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'Whatever it costs, I have to pay it:' As insulin prices spike, patients push for legislation

Like roughly 7.4 million other Americans, Matt Mason relies on insulin — to stay alive, first off, and to remain healthy and live a longer life.

He’s got a lot to do. A married father of two young girls, he’s the executive director of the Nebraska Writer’s Collective, a nonprofit that supports writing and writing skills at schools, businesses and detention facilities throughout the Midwest. In January, Mason began a five-year term as Nebraska’s state poet.

“I have to be here, and I have to be healthy for my kids, for my wife and for the nonprofit I run,” he said.

So last week, Mason encouraged his Facebook followers to contact Nebraska’s U.S. senators and voice their support for a bill introduced in the Senate that would take steps to reduce the price of insulin for himself and millions of others.

Rising costs for the life-saving medication have prompted congressional inquiries and public concern, which has ramped up in recent months with the deaths of several young people who were reportedly rationing medication because they couldn’t afford it.

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Colorado recently adopted a law placing a $100-a-month cap on insulin copays for insured patients. Wisconsin lawmakers introduced a similar measure last week.

In Nebraska, State Sen. Sue Crawford of Bellevue has taken an interest in the issue and is exploring possible legislation but has not determined what a bill might look like.

Mason’s medications are covered by insurance and a discount program offered by one manufacturer. He estimated that he pays about $280 a month after insurance and the discount. It’s a lot of money, he said, but he feels lucky because he sees stories of people paying $400 or $500.

“Whatever it costs, I have to pay it,” he said. “I can’t not pay it.”

Mason, 50, uses newer types of insulin, which are more effective than the versions available when he was diagnosed with Type 1 diabetes at age 24. He uses both a short-acting version after meals and a longer-acting one that works for 24 hours and helps keep his blood sugar steady.

JEFF BEIERMANN/THE WORLD-HERALD 

Matt Mason

“Those would keep me alive,” he said of the older versions, “but the newer ones will help me live a longer, healthier life.”

He said he understands that drug companies need to make profits — or they will disappear, and nobody will get insulin. “But they’re not finding the right balance between gouging and fair prices,” he said.

Insulin prices, of course, have not been the only target of drug price reduction efforts. The Senate Insulin Price Reduction Act comes amid a number of proposals aimed at lowering drug prices and increasing price transparency both in Washington, D.C., and state capitols. Rising drug prices was also one of the topics discussed last month in Omaha at a regional conference on health care costs organized by Nebraska Attorney General Doug Peterson.

Sen. Chuck Grassley, R-Iowa, co-sponsored a broad bipartisan bill aimed at lowering prescription drug prices. The Senate Finance Committee, which Grassley chairs, voted Thursday to advance the measure. The bill would, among other things, add out-of-pocket maximums for Medicare beneficiaries and penalize drug companies if their prices rise faster than inflation.

That measure, according to the Washington Post, faces stiff opposition from the pharmaceutical industry and conservative groups. But the White House has endorsed it. President Donald Trump has made lowering drug prices a top priority heading into his 2020 reelection campaign.

An American Diabetes Association official told a congressional committee in April that insulin price increases are causing patients’ out-of-pocket costs to rise and creating a financial burden for many who need insulin to survive. That includes people like Mason with Type 1 diabetes and some with Type 2 diabetes.

The average price of insulin almost tripled between 2002 and 2013, according to a 2016 study published in JAMA. A March memo from the House Energy and Commerce Committee indicated that prices have continued to climb, almost doubling between 2012 and 2016.

The price reduction proposal would address the complex mechanism behind insulin pricing, incentivizing reductions in list prices for the medications. The bill, which would affect people with private insurance and Medicare drug coverage, would also cover insulin outside the deductible to prevent spikes in costs at the beginning of the year.

Sen. Deb Fischer, R-Neb., has been supportive of Type 1 diabetes research and is reviewing the proposed pricing legislation, a spokeswoman said.

Mason said he’s heard some concerns from people who feel that the measure won’t do enough. But he believes that it’s a good step.

“The fact that the Senate is looking to do something is extremely encouraging,” he said.

