his family who had coughs and fevers. More troubling was a report out of Germany: A business traveler from China spread the virus to colleagues in Munich, even though she appeared healthy.

Still, many scientists remained unconvinced. Some questioned whether the Chinese businesswoman truly didn't have symptoms. They suggested that she might have had mild ones she attributed to jet lag.

The concept of people unwittingly spreading disease has never been an easy one to grasp, from the polio epidemic of midcentury America to the spread of HIV decades later.

At the turn of the 20th century, a seemingly healthy New York cook named Mary Mallon left a deadly trail of typhoid infections that captivated the public and led to her being forced into quarantine on an East River island. "Typhoid Mary" remains a haunting symbol of silent spread.

As COVID-19 emerged, health officials thought that it would be like other coronaviruses and that people were most infectious when showing symptoms like cough and fever, with transmission rare otherwise.

"We were thinking this thing is going to look like SARS: a long incubation period and no transmission during the incubation period," said Lauren Ancel Meyers, a disease modeler at the University of Texas at Austin.

At U.S. airports around the country, travelers returning from hot spots who didn't have symptoms were allowed to go on their way.

"We were reassuring ourselves and the public that contact with an asymptomatic person was not a risk," said Dr. Jeff Duchin of King County, Washington, where the first major cluster of coronavirus cases in the nation broke out at a Life Care nursing home.

Behind the scenes, scientists like Meyers were sharing their alarming finding with health officials.

Meyers had assembled a team of students who scoured websites of Chinese health departments looking for dates of symptom onset in situations in which there was enough information to figure out who infected whom.

Between Jan. 21 and Feb. 8, they found several cases in which the person who brought the virus home didn't develop symptoms until after infecting a family member. For example, a woman in a Chinese city with few cases got sick after her husband returned from a trip to a city with a large outbreak. He didn't get sick until later.

"When we looked at the data, we said, 'Oh no, this can't be true,' " Meyers said. "It was shocking."

Finding more than 50 such cases, Meyers immediately shared the analysis with the U.S. Centers for Disease Control and Prevention — on Feb. 20 at precisely 1:18 a.m., according to her records. The agency responded a few hours later with questions.

Meyers and the CDC exchanged extensive emails, going over what could be behind the numbers. Was the virus really spreading that fast and before people felt sick?

SPREAD AT A COCKTAIL PARTY

Rebecca Frasure, who contracted the virus while aboard the Diamond Princess cruise, sat in bed in Japan in late February, frustrated to be kept hospitalized even though she didn't have any symptoms.

"I'm perfectly healthy except having this virus in my body," Frasure said while waiting for her release.

Without widespread and frequent testing, it's impossible to know how many people without symptoms might carry it. The Diamond Princess, which idled in the Port of Yokohama, Japan, while the virus exploded onboard, enticed researchers.

After an ill passenger tested positive, only those with symptoms initially got tests.

Houben and his London research team set out to build a mathematical model to estimate how many infected people without symptoms were being missed. After four weeks, their model indicated that a startling three-quarters of infected people on the Princess were asymptomatic.

Could that really be right? At first, the researchers worried that they might have done something wrong. They continued fine-tuning the model, directing a postgraduate student to look for errors.

"Check for this, check for that," Houben said. "That wasn't it. That wasn't it. That wasn't it."

They spent weeks making sure that it was foolproof. It indeed was right.

They had their answer: Asymptomatic carriers "may contribute substantially to transmission."

In Washington state, similar clues emerged for Duchin as a team of investigators probed the Life Care outbreak and found that health care workers were spreading the virus to other elder care facilities. They thought that at least some of them were working while infected but before feeling symptoms.

Then in March, at another nursing home, more than half the residents who tested positive didn't have symptoms, though most would go on to develop them.

"This disease is going to be extremely hard to control," Duchin recalled thinking.

That underscored the need to shift gears and acknowledge that the virus couldn't be totally stopped.

About the same time, Washington state officials had become aware of a cocktail party at a Seattle apartment where about 40% of the guests they later interviewed became sick with the virus, even though nobody seemed sick at the time.

