Jun 10, 2019

ALS patients plan to protest to push for approval of new therapies

Children participating in the ALS ice bucket challenge aimed at raising awareness and funds to fight the disease. Photo: NurPhoto/Corbis via Getty Images

A group of ALS patients is planning to protest outside of the FDA this week, hoping in some ways to replicate the protests of AIDS activists in the 1980s who were also upset with the pace of the search for treatment, Stat News reports.

The big picture: The patients had hoped to see quicker results from the $115 million raised by the ALS ice bucket challenge. They also advocated for the "right to try" legislation passed last year, and are similarly disappointed with the lack of results from that.

  • They're also frustrated by the news that other breakthrough new therapies have been approved for other diseases.

Like the AIDS activists in the 1980s, the patients have a list of specific therapies they want approved.

  • The three on the list are in different stages of development, but the ALS patients want them to be fast-tracked through the approval process.
  • Top officials with the FDA have invited the protesters to meet with them, as long as the drug makers also attend.

The other side: "These people are desperate, I can see that. I see them every day, it's a horrible disease," Jonathan Glass, the director of Emory University's ALS Center, told Stat.

  • "But fast-tracking things that don't work, or may not work, or might even be harmful is not the way to go."

Go deeper: The real drug pricing debate is upon us

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Judge rules against Trump policy limiting public comment on energy leasing

Photo: Joe Amon/The Denver Post via Getty Images

A federal judge on Thursday overturned a 2018 Trump administration directive that sought to speed up energy leases on public land by limiting the amount of time the public could comment.

Why it matters: U.S. Chief Magistrate Judge Ronald Bush's decision voids almost a million acres of leases in the West, according to The Washington Post. It's a victory for environmentalists, who tried to block the change as part of an effort to protect the habitat of the at-risk greater sage grouse.

  • The ruling invalidated five oil and gas leases in Nevada, Utah, and Wyoming, and affected 104,688 square miles of greater sage-grouse habitat, per The Associated Press.
  • Leases in greater sage-grouse habitat will return to allowing 30 days of public comment and administrative protest.

The big picture: From Axios' Amy Harder, this is the latest in a long and convoluted list of regulatory rollbacks the Trump administration is pursuing on environmental rules that courts are, more often than not, rebutting. With Congress gridlocked on these matters, expect the courts to be the default way Trump's agenda faces checks (unless, of course, a Democrat wins the White House this November).

Your best defense against coronavirus

Photo: Adrian Greeman/Construction Photography/Avalon/Getty Images

Washing your hands is the best way to protect against the novel coronavirus, according to doctors and health officials, as the virus continues to spread around the globe.

Why it matters: Frequent hand washing can stop germs from spreading in a community, a known preventative for COVID-19 and influenza.

Major League Soccer embarks on its 25th season

Illustration: Aïda Amer/Axios

As Major League Soccer begins its 25th season, the league is financially stable and surging in popularity, and its 26 teams have gorgeous facilities and rapidly increasing valuations.

  • It also continues to expand, with David Beckham's Inter Miami and Nashville SC set to debut this season as the 25th and 26th teams. Plans are in place to reach 30 franchises by 2022 — triple the number from 2004.
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