Dr. Claire Baker, a board-certified endocrinologist at Diabetes & Endocrine Associates in Omaha, said rising costs are a particular burden for people with no insurance and for those with high-deductible health insurance plans, which have become more common.

It also hits people on Medicare, whose share of what they pay for drugs goes up when they reach a gap in the program’s drug coverage. She’s had to switch some patients to older insulins to get them through. While drugmakers all offer assistance programs, each requires patients to meet different requirements to qualify, typically based on income.

The need to address costs, meanwhile, leaves less time during office visits to talk about managing the disease.

“We talk about cost practically every day with somebody,” she said. “It’s a huge problem.”

17 rare and unusual health stories out of Omaha

Momaha
Pampers introduces internet-connected diapers

Pampers is the latest company to jump into trendy, wearable devices with a new “connected care system” called Lumi that tracks babies’ activity through a sensor that attaches to diapers.

The sensor sends an alert to an app notification when a diaper is wet. It also sends information on the baby’s sleep and wake times and allows parents to manually track additional info, like dirty diapers and feeding times. A video monitor is included with the system and is integrated into the app. Pampers didn’t say how much the system, which is being introduced in the U.S. this fall, will cost.

The announcement Thursday from Pampers, which is part of Procter & Gamble, is a sign of the growth in the “baby tech” industry. The Internet of things, or IoT, has invaded homes, promising to make routines and tasks more efficient. Companies have launched connected bassinets, smart night lights and pacifiers, bottles that track feedings and even apps to replicate the sound of a parent saying, “Shush.” A Research and Markets report predicts that the interactive baby monitor market alone will reach more than $2.5 billion by 2024.

But with the increase in “smart” options for babies and younger children, too, parents must make decisions about how much tech to use as they seek to raise them in an increasingly connected world.

“Even an infant or a toddler deserves a little privacy,” said Julie Lythcott-Haims, author of bestselling book “How to Raise an Adult.”

From smart diapers to social media, today’s parents are grappling with an ever-expanding crop of privacy concerns triggered by widespread connectivity of devices. Posting photos, tracking their development in an app or even searching for information on their health conditions can help big tech develop digital profiles that could follow those children for the rest of their lives.

In many cases, it’s still unclear how data for children’s connected devices is used and how secure it is. Take baby monitors and security cameras: There are dozens of examples of baby or child monitors being hacked or otherwise compromised, including an incident reported by the Washington Post earlier this year in which a Nest Cam installed in a child’s room began playing pornography.

Lythcott-Haims said parents should proceed carefully when evaluating data-collecting mechanisms for use on their children, even in the earliest stages of life. Tracking a baby too closely could also quickly morph into helicopter parenting.

“When does tracking every move become inappropriate surveillance?” Lythcott-Haims asked. “If we can track their diapers, we can track their Pull-Ups, then we can put trackers on their clothing. Pretty soon we don’t have to worry because we’ll know everything from before birth to end of their lives.”

The Lumi system encrypts all data and uses “the same standard of security as the financial services industry,” said Pampers spokeswoman Mandy Treeby. The system does not currently include two-factor authentication, something security experts consider key to avoiding unauthorized access to systems.

The goal of the system is to alleviate stress for new parents, and feedback from those testing the system has so far been positive, Treeby added.

Lumi isn’t the first jaunt into high-tech diapers. In 2016, Google’s parent company Alphabet filed a patent for “a diaper sensor for detecting and differentiating feces and urine.” Last year, Huggies partnered with Korean company Monit to launch a smart diaper sensor in Korea and Japan.

The risk with so many ordinary objects becoming “smart” is that it makes them dependent on software updates and subject to malfunctions — or a product losing its connectivity if a company goes out of business or discontinues the line. Nike’s $350 self-lacing shoes. for example, stopped lacing earlier this year because of a software update.


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Experts question whether the Huskers' swim team expansion gave a true varsity experience to walk-ons

LINCOLN — Both nerves and excitement were running high when University of Nebraska-Lincoln swimmer Alex Ellis prepared to dive in last fall for her first college swim meet. 

