Coronavirus, Rare Disease Day, and biofuels – who's ready for the weekend?

February 28, 2020
We’re closing a crazy week with a recap of all the coronavirus and biofuels news you might have missed, plus a reminder about Rare Disease Day (tomorrow) and why we need to protect the Orphan Drug Act, in about 760 words, just under 4 minutes.  Enjoy the weekend. Don…
BIO

We’re closing a crazy week with a recap of all the coronavirus and biofuels news you might have missed, plus a reminder about Rare Disease Day (tomorrow) and why we need to protect the Orphan Drug Act, in about 760 words, just under 4 minutes. 

Enjoy the weekend. Don’t panic. Wash your hands.

Coronavirus Update

Coronavirus news has evolved rapidly over the past week. Following President Trump’s announcement that VP Mike Pence will lead the coronavirus task force, a whistleblower claimed HHS workers were required to interact with Americans evacuated from Wuhan without proper training or protective gear. Meanwhile, House and Senate Appropriations are working on a deal on emergency coronavirus funding, a package expected to be “much higher” than the $2.5 billion requested by the Trump administration.

BIO members continue to work around the clock on R&D for coronavirus vaccines and antivirals, with Gilead announcing they launched two late-stage studies to test the effectiveness of their experimental antiviral remdesivir, which was developed during the recent Ebola outbreak. Sandoz, meanwhile, promised to freeze prices on about 20 antiviral and antibiotic drugs that may help. And the FDA’s Center for Biologics Evaluation and Research told STAT that while a vaccine may be “months away,” effective treatments against the virus could come much sooner.

As you head into the weekend, here’s a final reminder: wash your hands regularly and don’t panic

For more news on the coronavirus response, visit www.bio.org/coronavirus.

 
Twitter
 
LinkedIn
 
Facebook
 

Rare Disease Day and the power of the Orphan Drug Act

Tomorrow (February 29) is Rare Disease Day, an international day to raise awareness for rare, “orphan” diseases—and a good time to remember why we must protect the Orphan Drug Act and incentivize R&D for new cures.

There are about 7,000 identified “orphan,” or rare, diseases—which, combined, affect more than 300 million people, or as much as 6% of the world’s population.

And 72% are genetic, with 70% starting in childhood. 

But they’re rarely covered by the media, says BIO CEO Jim Greenwood, because each disease affects just a small number of patients.

The Orphan Drug Act has helped. Passed by Congress in 1983, the legislation has incentivized development of 400+ innovative treatments for rare diseases, giving hope and a new life to millions of patients around the world suffering from diseases like Duchenne muscular dystrophy, Batten disease, spinal muscular atrophy, and more.

But 95% of rare diseases still have no treatment available—which is why we must protect the legislation’s market exclusivity and tax credit provisions to promote continued investment. 

And above all, we can’t enact price controls—because we know they will disincentivize investment in cures across the board, whether for rare diseases or widespread ones, like the coronavirus.

Read more about why the Orphan Drug Act matters:  

 

More Health Care News: 

BioPharma Dive: Where are all the deals?
In 2020, we’ve only seen one billion-dollar biopharma deal.

STAT: Anti-vaccine activists co-opt a populist slogan to try to repeal a state immunization law
Advertisements across Maine say “Reject Big Pharma.” 

 
Twitter
 
LinkedIn
 
Facebook
 

A bit of hope for the biofuels industry

There’s sunshine peeking through the clouds hanging above the American biofuels industry: the Trump administration is taking a closer look at how it issues waivers to the biofuel requirements, and might even give waivers to fewer refineries, according to reports.

A quick catch-up: Trump’s Environmental Protection Agency (EPA) has granted an unprecedented number of Small Refinery Exemptions (SREs) to the Renewable Fuel Standard (RFS), which requires a certain percentage of biofuels to be mixed in transportation fuel in the United States. 

But an appeals court ruled the EPA had gone too far, and “overstepped” its authority on three 2016 exemptions. The court asked EPA to reconsider these exemptions, because the particular refineries “had not received exemptions in the previous year,” Reuters reported in January

The administration is considering paring back the number of SREs, sources told Bloomberg

And EPA Administrator Andrew Wheeler confirmed there will be news soon, telling a House Energy and Commerce subcommittee yesterday that they’ll announce their decision on how to respond to the appeals court ruling “very shortly,” reports Agri-Pulse

Right now, it’s TBD whether or not SREs will be limited going forward—but we’re optimistic, and it’s a good sign the administration is at least considering the change.

 
Twitter
 
LinkedIn
 
Facebook
 
 
BIO Beltway Report
GoodDayBIO
 
 

President Trump’s Friday: In Charleston, South Carolina, for a campaign rally. 

What’s Happening on Capitol Hill: The House and Senate Appropriations Committees are expected to work through the weekend on the emergency funding package for the coronavirus response. Next week, the Senate’s expected to decide whether to take up a major bipartisan energy package led by Sens. Lisa Murkowski (R-AK) and Joe Manchin (D-WV).

 
 
Paragraph (normal) - Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Quis ipsum suspendisse ultrices gravida. Risus commodo viverra maecenas accumsan lacus sample link.
 
Twitter
 
LinkedIn
 
Facebook