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For people with cystic fibrosis, like Sabrina Walker, Trikafta has been a life-changer.

This story also ran on CBS News. It can be republished for free.

Before she started taking the drug, she would wind up in the hospital for weeks at a time until antibiotics could eliminate the infections in her lungs. Every day, she would wear a vest that shook her body to loosen the mucus buildup.

One particularly bad flare-up, known as a pulmonary exacerbation, had her coughing up blood in 2019, so she was put on the newly approved breakthrough medication.

Within a month, her lung function increased by 20%, she said, and her health improved. Before she started taking Trakafta, she could count on three to four hospitalizations a year. Over the four years on the medication, she has been hospitalized only once.

I was spending hours a day doing airway clearance and breathing treatments, and that has been significantly reduced, said the 37-year-old Erie, Colorado, mother. Ive gained hours back in my day.

Now she runs and hikes in the thin Colorado air and works a full-time job. Other patients have seen similar gains with the drug therapy, allowing many to resume regular lives and even take themselves off waiting lists for a lung transplant. Yet Walker and scores of other Colorado patients with cystic fibrosis are worried they could lose access to that transformative medication.

A state board charged with addressing the affordability of the most expensive prescription drugs has chosen Trikafta among its first five drugs to review, and it could move to cut the medications average in-state annual price of approximately $200,000, accounting for both insurers contributions and patients out-of-pocket costs. Drugmakers, including Trikafta’s maker, Vertex Pharmaceuticals, have said payment limits could hurt innovation and limit access, stoking panic among patients that the drug might no longer be sold in Colorado.

Two of the drugs chosen by the state board, the rheumatoid arthritis treatment Enbrel and the psoriasis medication Stelara, also appear on the initial list of 10 drugs for which Medicare will negotiate prices. Any federally negotiated price reductions wont go into effect until 2026, and its unclear how that effort will affect the Colorado boards work in the interim. Sabrina Walker, who has cystic fibrosis, has seen her lung health improve since taking Trikafta. Patients worry potential payment limits on the medication set by Colorados drug affordability board could cause the drugmaker to stop selling Trikafta in the state.(Adam Walker)

The Colorado boards choice of drugs to review elucidates one of the thorniest questions the board must wrangle with: Would lowering the price tag for rare-disease medications lead manufacturers to pull out of the state or limit their availability? State officials contend that the high cost of prescription drugs puts them out of reach for some patients, while patients worry that theyll lose access to a life-changing therapy and that fewer dollars will be available to develop breakthrough medications. And with affordability boards in other states poised to undergo similar exercises, what happens in Colorado could have implications nationwide.

It just puts Trikafta as a whole at risk, Walker said. It would start here, but it could create a ripple effect.

Cystic fibrosis is a genetic condition that causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, leading to lung damage, infections, and malnutrition. It is a progressive disease that results in irreversible lung damage and a median age of death of 34 years. There is no cure.

The rare disease affects fewer than 40,000 people in the U.S., including about 700 in Colorado. That means research and development costs are spread across a smaller number of patients than for more common conditions, such as the millions of people with heart disease or cancer.

Officials from Vertex Pharmaceuticals declined a request for an interview. But company spokesperson Sarah DSouza emailed a statement saying that the price of this medicine reflects its value to patients, the small number of people living with CF, the billions of dollars Vertex has invested to date to develop the first medicines to treat the underlying cause of CF, and the billions more we are investing in CF and other serious diseases.

Setting an upper payment limit, the company said, could hinder access to drugs like Trikafta and curtail investment in scientific innovation and drug discovery.

State officials counter that Vertex and other drugmakers are resorting to fear-mongering to protect their profits.

Colorado Insurance Commissioner Michael Conway said that whenever the state talks about saving people money on health care, the affected entity be it a hospital, insurance company, or drug manufacturer cries foul and claims there will be an access problem.

This is just, from my vantage point, the pharmaceutical industry trying to scare people, he said.

