Mar 28, 2017

Trump guest speaks out on proposed NIH cuts

John Crowley (l), Megan Crowley (r).(AP Photo/Pablo Martinez Monsivais)

John Crowley was stunned and grateful when his 20 year-old daughter Megan, who suffers from Pompe disease, was asked to be among President Trump's guests of honor at last month's Congressional Address, which coincided with Rare Disease Day. Now, however, the veteran biotech entrepreneur ― whose founding of a company to help Megan was turned into a film starring Harrison Ford ― is speaking out against proposed White House budget cuts to the National Institutes of Health that he said could harm a "virtuous circle" of research and development that helps patients.

Axios spoke to Crowley, currently chairman and CEO of publicly-traded Amicus Therapeutics, via phone. Takeaways:

On getting the Congressional Address invite:

"My daughter looked up from her wheelchair, got a bit red in the face with a look that said "Is this serious?"

On NIH funding:

"For me as an entrepreneur, it's all about inventions and healing, and I think NIH plays a crucial role. It's part of this virtuous circle that it necessary to advance medicines to patients, which also includes the grants that NIH provides to our academic institutions. Our university research system is the core for basic science and basic translational research and is the basis for a lot of the good ideas that come into a company like ours."

On healthcare costs:

"The tension has always been that we have to ensure basic universal access to the highest quality of medicines to the largest number of people. So how do you get there? I really believe that patient-centered medicine and patient choices are going to be key to getting us to access that's more affordable. We could say right now: 'No new drugs.' Then all current drugs would go generic and cost less, but I don't think that's acceptable. And if you have a kid with a rare disease or a parent with Alzheimer's it's obviously not acceptable. So if we don't invest massively in this effort, which includes NIH funding, it's going to lead to enormous amounts of human suffering."

On proposed doubling of FDA user fees:

"My sense is that it's not going to lead to an increase in drug prices. If it leads to more medicines being vetted faster at FDA, I think that's a good thing."

On rumors that he wants to challenge New Jersey Senators Cory Booker or Bob Menendez:

"No, I have no plans to run for office."

Go deeper

Mass shooting in Milwaukee: What we know so far

Milwaukee Mayor Tom Barrett in 2012. Photo: John Gress/Corbis via Getty Images

Six people died in a shooting at the Milwaukee Molson Coors brewery complex on Wednesday, including the shooter, Mayor Tom Barrett told reporters at an evening press conference with local police.

What's happening: Police said "there is no active threat" just before 6 pm ET, but noted the scene remains active. Police chief Alfonso Morales told reporters that officers have "more than 20 buildings we have to secure" at the complex and they do not currently have all employees accounted for, as more than 1,000 were at the complex during the shooting.

Go deeperArrowUpdated 27 mins ago - Politics & Policy

Live updates: CDC confirms possible community spread of coronavirus

Data: The Center for Systems Science and Engineering at Johns Hopkins, the CDC, and China's Health Ministry. Note: China numbers are for the mainland only and U.S. numbers include repatriated citizens.

U.S. clinicians have found the novel coronavirus in a person who did not recently return from a foreign country nor have contact with a confirmed case, the CDC said Tuesday.

The big picture: COVID-19 has killed more than 2,700 people and infected over 81,000 others. By Wednesday morning, South Korea had the most cases outside China, with 1,261 infections. Europe's biggest outbreak is in Italy, where 374 cases have been confirmed.

Go deeperArrowUpdated 43 mins ago - Health

Trump assigns Pence to lead U.S. coronavirus response

Photo: ANDREW CABALLERO-REYNOLDS/AFP via Getty Images

President Trump announced at a press briefing Wednesday evening that he'll be putting Vice President Mike Pence in charge of leading the administration's response to the coronavirus.

The big picture: In the wake of a market sell-off and warnings from health officials that there's a real threat of the coronavirus spreading in the U.S., Trump sought to reassure the nation and Wall Street that the U.S. is "ready" for whatever comes next.

Go deeperArrowUpdated 2 hours ago - Politics & Policy