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Colorado board declares $200,000-a-year cystic fibrosis drug to be affordable

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Colorado board declares 0,000-a-year cystic fibrosis drug to be affordable


Colorado’s new prescription drug review board decided in a first-in-the-nation vote that a medication costing more than $200,000 a year doesn’t qualify as “unaffordable,” based on the drug’s benefits to patients and the availability of coupons to cover out-of-pocket costs.

The Prescription Drug Affordability Board unanimously voted against declaring Trikafta — a drug to treat cystic fibrosis — unaffordable at a meeting Friday morning. If the state’s new board had determined the medication was unaffordable, it would have kicked off a process to set a maximum price that the drugmaker could charge Colorado health plans.

Six other states also have prescription drug affordability boards, but Friday’s meeting was the first time one of those boards decided whether a specific medication was unaffordable. Colorado went further than some of the other states, giving its board the power to set a maximum price that state-regulated insurance plans would pay for certain drugs.

The board’s staff reported that while Trikafta cost an average of $234,439 per patient annually, about half of patients reported they paid $50 or less out-of-pocket each month because either their insurance or assistance programs covered the rest.

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Board chair Dr. Gail Mizner said that while drugmakers’ assistance programs aren’t guaranteed to continue in the future, the board’s job was to determine whether the drug was affordable for patients now. Trikafta is a “miracle drug,” she said, but the board still can consider setting a price limit in a future year if patients report they can’t access it.

“This is not the ultimate answer,” she said of Friday’s vote.

Manufacturers’ coupons take care of individual patients’ out-of-pocket costs, but raise costs for everyone paying for insurance because they allow drugmakers to keep charging high prices, said board member Dr. Sami Diab. But fixing that is beyond the scope of Colorado’s board, he said.

Cystic fibrosis is caused when a person inherits two copies of a mutated gene, causing sticky mucus to build up in the lungs and other organs. People with the disease are at higher risk from respiratory infections, and sometimes develop malnutrition because the mucus interferes with the digestive system.

The Cystic Fibrosis Foundation estimated about 700 people in Colorado have the disease.

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Groups representing cystic fibrosis patients had raised alarms that setting a price limit on Trikafta could push manufacturer Vertex Pharmaceuticals to refuse to sell in Colorado. Supporters of the board’s process argued that companies were bluffing to avoid cuts to their revenue.

Trikafta works on a mutation shared by about 90% of patients with cystic fibrosis. Studies found that patients taking it had better lung function and fewer hospital admissions, and reported better quality of life. The drug has only been on the market for about four years, but some researchers project it could allow patients to have a near-normal lifespan. As of 2021, about half of people with cystic fibrosis who had died were 34 or younger, according to the Cystic Fibrosis Foundation.

Jennifer Reinhardt, a Denver woman whose 22-year-old daughter has cystic fibrosis, told the board that Trikafta gave her daughter hope and allowed her greater freedom, since she no longer needs to spend hours using a machine to break up the mucus in her chest. She said she also worries that limiting prices for rare-disease drugs could discourage companies from developing new treatments, such as Vertex’s new gene therapy for sickle cell disease.

“She was not able to plan for her future. Now she can,” Reinhardt said of her daughter. “She just wants to live.”

Rose Keller, who is in the minority of cystic fibrosis patients who have a mutation that doesn’t respond to Trikafta, told the board that while she would personally pay anything for a cure or treatment that improved her life, allowing drug companies to set their price means resources aren’t available for other priorities in society, such as education.

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“If Vertex is allowed to charge whatever it wants, what is to stop whatever company comes up with my drug?” she said.

In the new year, the state’s Prescription Drug Affordability Board will consider four other drugs for possible price limits. It chose five drugs from a list of medications whose prices rose at least 10% in the last year, brand-name medications that cost at least $30,000 per year and generics that cost at least $100 per month.

The other drugs the board is evaluating are:

• Genvoya, a combination pill for HIV, with a list price of about $4,000 per month

• Enbrel, used for rheumatoid arthritis and other autoimmune diseases, with a list price of more than $6,800 per month

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• Cosentyx, used for psoriatic arthritis and other autoimmune diseases, with a list price of more than $6,900 per month at typical doses

• Stelara, used for Crohn’s disease and other autoimmune conditions, with a list price of more than $12,000 a month

List prices may not reflect what health plans or individuals pay for drugs, because they don’t account for rebates.

Priya Telang, communications manager for the Colorado Consumer Health Initiative, said the board went through an exhaustive process to determine whether Trikafta was affordable, which revealed important information, such as it costs $6,000 a year to produce the drug for each patient.

Vertex’s threat to pull out marred the process, though, and terrified patients unnecessarily, she said at a news conference after the board meeting.

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“It’s completely unconscionable that a company that brings in billions of dollars would threaten to withhold medication that costs $6,000 to produce,” she said.

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Colorado River basin has lost nearly the equivalent of an underground Lake Mead

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Colorado River basin has lost nearly the equivalent of an underground Lake Mead


The Colorado River basin has lost 27.8m acre-feet of groundwater in the past 20 years, an amount of water nearly equivalent to the full capacity of Lake Mead, the largest reservoir in the United States, a new study has found.