But Ellis and eight other new Husker walk-ons felt a somewhat different emotion when a video introducing the team flashed on the poolside screen. While the school's scholarship swimmers were individually featured in the showy pump-up video, there was no mention of the walk-ons at all. 

"We were confused about that," Ellis said.

Indeed, in that and several other ways, the Huskers' new walk-ons last year weren't always treated as true members of the Husker swimming and diving team. Nonetheless, Ellis much enjoyed and appreciated the chance she was given to continue swimming in college, work on her skills and bond with teammates.

The expansion of Nebraska's women's swim team last year was actually undertaken with football in mind — UNL athletic administrators intending to allow coach Scott Frost to expand his roster while keeping the school in compliance with the Title IX federal gender equity law.

But a World-Herald examination of the details behind the move show it didn't always go all that swimmingly, raising questions about how committed the school was to creating true varsity athletic experiences for more women.

The walk-ons practiced separately from the rest of the team.

Their skill levels were well below that of typical Husker swimmers, none having been standout swimmers at the high school level.  

And after swimming the first three meets of the season, the walk-ons were done. They no longer practiced as a team or received coaching, even though the college swim season continued on for four months.

All of those are indicators the swimmers were not really part of the team, said Kristen Galles, a Washington, D.C.-area attorney who has litigated Title IX cases. If Nebraska had a real commitment to athletic equity for women, she said, it would start a new women's sport rather than pad a roster with extra athletes who likely will never contribute to the success of the team.

"If the new football coach really wants 20 more men to help his team, then UNL should add a proportional number of women's opportunities through new sports," Galles said. "Padding existing women's teams harms rather than helps those teams."

But Nebraska swimming and diving coach Pablo Morales and Husker athletic officials defended the implementation of the new walk-on program.

"We feel the swimming walk-on program was handled appropriately, and we look forward to continuing to grow and enhance the program," the athletic department said in a written statement.

Scott Frost got a bigger football roster. But did Nebraska shortchange women’s sports to do it?

If there were any problems with the new swimming walk-on program, the school will soon get a another chance to implement a women's roster expansion. Nebraska plans to add a half-dozen women to the cross country team this fall, a move that will pave the way to further expand the football roster toward a 155-player goal.

"This is a great athletic university, and if can help that out or in some ways help another sport, I'm going to try to do that," said Husker cross country coach David Harris.

But Harris also believes the athletes he's adding could in the long run make his team more competitive as it seeks to move up in the Big Ten Conference standings. A current Husker male walk-on has developed into one of the best runners in the conference.

"I get surprised and pleasantly surprised by some," Harris said. "You never know who has the discipline and makeup to be a Division I runner." 

* * *

ALLYSSA HYNES 

The walk-ons and scholarship swimmers cheered for each other, and when they got out of the water they hugged and offered each other praise and encouragement for dropping their times. "In those moments, you did feel like a full team," walk-on swimmer Alex Ellis said. "It's not the walk-on team and the varsity team."

When Frost came in as Nebraska football coach in December 2017, he expressed a desire to bring back to the program more of the motivated walk-ons who had long been integral to Husker success.

When Frost quarterbacked Nebraska's 1997 national championship team, that squad featured 188 players. The Husker team he inherited as coach had only 129. 

Athletic Director Bill Moos considered Frost's desire for a larger roster, but also had to balance that against the school's obligations under Title IX. Under the landmark 1972 gender equity law, the school is required to provide equitable athletic opportunities for women. 

Moos considered adding a new women's sport. But in the end, he decided to make way for Frost to add about two dozen football walk-ons by adding a dozen women's swimmers during Frost's first season, and then to eventually bring on a roughly equal number of women's cross country runners. 

Such roster juggling, known as roster management, has become a common tool for schools to seek to stay in compliance with Title IX while keeping within athletic budgets.

But women's sports advocates say the practice also can be abused. If women's teams become unusually large or lesser female athletes are recruited to simply pad rosters, it then becomes more of a means to avoid adding a new women's sport, denying women a truly meaningful college athletic opportunity. 