Elizabeth Schneider, who was among the 30 or so attendees, recalled it as a low-key evening themed around a coconut-lime cocktail, with some guests getting in the spirit with Hawaiian shirts or other tropical attire. The host had hired a bartender to serve drinks and keep an eye on the food.

"We never really figured out who it was at the party," said Schneider, who fell ill three days later, after continuing to socialize through the weekend. "I definitely could've spread it."

That same week, Kenneth Hunt fell ill and was hospitalized with the virus. His friend and neighbor, Jessie Cornwell, thought back to how she had watched the Democratic debates with Hunt at Ida Culver House, their assisted living facility in Seattle, and how they had eaten meals together in the dining room.

Not long after, a second resident — who, like Hunt and Cornwell, lived on Culver House's second floor — also became sick and went to the hospital, prompting the facility to beg health officials to test all residents and staff.

Hunt died March 9, becoming one of the first American casualties of COVID-19. A day later, 82-year-old Cornwell tested positive, along with two other residents, all of whom were put into isolation.

None of them showed any symptoms.

Elsewhere, as testing efforts have widened, huge proportions of asymptomatic people have shown up, from a neighborhood in San Francisco to an aircraft carrier in the Pacific.

In an outbreak linked to a South Korean nightclub, more than 30% of cases were asymptomatic. At one New York maternity ward, about 88% of those who tested positive had no symptoms.

When Cornwell learned that she was positive, her thoughts immediately turned to her pastor, the Rev. Jane Pauw, who had driven her to a Bible study. Pauw lost her sense of taste and smell, came downwith a high fever and was out of breath after walking a few steps. Cornwell wondered if she could have been the one to infect Pauw. She alerted her pastor, who made calls to clinics until she found one that would give her a virus test.

It came back with the answer she feared: She was positive, too.

UNANSWERED QUESTIONS

The nose and mouth are convenient entryways for the coronavirus. Once inside, the virus commandeers the cell's machinery to copy itself, while fending off the body's immune defenses. Virus levels skyrocket in the upper airway, all without symptoms in the early days of an infection. Many scientists think that during these days, people can spread virus by talking, breathing, singing or touching surfaces.

In the truly asymptomatic, the immune system wins the battle before they ever feel sick.

As it became clearer that healthy people could spread the virus, U.S. health authorities opted not to wait for scientific certainty. During a meeting in early March, top U.S. health officials said they thought that transmission could be occurring before people displayed symptoms, according to an email obtained by the Associated Press. A few weeks later, the CDC recommended that people cover their nose and mouth in public with masks, bandannas or even T-shirts.

Days later, Chinese researchers published a paper saying patients are most infectious two to three days before developing symptoms. Evidence continues to accumulate, and the CDC now estimates that 40% of transmission is occurring before people feel sick. The agency is telling public health officials in states that rely on mathematical models to use that number in their calculations.

A small Chinese study published May 27 found that infected patients without symptoms shed virus, on average, for fewer days than those with symptoms: nine days versus 15 days. But they do shed virus.

Still, doubts remain among scientists, most notably among the World Health Organization, which has discounted the importance of asymptomatic infection. For months, WHO maintained that asymptomatic spread was not a driver of the pandemic but recently began to acknowledge the possibility and advised people to wear masks.

U.S. health officials blame China for delays in sharing information on silent spread. But Topol contends that the U.S. could have mounted its own testing program with viral genome sequencing.

That's no small matter: Gaining scientific clarity earlier would have saved lives.

"We've been slow on everything in the United States," Topol said. "And I have to say it's shameful."


Local
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The only certain thing for restaurants, in Omaha and elsewhere, is uncertainty

Jack and Mary’s restaurant, known for its fried chicken, occupies more than 8,000 square feet in a strip mall near 114th Street and West Dodge Road. It’s one of the larger dining rooms in Omaha.

Last year, the 45-year-old eatery averaged 2,200 diners per week, keeping more than 30 employees busy and putting all that space to good use, said owner Kip Oetter.

But these days, he faces the possibility of permanently closing as the coronavirus pandemic persists.

“With what’s going on now, I’m lucky if I have 200 people in the door each week,” he said. “We have a lot of square footage, and our lease is expensive.”

His revenue is down $400,000 from this time last year.

