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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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Hard-throwing rookie Misiorowski going to ASG

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Hard-throwing rookie Misiorowski going to ASG

Hard-throwing rookie Jacob Misiorowski is a National League All-Star replacement, giving the Milwaukee Brewers right-hander a chance to break Paul Skenes‘ record for the fewest big league appearances before playing in the Midsummer Classic.

Misiorowski was named Friday night to replace Chicago Cubs lefty Matthew Boyd, who will be unavailable for the All-Star Game on Tuesday night in Atlanta because he is scheduled to start Saturday at the New York Yankees.

The 23-year-old Misiorowski has made just five starts for the Brewers, going 4-1 with a 2.81 ERA while averaging 99.3 mph on his fastball, with 89 pitches that have reached 100 mph.

If he pitches at Truist Park, Misiorowski will make it consecutive years for a player to set the mark for fewest big league games before an All-Star showing.

Skenes, the Pittsburgh Pirates right-hander getting ready for his second All-Star appearance, had made 11 starts in the majors when he was chosen as the NL starter for last year’s All-Star Game at Texas. He pitched a scoreless inning.

“I’m speechless,” said a teary-eyed Misiorowski, who said he was given the news a few minutes before the Brewers’ 8-3 victory over Washington. “It’s awesome. It’s very unexpected and it’s an honor.”

Misiorowski is the 30th first-time All-Star and 16th replacement this year. There are now 80 total All-Stars.

“He’s impressive. He’s got some of the best stuff in the game right now, even though he’s a young pitcher,” said Yankees slugger Aaron Judge, who is a starting AL outfielder for his seventh All-Star nod. “He’s going to be a special pitcher in this game for a long time so I think he deserved it and it’s going be pretty cool for him and his family.”

Carlos Rodón, Carlos Estévez and Casey Mize were named replacement pitchers on the AL roster.

The New York Yankees‘ Rodón, an All-Star for the third time in five seasons, will replace teammate Max Fried for Tuesday’s game in Atlanta. Fried will be unavailable because he is scheduled to start Saturday against the Chicago Cubs.

In his final start before the All-Star game, Rodón allowed four hits and struck out eight in eight innings in an 11-0 victory over the Cubs.

“This one’s a little special for me,” said Rodón, an All-Star in 2021 and ’22 who was 3-8 in his first season with the Yankees two years ago before rebounding. “I wasn’t good when I first got here, and I just wanted to prove that I wasn’t to going to give up and just put my best foot forward and try to win as many games as I can.”

The Kansas City Royals‘ Estévez replaces Texas’ Jacob deGrom, who is scheduled to start at Houston on Saturday night. Estévez was a 2023 All-Star when he was with the Los Angeles Angels.

Mize takes the spot held by Boston‘s Garrett Crochet, who is scheduled to start Saturday against Tampa Bay. Mize gives the Tigers six All-Stars, most of any team and tied for the franchise record.

Royals third baseman Maikel Garcia will replace Tampa Bay‘s Brandon Lowe, who went on the injured list with left oblique tightness. The additions of Estévez and Garcia give the Royals four All-Stars, matching their 2024 total.

The Seattle Mariners announced center fielder Julio Rodríguez will not participate, and he was replaced by teammate Randy Arozarena. Rodríguez had been voted onto the AL roster via the players’ ballot. The Mariners, who have five All-Stars, said Rodríguez will use the break to “recuperate, rest and prepare for the second half.”

Arozarena is an All-Star for the second time. He started in left field for the AL two years ago, when he was with Tampa Bay. Arozarena was the runner-up to Vladimir Guerrero Jr. in the 2023 Home Run Derby.

Rays right-hander Drew Rasmussen, a first-time All-Star, is replacing Angels left-hander Yusei Kikuchi, who is scheduled to start Saturday night at Arizona. Rasmussen is 7-5 with a 2.82 ERA in 18 starts.

San Diego added a third NL All-Star reliever in lefty Adrián Morejón, who replaces Philadelphia starter Zack Wheeler. The Phillies’ right-hander is scheduled to start at San Diego on Saturday night. Morejón entered the weekend with a 1.71 ERA in 45 appearances.

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M’s Raleigh hits 2 more HRs, brings total to 38

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M's Raleigh hits 2 more HRs, brings total to 38

DETROIT — Cal Raleigh hit his 37th and 38th home runs in Seattle‘s 12-3 victory over Detroit on Friday night to move within one of Barry Bonds’ 2001 major league record for homers before the All-Star break.

Raleigh hit a solo homer off former teammate Tyler Holton in the eighth to tie the American League record of 37 before the All-Star break set by Reggie Jackson in 1969 and matched by Chris Davis in 2013.

