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The Readout Damian Garde

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What about Duchenne's girls?

Duchenne muscular dystrophy is a disease associated with young boys and young men: The degenerative disorder, whose patients rarely live past 30, seldom manifests in females. So the clinical trials tend to focus only on males, and fundraisers are often gender-specific: “Run for Our Sons” is one of the more prominent events to raise awareness of Duchenne. 

But Deb Jenssen, a mom of triplets in Madison, Ala., feels that the medical community may be excluding her daughters. Two of her three children carry the genetic mutation that leads to Duchenne, and are showing symptoms of the disease — but, given their gender, they have not been considered patients with Duchenne muscular dystrophy. Jenssen has been attempting to enroll her children in clinical trials and has come up short. 

So, in an effort to curb the degenerative symptoms of her daughters’ disease, Jenssen is speaking out to Duchenne drugmakers and medical researchers:

“If nobody knows about us,” Deb Jenssen told STAT’s Andrew Joseph,” nobody’s going to help us.” 

Read more.

Florida is serious about importation

Florida submitted a high-level plan to the Trump administration on Friday that details how it would import drugs from Canada. The basics: Florida wants to contract with a drug wholesaler that would oversee the day-to-day operations of importing drugs for state programs, like Medicaid. They’d also test and repackage the drugs to meet U.S. safety and labeling requirements — but despite those costs, the state thinks it’d save $150 million annually. 

There’s a good reason to pay attention to this one: Florida’s a lot farther along than every other state when it comes to this issue. The Trump administration only said in July that it’s open to the idea of importing from Canada; it’s still working on its own regulations about how exactly that will work. Florida still needs HHS approval, and the agency could certainly wait until it works out its own regulations to give it, but an HHS spokesperson told STAT Friday that “all state proposals are taken seriously by the department.”

U.K. lawmaker demands clinical trial transparency

A top member of British Parliament is championing clinical trial transparency: Norman Lamb, who chairs the legislature’s Science and Technology Committee, is calling for wayward companies, trial sponsors, and investigators to be penalized. 

Lamb’s committee issued a blistering report last October on the woeful condition of trial transparency in the U.K., and he continues to be outspoken on the issue: 

“An astounding amount of information from clinical trials is going unreported,” Lamb said in a statement. “Public trust in medicine could easily be eroded by these failings from such important parts of the health system.” 

Read more.

Hackers might know too much about U.S. response to bioterror

Say there’s a bioterrorism attack. The government’s been tasked with laying out an action plan in the event that a volatile superbug gets blasted into the general public. But the details about how the U.S. monitors those threats have been vulnerable to hackers for more than a decade, according to a new report from the Los Angeles Times. Homeland Security officials don’t know whether hackers ever had access to the data, which was housed on a dot-org website run by a private contractor. 

The locations of devices like BioWatch air samplers, which are placed in subway stations and other public places all over the country to detect pathogens like anthrax or its ilk, were vulnerable for years. And internal Homeland Security emails, obtained by The Times, show a “bitter clash within the department” over whether keeping the sensitive bioterror response information on the site would be a threat to national security. 

This all came to light after a former Biowatch security manager filed a whistleblower complaint.

More reads

  • The inside story of how a tiny startup and a controversial Twitter doctor sparked viral internet outrage against CVS. (Business Insider
  • Single-cell sequencer 10X Genomics files for $100 million IPO. (FierceBiotech)

Thanks for reading! More tomorrow,


Monday, August 26, 2019


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