The demise of iconic Omaha restaurants such as the Flatiron Cafe and the 100-year-old Dundee Dell underlies the uncertainty and angst Oetter and his fellow restaurateurs face each day.

Nationwide, 60% of the restaurants that have shut down since March have closed permanently, according to a Yelp.com report released Wednesday. Roughly 26,000 restaurants were closed at some point, and almost 16,000 won’t reopen.

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The uncertain climate raises a number of questions for restaurant operators: Will they have enough revenue to survive? How do they come up with new ways to lure customers? Can they maintain sanitation regimes that were always important but now are more strict and crucial than ever?

While nobody can definitively answer those questions, a few things have become apparent among industry insiders and restaurant owners: It won’t get better for some time; many of the changes that they’ve made, such as stricter sanitation and increased reliance on takeout, will remain after the coronavirus; and those who survive probably not only will be financially savvy but innovators as well.

Nebraska Restaurant Association Executive Director Zoe Olson is particularly worried.

“There is so much uncertainty in what’s happening daily. We are starting to see cases tick up again,” she said. “That is reducing consumer confidence. People are fearful.”

Dining rooms are drawing between 40% and 50% of capacity, Olson said.

“Crowds are terrible,” said Oetter of Jack and Mary’s.

Olson said she’s hearing that from her members as well.

“I haven’t heard of a restaurant yet that is serving at 100%, even if their dining rooms are fully open,” she said.

ANNA REED/THE WORLD-HERALD 

Lynne and Dean Jessick of Omaha have their temperatures checked before being seated at Le Voltaire.

Some report numbers that are more encouraging. At Jerico’s, a 40-year-old steakhouse near 114th and West Dodge with a fully open dining room, crowds are 60% to 70% of what they were before the pandemic, said owner Chuck DiDonato.

Chef and owner Anthony Kueper of Dolce near 120th Street and West Maple Road says his fine-dining restaurant has been full on some weekdays and may experience its best July financially since he bought it three years ago, even though he still isn’t using all of his tables.

Though Gov. Pete Ricketts allowed restaurants to operate at full capacity starting June 22, a number of restaurants, including Dolce, continue to limit patrons and keep a 6-foot distance between tables.

Chef Cedric Fichepain, who operates the European restaurant Le Voltaire in west Omaha, does that and more. He applies the same art to his safety protocol that he does to his food.

He created a video for his website to let diners know what to expect: You sanitize your hands and take your temperature when you arrive. You must wear a mask while walking to your table and anytime you get up. Staffers wear masks as well. Pitchers on tables replace waiters refilling water glasses. Silverware and other items aren’t placed on tables until diners are seated.

It’s as much for his staff as it is for his customers, Fichepain said, and many patrons are pleased.

“We try to control exposure as much as possible,” he said. “Everything is reopening too fast.”

Other restaurants have similar routines, sans the thermometer.

Dolce now uses disposable paper menus and also puts menus online so people can browse them on their phones, making ordering totally touchless.

ANNA REED/THE WORLD-HERALD 

Nic Henke, general manager, cleans a menu at Le Voltaire.

In addition to making it safer, Kueper said, it also makes it easier to update what’s offered. He thinks that he will keep using the paper and online menus after the pandemic is over.

But some restaurants are relaxing their mask policies.

Most staff members at Jerico’s indicated that they really didn’t like wearing masks because they were hot and diners were having trouble hearing them, DiDonato said.

So the restaurant discontinued them for the most part, with little pushback from patrons.

“The way I look at it, it’s the diner’s choice to assume the risk,” he said, though with the recent uptick of coronavirus cases in Douglas County, he’s rethinking his decision.

The Douglas County Health Department resumed restaurant inspections three weeks ago, said Joe Gaube, supervisor of food safety and compliance. Since then, eight inspectors have conducted between 100 and 120 site visits. Most restaurants they visited were following the state’s pandemic guidelines, Gaube said.

But he said he’s been getting multiple calls from people complaining that when they go out to eat, workers aren’t masked.

“They’re surprised that it’s only a recommendation and not mandatory. I tell them, ‘I encourage you to use your money as your power.’ You can voice your concerns to management, but the best way to show them you disagree is to eat elsewhere,” he said.

On Monday, the Douglas County Board of Health will consider imposing a mask requirement in Omaha and the rest of the county.