Colorados Prescription Drug Affordability Board has been working for more than a year to sort through 604 drugs eligible for review, with 17 data points for each, to create a prioritized list. In the end, they decided to focus this year only on drugs that had no brand-name competition or generic alternatives that could lower costs. Email Sign-Up

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Besides Trikafta, Enbrel, and Stelara, the board will review the affordability of the antiretroviral medication Genvoya, used to treat HIV, and another psoriasis treatment, Cosentyx.

Of those five, Trikafta had the highest average annual costs but the lowest five-year increase in price and the fewest patients taking it.

The boards review of the five drugs will happen over its next three to four meetings this year and early next year, allowing all stakeholders including patients, pharmacies, suppliers, and manufacturers to provide feedback on whether the drugs are indeed unaffordable and what a reasonable price should be. Any cost limits wouldnt take effect until next year at the earliest.

The board looked at what patients were paying out-of-pocket for their medicines, using a database that captures all the insurance claims in the state. But that data did not account for patient assistance programs, through which manufacturers reimburse patients for out-of-pocket costs. Such programs boost manufacturer sales of drugs because insurance covers most of the cost, and patients otherwise might not be able to afford them.

Through the first half of the year, Vertex reported profits of $1.6 billion, with 89% of its revenue coming from Trikafta (marketed as Kaftrio in Europe). At the beginning of the year, Vertex decreased copay assistance for people with cystic fibrosis, in what the company said was a response to insurers’ limiting patients’ ability to apply copay assistance to their deductibles.

Lila Cummings, director of the Colorado board, said its staff could not find any entity that collects data on patient assistance programs, so those figures were not available to the board. Once they begin reviewing the individual medications, board members will dig into what extra financial help patients are getting. Cummings also said the board is hoping manufacturers will convey in good faith what might prompt them to leave the Colorado market.

When Trikafta came up second on the Colorado boards prioritized list of drugs eligible for review, patients and advocacy groups flooded the board with pleas to leave pricing for the medication and other drugs for rare diseases untouched.

People are scared, Walker said. If you look at all the drugs out there, it’s one that has been so transformational that I think it will go down in history for how positively its impacted our population as a whole.

According to the Cystic Fibrosis Foundation, lung exacerbations dropped 65% and lung transplants dropped 80% after the drugs approval. More patients have been able to work, attendschool, or start a family. Clinicians have reported a baby boom among patients who take Trikafta.

A study published this year showed that two-thirds of people with cystic fibrosis struggled with finances, experiencing debt, food insecurity, or trouble paying for household or health expenses. The survey was conducted in 2019, before the FDA approval of Trikafta.

Years ago, the Cystic Fibrosis Foundation invested in Aurora Biosciences, later acquired by Vertex Pharmaceuticals, to promote development of cystic fibrosis therapies. The foundation completed the sale of its royalty rights in 2020.

Mary Dwight, chief policy and advocacy officer for the Cystic Fibrosis Foundation, said the board should ensure its review of Trikafta accounts for the overall value this drug has for someone with CF, including the impact on an individuals long-term health and well-being.

There is no guarantee that the Colorado board will take action on Trikafta. State officials have stressed that board members are solely focused on improving access and wouldnt jeopardize the availability of the medication.

We have a history of being able to save people money on health care that doesnt lead to access problems, Conway said. Were not talking about these companies losing money at all; were talking about making it more affordable so that more Coloradans can get access to the pharmaceutical needs that they have.

But Walker remains unconvinced.

They had so much testimony on their call and they still selected Trikafta, she said. Everyone was just saying how important this drug is, and it didnt matter. It still got pushed through.

Markian Hawryluk: MarkianH@kff.org, @MarkianHawryluk Related Topics Health Care Costs States Colorado Drug Costs Prescription Drugs Contact Us Submit a Story Tip

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Landeskog: 1st game in 3 years ‘a memory for life’

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Landeskog: 1st game in 3 years 'a memory for life'

DENVER — Colorado Avalanche captain Gabriel Landeskog took the ice in his first NHL game in nearly three years Wednesday night in a 2-1 overtime loss to the Dallas Stars in Game 3 of their first-round series.