“There are a lot of games played when you talk about how to balance the numbers,” said Sarah Axelson of the Women's Sports Foundation. “You don’t want to see rosters so inflated you have no chance of playing. You need to pause for a second and ask what you're doing to the quality of the experience.”

WOMEN'S SPORTS FOUNDATION 

Sarah Axelson

With the swim roster expanded by 12 athletes last year — including the nine walk-ons — UNL's swimming squad size hit 43.

That made it one of the largest in college swimming. The average Division I roster is only 29.6. Of the nearly 200 Division I schools sponsoring the sport, only four in 2018 had larger teams, the biggest being Florida State and Wyoming with 45 each. 

Similarly, the Husker women's cross country team this fall figures to have about 26 women, considerably larger than the Division I average of 17. Ultimately, Husker athletic officials have talked of taking the cross country roster as high as 30.

With any team or sport, there are limited numbers of athletes who can actually compete in most games or meets. Adding too many athletes takes away coaching time and can alter the internal dynamics of a team, Axelson said. 

Galles said when schools choose to pad rosters, it also denies women opportunities for the scholarships that would come with adding a new women's sport. And women's coaches don't really want to be forced to add athletes who in the end won't help their team win, she said.

Kristen Galles

"It's a policy choice based on sex that harms women and women's teams," Galles said. 

Morales, the former Olympic champion swimmer who has coached at Nebraska for 18 years, declined to be interviewed about the swim roster expansion. But he and the athletic department did provide written answers to questions posed by The World-Herald.

Morales said the new walk-on program was initiated not only to satisfy the minimum roster number he was required to meet, "but also to provide a collegiate swimming opportunity for young women who may not have otherwise had the opportunity." And he said he welcomed the chance to provide the women that chance. 

"The walk-ons have the same value to our program as any member of our team," Morales said.

The walk-on swimmers added were not recruited to campus as swimmers, but culled from students who were already at UNL or planning to attend as freshmen in the fall. As a result, they didn't come in with the state championship credentials of typical Husker swimmers.  

UNIVERSITY OF NEBRASKA-LINCOLN 

Pablo Morales

Only two of the nine had ever placed individually in a state high school meet, one for 9th place, the other 12th. Three of the walk-ons were upper-classmen who had been out of competitive swimming a year or more. 

It appears Morales had limited time to find the swimmers, as the roster-boosting plan was initiated only months before the start of the 2018-19 school year. "My only regret is that we did not come up with the idea sooner, or in previous years," Morales said. "We were a little rushed in the first year of getting the program up and running." 

Ellis was typical of many of the walk-ons.

She had been a solid high school swimmer at Millard South, making varsity all four years and serving as team captain her senior year. She was a particular star in the classroom, honored in 2018 as the top scholar-athlete among high school swimmers in the metro area and earning a Regents scholarship to Nebraska. 

She was talking to her high school coach in the spring of 2018 about how she would have enjoyed being able to swim on into college but figured she couldn't because Nebraska is a Division I school. That's when she learned about the email Nebraska had recently sent to high school coaches seeking walk-ons for the coming year.

The program wouldn't accept just anyone. Those applying had to list their fastest times as well as their academic credentials, as their grades would contribute to the team's overall GPA. Ellis was ecstatic to learn she made the cut.

When she arrived on campus in August, she was issued the same high-tech suit, clothing, goggles and other equipment as scholarship swimmers. The walk-ons also got the perks of being a Husker athlete, including academic support and eating their meals at the athletic training table. 

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But as a result of the walk-ons' skill gap and the limited room available in the Bob Devaney Sports Center pool, the walk-ons held their own practice, right after the rest of the team. Morales said it was understood going in that the walk-ons could move up to the main training group if they improved enough. 

The walk-ons also weren't coached by Morales or his top assistant. Kyle Hunt, the Huskers' volunteer assistant coach, ran their practices. While the walk-ons would mostly only see Morales between practices, he was always welcoming, Ellis said.

Ellis praised the one-on-one attention Hunt gave his swimmers. He told them not to be intimidated by the skill level of the scholarship swimmers and to instead just focus on getting better. 