Some restaurants haven’t opened dining rooms at all, instead relying on takeout business to carry them through.

In some cases, the number of diners they’re seeing doesn’t justify adding the staff necessary for dine-in service.

“Our dining room is pretty small, so we decided it was too close for comfort,” said Tony Constantino, who, with his wife, owns Mangia Italiana near Interstate 680 and Irvington Road. He tentatively plans to reopen the dining room next month.

His business is down about 30%, but takeout has always accounted for 52% of his revenue. Catering, which has all but dried up, makes up another 30%. His eight-person patio is open for diners who don’t mind disposable plates, cups and utensils.

Because takeout is such a large part of his business, Constantino hasn’t had to try new ways to drum up business. In fact, he decided against launching a fried appetizer menu developed before the pandemic because fried foods don’t travel well.

ANNA REED/THE WORLD-HERALD 

Elizabeth Czopkiewicz shows the specials board to Lynne and Dean Jessick. The couple were celebrating their 37th wedding anniversary with dinner at Le Voltaire this week.

But other chefs, such as Kitchen Table’s Colin Duggan, have supplemented their menus with “general store” items. In his case, house-made bread, tortillas, enchilada sauce and hummus.

Dario Schicke, who operates Avoli Osteria and Dario’s in Dundee, said he sold family meal kits with house-made pasta and sauces and cooked unusual entrees to use up surplus stock when he closed his dining rooms. At one point, his European bistro was offering banh mi sandwiches and tacos.

And now that the dining rooms are operating again, he created a new by-the-slice Roman pizza at Avoli that has proved popular.

Such things are good marketing strategies and add to the bottom line but usually don’t significantly make up for unprecedented lost revenue.

Duggan said he is doing only 30% to 40% of the business he saw before the pandemic.

Being downtown dealt him a double whammy, he said: His lunch business went away when office workers went home, and his hope for a good summer was quashed when the College World Series, the Olympic Swim Trials and the Major League Baseball draft were canceled.

Each chef, owner and industry insider knows that more restaurants will become coronavirus casualties, but most say they’re doing everything they can to stay afloat.

Duggan said he and his wife and co-owner, Jessica, haven’t seriously discussed closing. They live in the building where the restaurant is located.

“This is our dream. We are doing everything we can to stick with it,” he said. “We have to reinvent ourselves weekly, if not daily. We are trying to find ways to keep people busy and bring people in.”

They have also prepared meals for about 3,000 food-insecure Omahans over the past few months.

Many restaurant owners have participated in the Payroll Protection Program and are working with understanding landlords on rent breaks or delays.

Oetter, of Jack and Mary’s, said rent and utilities are more than $10,000 a month. He said he has been transparent with his landlord about his financial situation and plans to sit down with him in a couple of months to hash out a solution to keep the restaurant in its long-term space. He doesn’t have the liquid cash to move to a smaller location.

He has applied for a small business loan, something he finds frustrating because his family has owned Jack and Mary’s loan-free for 10 years.

“We didn’t make any bad business decisions,” he said. “We didn’t do anything wrong.”

Schicke said he has survived other notable crises, and vowed to survive this one, even though it could possibly be the toughest to overcome.

“I left Sarajevo because of war. We were in New York, in downtown Manhattan running our own business, on 9/11. This is a whole different (thing). You don’t see an end, don’t see how it’s gonna play out,” he said. “We are going to do whatever we can, but after that, it’s out of our control.”

Olson, of the Nebraska Restaurant Association, will do all she can as well. Prompted by a board member who is alarmed at the lack of masks when he dines out, she plans to facilitate discussions on masks among association members. She said that they are important to the recovery of the industry and that the industry is important to Nebraska.

“We can’t do this forever,” she said. “Restaurants are the second-largest employer in Nebraska and normally have (yearly) sales averaging $3.4 billion a year.”

No matter what you think about masks, she said, there’s a fair chance that they may be part of the solution.

“It behooves all of us who want to maintain our standard of living to do the simple thing: Wear a mask so we can get this thing down to where we can contain it and get on with our lives,” she said.


Here are the city's 37 essential restaurants

Omaha Dines: Here are the city's 37 essential restaurants