It marked his first NHL appearance since June 26, 2022, when he and the Avalanche beat Tampa Bay to win the Stanley Cup. He had been sidelined because of a chronically injured right knee.

Landeskog started alongside Nathan MacKinnon and Martin Necas. He played just over four minutes in the first period, making an immediate impression in Game 3 by hitting Stars forward Mikko Rantanen, who used to be Landeskog’s teammate. He had no shots on goal but finished with a team-leading six hits in 13:16 of ice time.

The Stars took a 2-1 series lead.

“Felt great in all areas tonight in terms of being back,” Landeskog said. “Very special night regardless of the outcome.”

It was an emotional lead-up to the game for Landeskog. There were the ovations from the crowd, and chants of “Landy, Landy, Landy.” There were signs all over the arena, including one held up by his kids that read, “So proud of you Daddy!” The team also played a video tribute, with Landeskog tapping his heart in appreciation.

Landeskog said he felt “blessed and very fortunate” to be embraced by the crowd.

“I don’t know exactly what was going through my mind and body at that time, but it was pretty special, and that’s a memory for life. Simple as that,” Landeskog said. “Avs faithful, they make it special, you know? It’s a special place to play, it’s a special place to live and raise a family. And obviously the last three years have been difficult at times. And to come back and feel that love, I mean, incredible. So it means a lot.”

Landeskog said Rantanen welcomed him back when the two lined up for the opening faceoff Wednesday night.

“Regardless of what jersey he wears I love him. He’s a good friend of mine,” Landeskog said of Rantanen after the game. “But in this series, we’re obviously not friends when we’re playing. But obviously very special to be out there for that.”

It was Landeskog’s first game with the Avalanche in 1,032 days. He became the fifth player in NHL history — among those with a minimum of 700 games played — to return to his team after 1,000 or more days without a game, according to NHL Stats. The last one to do so was longtime Avalanche forward and Hall of Famer Peter Forsberg.

“I feel surprisingly calm and in control right now. I know the butterflies and the nerves will come, I’m sure,” Landeskog said during a pregame interview. “I found myself thinking about this moment a lot over the last three years. And now that it’s here, it’s the reverse — I’m thinking a lot about the hard work that’s gone into it, some of the ups, a lot of the downs, sacrifices and support I’ve had along the way.

“Thankful for everybody and all their support, but now it’s go time so I’m excited to get out there.”

Landeskog’s presence on the ice figured to provide a big boost not only for his teammates but the capacity crowd. His No. 92 sweater is a frequent sight around the arena.

The noise in the building was loud, the energy was electric.

“Everyone is rooting for him. It’s a great comeback story,” Avs coach Jared Bednar said after morning skate. “I trust in Gabe’s preparation, and what I’m seeing with my own eyes that he’s getting close and ready to play. I think he feels really good about where he’s at.

“Adding him back into our locker room, he’s almost an extension of the coaching staff, but he’s still one of the guys and the guy that everyone looks up to. You can’t get enough of that this time of the year.”

Landeskog’s injury dates to the 2019-20 season when he was accidentally sliced above the knee by the skate of teammate Cale Makar in a playoff game against Dallas. Landeskog eventually underwent a cartilage transplant procedure on May 10, 2023, and has been on long-term injured reserve.

He was activated Monday before Game 2 in Dallas and skated in pregame warmups but didn’t play.

Stars forward Matt Duchene was teammates with Landeskog, and they remain good friends.

“We’ve been rooting for him to come back,” said Duchene, who was the No. 3 pick by Colorado in 2009. “Obviously, it makes our job harder having a guy like that out there, but on the friends side, the human side and the fellow athlete side, I think everyone’s happy to see the progress he’s made. … I’m just really happy that he’s gotten to this point.”

It doesn’t mean the Stars will take it easy on Landeskog — or him on them.

“It’s remarkable he’s coming back, if he’s coming back, as a friend,” said Rantanen, a 2015 first-round pick by Colorado before being traded in January to Carolina and on to Dallas in March. “As an opponent, obviously, no mercy.”

