Taxpayers and charities helped develop Zolgensma. They got nothing from the recording-setting price.
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The Big Story

February 12, 2025 · View in browser

In today’s newsletter: What one gene therapy’s creation story reveals about drug pricing; a wave of Trump administration reporting; guilty pleas from the subject of one of our investigations; and more from our newsroom.

What a $2 Million Per Dose Gene Therapy Reveals About Drug Pricing

Taxpayers and charities helped develop Zolgensma. Then it debuted at a record price, ushering in a new class of wildly expensive drugs. Its story upends the widely held conception that high prices reflect huge industry investments in innovation.

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Trump Administration

 
Donald Trump

Jim Watson/AFP via Getty Images

Just after the election, we outlined what ProPublica would be focusing on in Donald Trump’s second presidency and began asking federal workers and anyone with expertise to share what changes they were seeing in the federal government. As a result, we’ve been able to publish timely stories about what’s happening inside the administration. Read more of our reporting from just the past four days: 


  • Federal agencies continue to withhold money, despite multiple court orders blocking Trump’s funding freeze.
  • USAID is being dismantled, and experts say multiple laws may have broken in the process.
  • The Trump administration has terminated more than $900 million in Education Department contracts, taking away a key source of data on the quality and performance of the nation’s schools, at the behest of Elon Musk’s demolition crew, the Department of Government Efficiency.
  • The Department of Education also told employees late Friday that it will end all programs, contracts and policies that “fail to affirm the reality of biological sex,” carrying out Trump’s vow to restrict transgender rights. Which specific programs will be targeted remains to be seen.
 

Impact

Changes spurred by our Local Reporting Network

Scott Owen in court
 

Former Utah therapist Scott Owen in court. Credit: Bethany Baker/The Salt Lake Tribune

On Monday, a former Utah therapist admitted in a Provo courtroom that he sexually abused several of his patients, pleading guilty to three felony charges and no contest to another. He could face a maximum sentence of life in prison. 

Provo police began investigating Scott Owen in 2023 after The Salt Lake Tribune and ProPublica reported on a range of sex abuse allegations against Owen, who had built a reputation over his 20-year therapy career as a specialist who could help gay men who were members of The Church of Jesus Christ of Latter-day Saints. 

While Owen gave up his therapy license in 2018 after several patients complained to state licensors that he had touched them inappropriately, the allegations were never investigated by the police and were not widely known. He continued to have an active role in his therapy business until the newsrooms published their investigation.

Meanwhile in Tennessee, two Republican state lawmakers have filed legislation that aims to protect domestic violence victims by requiring more transparency from people who’ve been ordered by a court to give up their guns.

The bill’s introduction follows WPLN and ProPublica reporting that found loopholes in the state’s gun dispossession laws that allows firearms to remain in the hands of abusers who’ve been barred from keeping them, including some who have gone on to kill their victims.

 

More from the newsroom

 

A New Mexico District Says It’s Reduced Harsh Discipline of Native Students. But the Data Provided Is Incomplete.

Tennessee Lawmakers Push to Change How the State Disarms Dangerous People to Better Protect Domestic Violence Victims

Defamation Lawsuit Against Author of a ProPublica Article Ends After Courts Side With the Writer

The Staffers Helping Elon Musk Dismantle and Downsize the U.S. Government, One Agency at a Time

Utah Man Pleads Guilty to Sexually Abusing Patients “Using His Position as a Therapist”

 
 
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