The research findings, based on Nasa satellite imagery from across the south-west, highlight the scale of the ongoing water crisis in the region, as both groundwater and surface water are being severely depleted.

“Groundwater is disappearing 2.4 times faster than the surface water,” said Jay Famiglietti, a hydrologist at Arizona State University and the study’s senior author.

“Everyone in the US should be worried about it, because we grow a lot of food in the Colorado River basin, and that’s food that’s used all over the entire country,” he added. “These days, we’re also supporting a number of data centers and computer chip manufacturers, and these are essential to our economy.”

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The Colorado River basin provides water to approximately 40 million people across seven US states, as well as to millions of acres of farmland. Most of the groundwater losses since 2003 occurred in the Lower Colorado River basin, including Arizona, Nevada and California, the study found.

The decreasing availability of surface water is easy to visualize across the west. There are the stark photographs of the dropping levels of water in Lake Powell and Lake Mead, and images of the Colorado River, whose flow has decreased approximately 20% in the past century.

But groundwater is different, Famiglietti said: “It’s invisible. It’s mysterious. The average citizen doesn’t really understand it.”

‘Bath tub rings’ indicate how far the water level has dropped over Lake Mead near the Hoover Dam, in July 2022. Photograph: Caroline Brehman/EPA

With less visibility has come less regulation: California only instituted statewide management of its groundwater in 2014, and before that, groundwater use was largely unregulated. Arizona, which has seen big groundwater decreases, still does not regulate groundwater usage in the majority of the state, Famiglietti said, which means that most property-owners can simply pump out as much groundwater as they want.

“Overpumping” is the main cause of groundwater losses over the past 20 years, he said. “There’s nothing illegal about it, it’s just unprotected.”

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Most water across the west is used for agriculture, and as “large-scale industrial farming” has expanded in the south-west, and particularly in Arizona, so have the resources for farmers to dig deeper and bigger wells to extract groundwater, Famiglietti said. In Arizona, many of the new farms grow alfalfa, which is used as hay to feed cows. Data centers, though a much smaller overall factor than agriculture, also are a growing business that require water.

The new study found that the depletion of water storage in the Colorado River basin has sped up in the past decade. Since 2015, the basin has been losing freshwater at a rate three times faster than in the decade before, driven mostly by groundwater depletion in Arizona.

While the researchers are advocating for better management of groundwater supplies in the future, Famiglietti also said that the efficacy of groundwater regulations so far was still unclear.

The effects of the climate crisis, including rising average temperatures and more frequent and severe droughts, are expected to make the region’s water shortages worse in the future.



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Colorado first responders help deliver newborn, mother and baby okay after roadside delivery

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Colorado first responders help deliver newborn, mother and baby okay after roadside delivery


First responders in Adams County help deliver newborn on roadside, mother and baby okay

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First responders in Adams County help deliver newborn on roadside, mother and baby okay

00:27

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Sunday was a day some Colorado firefighters and sheriff’s deputies will never forget.  

South Adams County Fire


South Adams County Fire Department’s Engine 23 team responded to what they initially thought was a vehicle crash. It turned out to be a childbirth in progress.

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Deputies from the Adams County Sheriff’s Office had arrived moments earlier, and when the firefighters got there, they said “they found a (deputy) holding a newborn baby, delivered moments before.”

The firefighters quickly provided care to the new mother and baby girl. They helped to cut the umbilical cord and heard the baby’s first cry.

Once the baby and mother were taken to the hospital, a physician praised the first responders for providing great care. 

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Colorado bars and restaurants preparing for possibility of ICE inspections

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Colorado bars and restaurants preparing for possibility of ICE inspections


It was a weekend night in April at Williams & Graham, the trend-setting speakeasy in Denver’s Highland neighborhood, and the staff was worried federal immigration agents had shown up nearby.

One of them called Tiffany Hernandez, a local bartender who had recently organized a seminar with a civil rights attorney that went over what to do in a similar situation. Hernandez reached out to the attorney, who said he would be at the bar in 20 minutes.

The officers outside Williams & Graham turned out to be Denver Police officers conducting routine underage drinking enforcement rather than immigration agents, bar co-owner Saydee Hopkins told The Denver Post in an e-mail. The attorney wasn’t needed that night.

Williams & Graham has been a bar in Denver’s Highland neighborhood for 13 years. (AAron Ontiveroz, The Denver Post)

But the scene is indicative of the trepidation hanging over bars and restaurants across the country following President Donald Trump’s re-election. Earlier this month, U.S. Immigration and Customs Enforcement (ICE) agents checked the work authorizations of employees at 100 restaurants in Washington, D.C. as part of a larger sweep, according to the New York Times.

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In Colorado, ICE officers have raided apartment complexes in Aurora and a clandestine party in Colorado Springs, and migrant rights’ advocates and attorneys say it’s not a question of “if” they will move on to restaurants and other businesses in the state, but “when.”