The 32-year-old Landeskog recently went through a two-game conditioning stint with the American Hockey League’s Colorado Eagles. He practiced with the Avalanche leading up to their playoff opener.

The Associated Press contributed to this report.

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Coach: Oilers ‘gift-wrapping opportunities’ for L.A.

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Coach: Oilers 'gift-wrapping opportunities' for L.A.

It’s not just the Los Angeles Kings who are beating the Edmonton Oilers. The Oilers are also beating themselves.

That was the response Wednesday from Oilers coach Kris Knoblauch after he watched his team allow six goals for the second straight game in a 6-2 loss to the Kings in Game 2 of the Western Conference quarterfinals.

“The last two games, [the Oilers have allowed] five on the special teams, so that’s a problem,” Knoblauch said. “The other one is just mistakes. I don’t necessarily see us — I don’t see L.A. making plays to beat us. Mistakes, gift-wrapping opportunities. That’s different. If they make a heck of a play and [are] able to score goals, you just tip your hat and say, ‘There’s not much we’re able to do.’ But I don’t think I’ve seen very much of that. I think it’s been mostly gaffes that have cost us.”

Entering the postseason, the defending Western Conference champions were already facing questions about how their defensive structure would perform against the Kings. Most of those concerns were centered around their goaltending, which finished the regular season in the bottom 10 in team save percentage, according to Natural Stat Trick. The concerns were further amplified by the fact that one of their best players, defenseman Mattias Ekholm, would miss the first round with an undisclosed injury.

Game 1 against the Kings saw the Oilers fall into a 4-0 deficit before a late second-period goal from Leon Draisaitl sparked a comeback that saw them tie game with 88 seconds left in the third before Phillip Danault scored the game winner with 42 seconds remaining in L.A.’s 6-5 victory.

In Game 2, the Kings jumped out to a 3-0 lead before goals from Draisaitl in the second and former Kings winger Viktor Arvidsson in the third cut the lead to 3-2 before the Kings scored three unanswered goals in less than five minutes.

Knoblauch pulled goaltender Stuart Skinner after the fifth goal before his replacement, Calvin Pickard, allowed a goal on three shots in a little more than a minute worth of work.

“We’re down 5-2, give him a break, but also sometimes when the goalies change, there’s a little boost to our team, an immediate spark,” Knoblauch said. “That’s a stretch, it’s a long shot after the TV timeout, give it a try.”

Knoblauch was asked by reporters how he’ll assess who will start in Game 3 between Skinner, who has allowed 11 goals on 58 shots through two games, or Pickard.

The second-year Oilers coach said he’ll get together with his coaching staff and decide.

But Knoblauch added that he believed Skinner was not at fault for the team’s defensive troubles.

“I don’t think there’s been any bad goals. There’s been a lot of goals but the chances that we’re giving up are Grade A’s,” Knoblauch said. “I’m not sure that are many, ‘Geez, where’s the save there?’ It’s been very difficult for a goaltender playing. More structure and the less we’re giving up those opportunities, it’s a lot easier for Stuart Skinner or Calvin Pickard playing.”

Brandt Clarke scored the Kings’ first goal on the power play as he was able to get open in the slot for a tip-in on an odd-skater rush. Quinton Byfield pushed it to 2-0 when he walked in on net and fired a point-blank attempt that beat Skinner while Andrei Kuzmenko‘s goal saw him get behind the Oilers on the power play.

“When you’re making that gaffe and a guy is all by himself in the slot and we’ve seen probably three of those in the last two games, that’s not giving your goaltender much help,” Knoblauch said.

With Clarke, Kuzmenko and Anze Kopitar all scoring power-play goals, it led to Knoblauch addressing why the Oilers have struggled whenever the Kings have been on the extra-skater advantage.

Edmonton’s penalty kill was among the factors in its run to the Stanley Cup finals last season. The Oilers were an NHL-best 94.3% in short-handed situations.

Through two games this postseason, they’ve already allowed five goals on 10 power-play opportunities.

