cystic fibrosis

18 Stories

Parents Thrown Out of Bar for Wearing Masks

Their baby is immuno-compromised

(Newser) - Meeting friends for a drink can be hard to do under the best circumstances. It’s harder during a pandemic. But new mom Natalie Wester found a trusted babysitter—her mom—and went with her husband, Jose Lopez, to the Hang Time Sports Bar & Grill in Rowlett, Texas, to...

After Getting Last Wish From Trump, CT Man Has Died

'That phone call meant everything to him'

(Newser) - A week after receiving a call from President Trump, Jay Barrett died a happy man. The terminally ill cystic fibrosis patient from Connecticut died in his sleep overnight Tuesday, according to his sister, who'd arranged his dying wish . "I think he literally lived his best time in that...

Trump Picks Up Phone, Grants Dying Man's Wish

'I'm very proud of you,' president tells cystic fibrosis patient Jay Barrett

(Newser) - A terminally ill Connecticut man who's a big supporter of President Trump is getting a bucket list wish fulfilled, with help from his "100% Democrat" sister. Jay Barrett, who has cystic fibrosis, left the hospital to begin palliative care at his sister's home last weekend and asked...

Inspirational Social Media Star Claire Wineland Dead at 21

She suffered from cystic fibrosis, suffered a stroke after lung transplant

(Newser) - A young social media star who inspired legions of fans with her optimism despite a lifelong battle with cystic fibrosis has died at 21—a week after receiving a new set of lungs in a transplant, reports People . Claire Wineland suffered a stroke soon after the Aug. 26 transplant, and...

Company Sold $1.3B of a Drug That's Not Hugely Effective

Inside New York state's pushback against Orkambi

(Newser) - Only 28,000 of the planet's 7 billion people are eligible to take the cystic fibrosis drug Orkambi. And yet that tiny population enabled drugmaker Vertex to make roughly $1.3 billion in sales off the product. How does that math work out? The annual price of the drug...

Mom Fights for Son by Declaring She Would Have Aborted Him

Best chance of paying for toddler's pricey cystic fibrosis care is by filing wrongful-birth suit

(Newser) - Jen Gann was talking with someone earlier this year about her toddler Dudley's cystic fibrosis , a noncurable genetic disorder that afflicts sufferers with thick mucus in the lungs, causing lung infections and, for many, early death. In her piece for the Cut , Gann says that when the woman she...

Cystic Fibrosis Patients Live Longer in Canada
Cystic Fibrosis Patients
Have a Big Edge in Canada
new study

Cystic Fibrosis Patients Have a Big Edge in Canada

They live about 10 years longer than in the US

(Newser) - Canadians with cystic fibrosis live 10 years longer than their US counterparts, and health insurance is likely a big reason, new research suggests. The death rate in Canada was 44% lower than among Americans on Medicare and Medicaid, and 77% lower than Americans with no insurance, the New York Times...

Family Sues After Boy Is Expelled Over His DNA
Family Sues After Boy Is Expelled Over His DNA
in case you missed it

Family Sues After Boy Is Expelled Over His DNA

A trial could help establish exactly who can access one's genetic information

(Newser) - When Colman Chadam was born in 2000, he underwent extra medical tests after a congenital heart issue was discovered. Doctors learned that the infant carried genetic markers associated with cystic fibrosis, but he never went on to develop the disease. In fact, that test was the boy's only interaction...

A Mom Is Suing Over Her Daughter's 'Wrongful Birth'

Kerrie Evans says she would have aborted if she knew baby had cystic fibrosis

(Newser) - When Kerrie Evans went to her first prenatal visit in October 2009, she says she told her doctor she was concerned about cystic fibrosis, but she was never offered screening to see if she was a carrier for the disease, she had trouble contacting genetic counselors, and her doctor never...

State Budgets Pushed to Brink by $710-a-Day Drug

It's the latest pharmaceutical pricing controversy

(Newser) - A newly approved drug is being hailed as a major advance in treatment of cystic fibrosis, a life-threatening genetic disease that clogs the lungs with mucus and makes patients struggle to breathe. But it comes with a punishing price tag—about $710 per patient per day. Orkambi—taken as two...

FDA OKs Pricey New Cystic Fibrosis Drug

It'll cost patients about $250K a year

(Newser) - Federal health officials have approved a new combination drug for the most common form of cystic fibrosis. But it will come at a steep price—more than $250,000 for a year's treatment. The FDA cleared the twice-a-day pill from Vertex Pharmaceuticals for a variation of cystic fibrosis that...

14-Year-Old's Request to Die Goes Viral

 Request to Die 
 Goes Viral 
in case you missed it

14-Year-Old's Request to Die Goes Viral

Valentina Maureira suffers from cystic fibrosis, wants to 'sleep forever'

(Newser) - Valentina Maureira's brother died from cystic fibrosis when he was 6. The 14-year-old has the same inherited disease and was told she has a life expectancy of 17, reports CNN . Except Valentina doesn't want to live that long. The Chilean teen posted a now-viral video to Facebook late...

Judge's Ruling Clears Way for Girl to Receive Lung

Federal judge says Sarah Murnaghan eligible to be on adult donor list

(Newser) - The odds that 10-year-old Sarah Murnaghan will get a life-saving lung transplant just shot up dramatically. A federal judge in Philadelphia ruled this afternoon that Sarah is eligible to receive a lung from the adult donor list, reports AP . Normally, kids younger than 12 can't do so, but the...

School Kicks Out Boy for Having Cystic Fibrosis Gene

Colman Chadam's parents want their day in court

(Newser) - Two California parents are crying foul over a school's order to transfer their son because he has the gene for cystic fibrosis, Today Health reports. Officials at the Palo Alto school are moving Colman Chadam, 11, because another boy there has the disorder—which experts say is normally a...

Dying Boy Gets Lung From Mom, Another From Dad

Both parents and son are recovering well in Germany

(Newser) - Two German parents donated a lung each to save their 12-year-old son. The boy suffers from cystic fibrosis, and his situation became so dire in April that he was hooked up to both a ventilator and a heart-lung machine, reports Germany's The Local . With no donor in sight, his...

News of the World Scandal: Sun Editor Rebekah Brooks' Call to Gordon Brown About Son Is 'Unforgivable'
Sun's Call to
Gordon Brown

Sun's Call to Gordon Brown 'Unforgivable'

Rebekah Brooks violated basic decency on former PM's son

(Newser) - Learning that your child has a disability is hard enough—but try getting a phone call saying his illness will be front-page news. That’s what happened to Gordon Brown when his family was still coming to terms with his son’s cystic fibrosis: Then-Sun editor Rebekah Brooks, now CEO...

16-Year-Old Makes Promising Find on Cystic Fibrosis

Teen's research could lead to better drug therapy

(Newser) - Encouraging new research on the treatment of cystic fibrosis comes courtesy of an 11th-grader. Toronto 16-year-old Marshall Zhang figured out via computer simulations that two drugs have the potential to make a powerful combination in treating the disease, reports LiveScience . He then tried out his theory on living cells: "...

Drug Targets Hundreds of Disorders
Drug Targets Hundreds of Disorders

Drug Targets Hundreds of Disorders

Magic bullet hits mutations that prompt 1,800 genetic diseases

(Newser) - A magic bullet that could treat cystic fibrosis, muscular dystrophy, hemophilia and more than 1,800 other genetic disorders could be available by 2009. Lee Sweeney of UPenn, leader of the team developing the drug, tells the Times of London: “It doesn’t just target one mutation that causes...

18 Stories