Because they practiced separately, the walk-ons also didn't interact very much with the rest of the team beyond seeing them in the locker room between their respective practices. "They were very welcoming and very nice," Ellis said. "I feel the walk-on team would benefit from getting to hang out with the other girls and working with them."

To provide Scott Frost a larger football roster, should Nebraska expand existing women's rosters or start a new women's sport?

But as their own group, the walk-ons grew "really, really close," Ellis said. They pushed each other in practice each day and hung out together outside the pool, eating almost every meal together. 

The two groups of swimmers were so separate, Ellis said, they were referred to as the "walk-on team" and "main team."

There were other little things that suggest the walk-ons had a kind of second-tier status. 

In addition to not being included in the introduction video, the walk-ons weren't featured in the official team photo. While the scholarship swimmers had their own lockers with their names and pictures displayed above them, the walk-ons had no lockers at all. 

In the three early-season home meets in which the walk-ons swam, they also mostly competed separately. They were given their own heats to swim in the 50- and 100-yard freestyle events.

Ellis said she welcomed that. Given the higher level of the scholarship swimmers, it would have been intimidating to swim in a lane right next to them. And the meets, she said, turned out to be a highlight of the whole experience.

Title IX: Dropping football made UNO compliant; other Nebraska schools have mixed records

The walk-ons and scholarship swimmers cheered for each other, and when they got out of the water they hugged and offered each other praise and encouragement for dropping their times.

"In those moments, you did feel like a full team," Ellis said. "It's not the walk-on team and the varsity team."

But when the third home meet ended Nov. 3, the walk-ons' season was over.

They no longer even practiced, though there was a home meet three months later they could have looked forward to and prepared for. The college swim season doesn't officially end until the NCAA championships in March.

Morales said the plan all along was to have the walk-ons swim only the first few months of the season to "help them acclimate to collegiate swimming." That made their season more comparable in length to a high school season, he said. 

But in a sport that generally demands year-long training to compete at the collegiate level, it's hard to see how practicing for less than half the season would ever put the walk-ons in a position to secure a spot in the regular lineup and chance to contribute to team success. It's also hard to imagine the university ever deciding to have football walk-ons practice only half the season.

With the walk-ons' season ending when it did, they also didn't go on the team's winter break training trip to Hawaii — one of the perks of swimming at the Division I level. While Husker athletic officials say walk-on athletes generally receive the same benefits as scholarship athletes, that wasn't true in this case.

Morales said that moving forward, he's open to the possibility of extending the walk-ons' season.

Ellis said she would have preferred a longer season. In fact, she and some of the other walk-ons personally stayed in the pool outside of Husker athletics by joining a club team that Hunt coaches.

Overall, she thought Morales and the other coaches "did an incredible job" with the walk-on program's first-year transition. When issues came up, Ellis said, the walk-ons could talk to coaches about them. The apparent video and team photo snubs, for example, were attributed to timing and scheduling issues.  

And Ellis personally loved her experience. In the end, even for top athletes who bring home hardware and titles, the memories and personal relationships are the most meaningful things gained from college athletics. 

"It brought me not only the chance to compete, but some of the closest friends I've ever had," Ellis said.

Morales said eight of the nine walk-ons have indicated they want to return, and he says there will be other new walk-ons as well. 

This year Ellis is hoping for a longer season and more chances to compete. And while there's a ways to go, she doesn't rule out the possibility that she or other walk-ons could one day become contributing members of the team. 

"Realistically, I just want to use this opportunity to improve as much as I can, but if that's where it would take me, that would be amazing," she said. "That would be a dream goal." 

Photos: Scott Frost through the years

Articles
Astronomers take a dim view of satellites cluttering the skies

Elon Musk

Two days after Elon Musk's SpaceX launched 60 satellites in May as part of a mission to bring quick Internet service to people worldwide, astronomers noticed something different.

As some of the satellites zipped past the Lowell Observatory in Flagstaff, Arizona, telescopes trained on the night sky captured streaks of reflected sunlight that marred their view of a far-off star system.