“I’m kind of surprised we haven’t seen this yet,” Raquel Lane-Arellano, a spokesperson for the Colorado Immigrant Rights Coalition, said. “It’s just a matter of time before we see a business hit in a significant way.”

As a result, the food and beverage industry is preparing itself in several ways.

The Colorado Immigrant Rights Coalition, Service Employees International Union and Colorado Restaurant Association have held webinars and prepared guides on how managers of restaurants or other establishments should conduct themselves in case ICE arrives for an inspection. For their information, the restaurant association consulted with Fisher Phillips, a national law firm that runs a 24/7 hotline employers can call for advice during a sweep.

Hernandez, 32, doubled down on those efforts by taking it upon herself to keep her fellow bar managers informed and by traveling to industry conventions across the country.

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The bar lead at Xiquita Restaurante y Bar, Hernandez was born and grew up in Los Angeles, set on making it big in the bartending world. Proud of her Mexican heritage, she took the job at Xiquita so she could work with agave spirits, like tequila.

When Trump won his second term, it seemed like the nation was rejecting that heritage, she said. “We’re seeing abuse of our culture and our people.”

More ICE activity

The American food industry is reliant on immigrant labor. The Center for Migration Studies last year estimated that 1 million people were working in restaurants undocumented.

That’s partly why a police presence near or at bars can snowball into rumors of visits from ICE agents, amplifying the unease felt by owners and their workers.

“We are hearing of more ICE activity in local restaurants and are working with our members to educate them about how to prepare for ICE raids and audits,” Colorado Restaurant Association spokesperson Denise Mickelsen said in a statement. “We … continue to share information from our legal partners so that restaurant workers and operators feel prepared.”

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A spokesperson for ICE said in an e-mail that its agents have recently held “worksite enforcement operations in and around the Denver area,” but wouldn’t specify businesses or if they included places where food and drink are served. The agents requested I-9 forms — documents that verify a person’s legal work status — from owners for their staff, the spokesperson said.

Anguished over the mass deportations around the country and scared for the future of her industry, Hernandez reached out to Milo Schwab, a civil rights attorney and a regular, with his wife, at Xiquita. The restaurant was already hosting regular talks about the culinary scene. She invited Schwab to come and pass along some basic information to bar managers about due process during an official search.

About 60 people attended the January meeting, Hernandez said. She then led a workshop at Pony Up, a downtown bar, the following month and another at Jungle in Boulder a month after that.

They looked over the types of warrants ICE agents were likely to show up with. They walked over the difference between public and private spaces inside of restaurants. Mainly, they answered questions from a group unfamiliar with, and concerned over, immigration check-ups.

Federal agents cannot conduct a business search without a warrant, though agents have shown up with improperly signed and even unsigned warrants in the past, Schwab said. The goal of the workshops, he said, is to give managers a little insight into these potential discrepancies.

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“It still is a mystery to many of them,” he said. “Because, while hopefully I demystified it just a touch, they still haven’t been through it.” (It was Schwab whom Hernandez later dispatched to Williams & Graham for what turned out to be a false alarm.)

Chamoy margaritas at Xiquita in Denverroado on Tuesday, July 30, 2024. (Photo by AAron Ontiveroz/The Denver Post)
Chamoy margaritas at Xiquita in Denverroado on Tuesday, July 30, 2024. (Photo by AAron Ontiveroz/The Denver Post)

At another bar near Williams & Graham, whose owner asked to remain unnamed to quell misinformation, rumors of ICE sightings have previously spread on two separate instances. One was police serving a liquor license violation; the other was officers coincidentally responding to a car crash on the street, the owner said.

Denver police spokesman Doug Schepman said in a statement that officers are prohibited by state and local law from enforcing civil federal immigration laws and don’t ask about immigration status when they are handling liquor license issues.

Taking no chances

The federal government’s immigration crackdown has spread fear among Latinos in the U.S., 42% of whom worry they or someone they know could face deportation, according to a Pew Research Center report from April. Immigration sweeps in restaurants are also not unprecedented and were a notorious practice for two decades under former Maricopa County Sheriff Joe Arpaio in Arizona.

So, when a friend invited her to attend Arizona Cocktail Week in Phoenix in March, Hernandez asked if she could speak at the industry convention. There she partnered with Juliana Manzanarez, another immigration attorney who will accompany her to upcoming bar conventions in New Orleans, Nashville and Brooklyn, she said. The pair is raising funds to cover airfare and lodging for the events.

To Manzanarez, who remembers Arpaio’s immigration sweeps in Phoenix and is concerned about whether the current presidential administration is violating people’s Constitutional rights, the rumors and level of high alert in Denver are warranted.

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“Enforcement now is heavy. Don’t assume that it can’t happen to you,” Manzanarez said.

For Hernandez and the two attorneys, the point is not to keep officials from doing their job; rather, it’s for restaurants to document the interaction they may have and for officers to comply with the rules for a search.

“People are now just understanding a hundred days in [to Trump’s presidency] actually how important it is to know what their constitutional rights are,” Hernandez said. “Because we’re already seeing due process getting taken away.”

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