“[Holton] and I are really good friends, and I’ve caught a lot of his pitches,” said Raleigh, who was in the lineup as the designated hitter instead of at catcher. “I don’t think that helped much, but I’m sure he’s not very happy with me.”

Raleigh hit a grand slam off Brant Hurter in the ninth.

“I didn’t even know it was a record until just now,” Raleigh said. “I don’t have words for it, I guess. I’m just very grateful and thankful.”

It was Raleigh’s eighth multihomer game this season, tying Jackson (also in 1969) for the most such games before the All-Star break in MLB history, according to ESPN Research. He also tied Ken Griffey Jr. for the most multihomer games in Mariners franchise history.

Seattle has two games left in Detroit before the break.

“Cal Raleigh … this is just unbelievable,” Mariners manager Dan Wilson said. “He’s already set the AL record and now he’s only one short of Barry. There are two games, so who knows?”

Raleigh hit 10 homers in March and April, 12 in May, 11 in June and has five in July.

“This is a very boring comment, but baseball is all about consistency,” Wilson said. “This hasn’t been one hot streak, he’s doing this month after month. That says everything.”

The Associated Press contributed to this report.

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Bellinger goes deep for 3rd time after Cubs rob HR

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Bellinger goes deep for 3rd time after Cubs rob HR

NEW YORK — Robbed an inning earlier, Cody Bellinger wasn’t sure his first three-homer game had been swiped away again.

“I didn’t know at first,” he said. “For that third one to finally get over feels pretty good.”

Bellinger hit three two-run homers against his former team and was denied a fourth by a spectacular catch, leading the Yankees to an 11-0 rout of the Chicago Cubs on Friday night.

Aaron Judge made a trio of outstanding grabs in right field for the Yankees, who have won five straight games following a a six-game losing streak.

Bellinger, whose dad Clay played for the Yankees from 1999 to 2001, is a two-time All-Star and 2019 NL MVP.

He spent 2023 and 2024 with the Cubs, hitting .266 with 18 homers and 78 RBIs in 130 games last year while missing time because of a broken right rib. The Cubs traded him to New York in December with $52.5 million remaining on his contract and agreed to pay the Yankees $5 million.

He homered in a three-run third off Chris Flexen and in the fifth against Caleb Thielbar for this 18th multihomer game. Bellinger nearly went deep in the seventh but was robbed by Kyle Tucker on a drive above the right-field wall.

“I was watching it. He timed it up perfect, so I was a little sick about it, honestly,” Bellinger said. “But it was a good catch.”

“Boys were giving me a hard time after he robbed it. Boonie was giving me hard time,” Bellinger added.

A four-time All-Star and a Gold Glove winner, Tucker snatched the ball as a fan tried for it, the spectator clasping both sides of the outfielder’s glove.

“I caught the ball and he caught my glove, so I figured even if I dropped it they’d probably look at it and get it overturned,” Tucker said. “I’ve probably had some encounters with me trying to go into the stands and catching a ball and me hitting someone’s hand or whatever but I don’t know if anyone’s ever actually kind of caught my glove while doing it.”

Bellinger homered in the eighth off Jordan Wicks, just above the red glove of leaping center fielder Pete Crow-Armstrong and into the dark glove of a kid in the front row.

“The fan just beat to the spot,” Crow-Armstrong said. “He just had a better chance of catching it higher than I did.”

Bellinger, who had rounded first, watched and then smiled when he saw he had hit No. 3.

“Glad the fan caught it before PCA could grab it,” said Bellinger, who met the boy after and got the ball back. “I’ve seen PCA rob so many homers. He’s a freak athlete out there.”

Bellinger is batting .406 over a career-high 16-game hitting streak, raising his average to .285 with 16 homers and 54 RBIs.

He had spoken with his Cubs ex-teammates during batting practice.

“No, no, no revenge,” he said. “Honestly, ultimately it was just fun to be out there. I saw a bunch of guys I hadn’t seen in a while and I shared a bunch of good memories with them for these past two years.”

Jazz Chisholm Jr. and manager Aaron Boone encouraged Bellinger to emerge from the dugout for a curtain call.

“He was a little reluctant, but then the Bell-lin-ger” over the dugout got pretty loud. So I think he succumbed to it,” Boone said. “Belly’s loved being here and loved playing here in a meaningful place to him, going back to his childhood.”

Bellinger turns 30 on Sunday and can opt out of the final season of his contract this fall. With long balls and wide smiles, he seems to have found a home in the Yankees clubhouse.

He tried not to make much of getting the three homers against the Cubs, but Bellinger’s teammates could sense the significance.

“It’s always good to go against your old teammates that you spend a lot of time with, you know, you respect,” Boone said. “To perform right away against them I’m sure probably is a little cherry on top for him.”

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