Astronomers now worry that the vast number of communications craft planned, including nearly 12,000 of Musk's Starlink fleet, will shine so brightly that they'll interfere with research that depends on delicate visual observations of distant galaxies and nearby asteroids. The new satellites will fly lower than many traditional craft, and will arrive in unprecedented numbers - all told, more than double the roughly 5,000 satellites that are circling Earth now.

"We just happened to be pointed in the right direction, and Starlink flew right through it" on May 25, two days after launch, said Jeffrey Hall, director of the Lowell Observatory. The unexpected appearance helped to signal that, as Hall put it, "this is potentially a problem."

Musk's Space Exploration Technologies Corp. is authorized to launch 11,943 satellites for its Starlink fleet, making it by far the leader in a total of nearly 13,000 low-Earth orbit satellites currently approved by the Federal Communications Commission, which coordinates trajectories and radio-frequency use. In addition, Amazon.com's Jeff Bezos on Thursday filed to place 3,236 Internet-beaming satellites into low-Earth orbit.

The lower trajectories offer minimal lag time for data to bounce between the ground and the spacecraft, overcoming the signal lethargy that's limited Internet-from-space schemes dependent on traditional communications satellites. Those older craft are parked some 22,000 miles above the Earth, an altitude that lets them appear to hover in one spot.

At low-Earth orbit — altitudes of just 112 to 1,200 miles — satellites need to race around the globe to stay aloft, completing orbits in as little as 90 minutes. As one moves toward the horizon it will pass signal duties off to the next satellite coming by.

Many satellites are needed if continuous, widespread coverage is the goal — thus the constellations planned by Musk and others.

There are 1,338 satellites in low-Earth orbit, according to a database compiled by the Union of Concerned Scientists. NASA, the U.S. space agency, tallied 4,972 satellites in its most recent count of payloads that are active and defunct.

The number of stars visible to the unaided human eye isn't much more than 1,628, which is how many are registered at the 5th magnitude of a brightness scale used by scientists, Robert Zinn, an astronomer at Yale University, said in an email. Abnormally favorable conditions could yield more.

Plans for low-flying satellite fleets have been around for years. The realization that they might startle sky-watchers seems novel. A video of the Starlink satellites floating in a train across the sky has attracted more than 1.3 million views on the Vimeo video-sharing site. AndMusk's public statements have varied.

"Sats will be in darkness when stars are visible," Musk tweeted May 25.

Later he tweeted, "We'll make sure Starlink has no material effect on discoveries in astronomy." Musk added that he'd sent a note to the Starlink team about "albedo reduction," or cutting the proportion of light reflected from the spacecraft.

Astronomers are studying the extent of the problem, said Pat Seitzer, former chair of the Committee on Light Pollution, Radio Interference, and Space Debris at the American Astronomical Society.

The satellites may be less bright once moved into planned higher orbits, and their visibility may vary with the seasons: their altitude means they'll stay out of the Earth's shadow and remain in sunlight even after dusk for a longer period in the summer than the winter.

"Our concern is just how bright they might be," said Seitzer, an astronomer at the University of Michigan.

Astronomers who use radio telescopes that rely on the non-visible spectrum also may be affected. They'll need to adjust to a sky full of low-orbiting satellites, said Harvey Liszt, spectrum manager for the National Radio Astronomy Observatory based in Charlottesville, Virginia.

"We will have to learn how to operate our electronics to detect weak cosmic signals in the presence of satellite signals at other frequencies that will be millions of times stronger," Liszt said by email.

The proposals for fleets serving up broadband from space fit a terrestrial policy imperative: to expand high-speed Internet service to people and places left poorly served by traditional communications providers.

It's not clear who can help if scientists determine the fleets of tomorrow will interfere with multimillion-dollar telescopes that can detect objects millions of times dimmer than those visible with the naked eye.

NASA doesn't regulate orbits or the spacecraft that enter them, said a spokesman . The Federal Aviation Administration regulates the safety of commercial launches and doesn't regulate satellites, said a spokesman.

The legal arena "is really the Wild West" and "international space law doesn't really deal with this use of outer space at all," said John Barentine, public policy director for the International DarkSky Association, which works to protect night vistas from light pollution.