“They made a change at the end of the season, and it’s a good power play,” Knoblauch said. “There’s a lot of good moving parts there and it’s difficult to check all five of those guys. They bring a different element. It’s exactly what we expected from them. We saw a lot of penalty kills in our last regular-season game against them, and obviously, we’ve looked at the other games they’ve played against other teams. I don’t think there’s anything that’s unexpected.”

Knoblauch’s recollection of what the Oilers saw from the Kings toward the end of the regular season plays into what could become part of a larger narrative throughout the series.

In their last four combined regular-season and playoff games against the Kings, the Oilers have allowed 20 goals. That includes a 3-0 loss on April 5 followed by a 5-0 loss on April 14.

With the series set to resume Friday in Edmonton, the Oilers will try to find the cohesion that has eluded them against a team they’ve faced in the first round for what is now a fourth consecutive season.

Over their previous three encounters, they’ve split the first two games with the Oilers going on to win the series. But with the Kings leaving L.A. with a pair of victories, they now stand two wins shy of advancing to the second round for the first time since the 2013-14 season, when they won their most recent Stanley Cup.

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Thompson ‘the difference’ in 3rd as Caps go up 2-0

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Thompson 'the difference' in 3rd as Caps go up 2-0

WASHINGTON — The highlight-reel, diving save that it looked like Logan Thompson made to rob Jake Evans was not actually a save at all, and he wants to make sure everyone knows that.

“I didn’t save it,” Thompson said. “It went off the post. I think I almost knocked it in.”

Sure, Thompson and the Washington Capitals got a little lucky on that one. But his goaltending in the third period, when he made some spectacular stops, is the biggest reason they lead the Montreal Canadiens two games to none in their first-round playoff series.

“He was the difference tonight in the third: He wins us that game in the third period,” coach Spencer Carbery said after a 3-1 victory in Game 2, after which Thompson was selected the first star. “You could feel the building with the energy with each save. It felt like he just got bigger and bigger and bigger. He was tested. He made some huge saves in that third period to keep us in front.”

The Canadiens had multiple opportunities to tie the score, trailing 2-1 and pressing Thompson.

They got a 2-on-0 rush with 11 minutes left, but Thompson stopped Josh Anderson. With 4:22 on the clock, he got his stick in front of a textbook deflection by Christian Dvorak, who beat him earlier for a goal. And on the next shift, he denied Juraj Slafkovsky.

Fans rose to their feet to give Thompson a standing ovation and chanted “LT! LT!” after each of the saves.

“Extraordinary,” rookie Ryan Leonard said. “A lot of trust back there with that guy. He’s a gamer.”

Making it an even better tale is this was just Thompson’s second game back after getting injured when a shot dislodged his mask April 2 at Carolina.

“I knew I wasn’t going to get a game before playoffs,” Thompson said. “Just staying ready in practice, working as hard as I can and just waiting to see if I get my name called. It did. It’s playoffs. It’s not the start of the year: You can’t take your time to get into it. You just have to hit it sprinting. That’s kind of what I’ve done, and it’s worked out.”

Thompson and Charlie Lindgren alternated starts for the first half of the season. Then it became evident Thompson was Washington’s No. 1 netminder, something solidified when he got a six-year, $35.1 million extension in late January and Lindgren signed for three years and $9 million in early March.

Lindgren shouldered the load down the stretch, a year after carrying the Capitals into the playoffs, but there was no doubt about Carbery and goaltending coach Scott Murray going to Thompson to start the series as long as the 28-year-old was healthy.

“These games, this is where he wants to play,” Carbery said. “He wanted to play in the playoffs. He said: ‘I’m ready to go. I want to be in the net in Game 1.’ No disrespect to Charlie Lindgren. He wants these moments, and that’s an important part of it.”

Thompson made an important save early in the second period to keep his team’s deficit at one goal. He was at his best in the third, making 14 of his 25 saves to keep Montreal from evening things up.

“We knew they were going to come out in the third just like they did last game, Thompson said. “It’s easy to get into it when you make those saves. You’re definitely right back in the game. It could easily swing the other way if a couple of those go in and you’re fighting it, right? Luckily things went my way.”

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