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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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A pub a day to close this year, industry body warns as it calls for cut to tax burden

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A pub a day to close this year, industry body warns as it calls for cut to tax burden

An industry body has warned that the equivalent of more than one pub a day is set to close across Great Britain this year.

According to the British Beer and Pub Association (BBPA), an estimated 378 venues will shut down across England, Wales and Scotland.

This would amount to more than 5,600 direct job losses, the industry body warns. It has called for a reduction in the cumulative tax and regulatory burden for the hospitality sector – including cutting business rates and beer duty.

The body – representing members that brew 90% of British beer and own more than 20,000 pubs – said such measures would slow the rate at which bars are closing.

BBPA chief executive Emma McClarkin said that while pubs are trading well, “most of the money that goes into the till goes straight back out in bills and taxes”.

“For many, it’s impossible to make a profit, which all too often leads to pubs turning off the lights for the last time,” she said.

“When a pub closes, it puts people out of a job, deprives communities of their heart and soul, and hurts the local economy.”

She urged the government to “proceed with meaningful business rates reform, mitigate these eye-watering new employment and EPR (extended producer responsibility) costs, and cut beer duty”.

“We’re not asking for special treatment, we just want the sector’s rich potential unleashed,” she added.

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The government has said it plans to reform the current business rates system, saying in March that an interim report on the measure would be published this summer.

From April, relief on property tax – that came in following the COVID-19 pandemic – was cut from 75% to 40%, leading to higher bills for hospitality, retail and leisure businesses.

The rate of employer National Insurance Contributions also rose from 13.8% to 15% that month, and the wage threshold was lowered from £9,100 to £5,000, under measures announced by Rachel Reeves in the October budget.

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US

Gaza permanent ceasefire ‘questionable’, says senior Israeli official

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Gaza permanent ceasefire 'questionable', says senior Israeli official

A senior Israeli official has issued a less-than-optimistic assessment of the permanency of any ceasefire in Gaza.

Speaking in Washington on condition of anonymity, the senior official said that a 60-day ceasefire “might” be possible within “a week, two weeks – not a day”.

But on the chances of the ceasefire lasting beyond 60 days, the official said: “We will begin negotiations on a permanent settlement.

“But we achieve it? It’s questionable, but Hamas will not be there.”

Israeli Prime Minister Benjamin Netanyahu is due to conclude a four-day visit to Washington later today.

There had been hope that a ceasefire could be announced during the trip. US President Donald Trump has repeatedly stated that it’s close.

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Netanyahu arrives in US for ceasefire talks

Speaking at a briefing for a number of reporters, the Israeli official would not be drawn on any of the details of the negotiations over concerns that public disclosure could jeopardise their chances of success.

The major sticking point in the talks between Hamas and Israel is the status of the Israel Defence Forces (IDF) inside Gaza during the 60-day ceasefire and beyond, should it last longer.

The latest Israeli proposal, passed to Hamas last week, included a map showing the proposed IDF presence inside Gaza during the ceasefire.

Read more: What is the possible Gaza hostage and ceasefire deal?

Israeli military vehicles stand near the Israel-Gaza border, in Israel.
Pic: Reuters
Image:
Pic: Reuters

This was rejected by Hamas and by Trump’s Middle East envoy, Steve Witkoff, who reportedly told the Israelis that the redeployment map “looks like a Smotrich plan”, a reference to the extreme-right Israeli finance minister, Bezalel Smotrich.

The official repeated Israel’s central stated war aims of getting the hostages back and eliminating Hamas. But in a hint of how hard it will be to reconcile the differences, the official was clear that no permanent ceasefire would be possible without the complete removal of Hamas.

“We will offer them a permanent ceasefire,” he told Sky News. “If they agree. Fine. It’s over.

“They lay down their arms, and we proceed [with the ceasefire]. If they don’t, we’ll proceed [with the war].”

On the status of the Israeli military inside Gaza, the official said: “We would want IDF in every square meter of Gaza, and then hand it over to someone…”

He added: “[We] don’t want to govern Gaza… don’t want to govern, but the first thing is, you have to defeat Hamas…”

Smoke rises in Gaza after an explosion, as seen from the Israeli side of the Israel-Gaza border.
Pic: Reuters
Image:
Pic: Reuters

The official said the Israeli government had “no territorial designs for Gaza”.

“But [we] don’t want Hamas there,” he continued. “You have to finish the job… victory over Hamas. You cannot have victory if you don’t clear out all the fighting forces.

“You have to go into every square inch unless you are not serious about victory. I am. We are going to defeat them. Those who do not disarm will die. Those who disarm will have a life.”

On the future of Gaza, the official ruled out the possibility of a two-state solution “for the foreseeable future”.

“They are not going to have a state in the foreseeable future as long as they cling to that idea of destroying our state. It doesn’t make a difference if they are the Palestinian Authority or Hamas, it’s just a difference of tactics.”

Read more:
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On the most controversial aspect of the Gaza conflict – the movement of the population – the official predicted that 60% of Palestinians would “choose to leave”.

But he claimed that Israel would allow them to return once Hamas had been eliminated, adding: “It’s not forcible eviction, it’s not permanent eviction.”

Critics of Israel’s war in Gaza say that any removal of Palestinians from Gaza, even if given the appearance of being “voluntary,” is in fact anything but, because the strip has been so comprehensively flattened.

Reacting to Israeli Defence Minister Katz’s recent statement revealing a plan to move Palestinians into a “humanitarian city” in southern Gaza, and not let them out of that area, the official wouldn’t be drawn, except to say: “As a permanent arrangement? Of course not.”

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UK

‘A constant game of cat and mouse’: Inside the police crackdown on illegal moped delivery drivers

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'A constant game of cat and mouse': Inside the police crackdown on illegal moped delivery drivers

The first thing you notice when immigration officers stop a possible illegal moped delivery driver is the speed in which the suspect quickly taps on their mobile.

“We’re in their WhatsApp groups – they’ll be telling thousands now that we’re here… so our cover is blown,” the lead immigration officer tells me.

“It’s like a constant game of cat and mouse.”

Twelve Immigration Enforcement officers, part of the Home Office, are joining colleagues from Avon and Somerset Police in a crackdown on road offences and migrants working illegally.

Police chase suspected illegal immigrant working as a delivery drivers

The West of England and Wales has seen the highest number of arrests over the last year for illegal workers outside of London.

“It is a problem… we’re tackling it,” Murad Mohammed, from Immigration Enforcement, says. He covers all the devolved nations.

“This is just one of the operations going on around the country, every day of the week, every month of the year.”

Murad Mohammed from Immigration Enforcement
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Murad Mohammed, from Immigration Enforcement, says his team are attempting to tackle the issue

Just outside the Cabot Circus shopping complex, we stop a young Albanian man who arrived in the UK on the back of a truck.

He’s on an expensive and fast-looking e-bike, with a new-looking Just Eat delivery bag.

He says he just uses it for “groceries” – but the officer isn’t buying it. He’s arrested, but then bailed instantly.

A man inspects the Just Eat food delivery bag of a suspected illegal immigrant working as a delivery driver

We don’t know the specifics of his case, but one officer tells me this suspected offence won’t count against his asylum claim.

Such is the scale of the problem – the backlog, loopholes and the complexity of cases – that trying to keep on top of it feels impossible.

This is one of many raids happening across the UK as part of what the government says is a “blitz” targeting illegal working hotspots.

Angela Eagle, the border security and asylum minister, joins the team for an hour at one of Bristol’s retail parks, scattered with fast food chains and, therefore, delivery bikes.

Angela Eagle, Minister for Border Security and Asylum
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Border security and asylum minister, Angela Eagle, speaks to Sky News

She says arrests for illegal working are up over the last year by 51% from the year before, to more than 7,000.

“If we find you working, you can lose access to the hotel or the support you have [been] given under false pretences,” she said.

“We are cracking down on that abuse, and we intend to keep doing so.”

A suspected illegal immigrant working as a delivery driver being arrested

There are reports that asylum seekers can rent legitimate delivery-driver accounts within hours of arriving in the country – skipping employment legality checks.

Uber Eats, Deliveroo, and Just Eat all told Sky News they’re continuing to strengthen the technology they use to remove anyone working illegally.

But a new Border Security Bill, working its way through Parliament, could see companies fined £60,000 for each illegal worker discovered, director disqualifications and potential prison sentences of up to five years.

“I had them all in to see me last week and I told them in no uncertain terms that we take a very tough line on this kind of abuse and they’ve got to change their systems so they can drive it out and off their platforms,” the minister tells me.

Read more:
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The gig economy – so prevalent in every city – creates another incentive for those wanting to risk their lives coming to the UK illegally.

More than 20,000 migrants have crossed the English Channel to the UK in 2025 – a record number at this point of the year.

A suspected illegal immigrant working as a delivery driver holds his helmet

For some of those who arrive, a bike and a phone provide a way to repay debts to gang masters.

There were eight arrests today in Bristol, one or two taken into custody, but it was 12 hours of hard work by a dozen immigration officers and the support of the police.

As two mopeds are pushed onto a low-loader, you can’t help but feel, despite the best intentions, that at the moment, this is a losing battle.

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