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Week in Review: It Should Not Be Secret.

August 15, 2020

What do we know about the federal government’s process for granting patients special access to yet-to-be approved medications? It’s a notoriously opaque one—and that’s not conducive to provide truly patient-centric care.

That’s why earlier this week, the Goldwater Institute—together with attorneys from the law firm Frier Levitt—filed a lawsuit against the U.S. Food and Drug Administration (FDA), demanding that it make this information public. In light of the ongoing COVID-19 pandemic, and because many coronavirus patients are receiving medications through the FDA’s expanded access program, public access to this information is more important than ever—yet the FDA has repeatedly ignored the Goldwater Institute’s attempt to gain public information about the program. Despite the Institute’s numerous letters, administrative appeals, and other attempts to work with the agency, the FDA has delayed making this information public, in plain violation of the law.

Patients in need of lifesaving medications deserve transparency regarding how those treatments are approved—and the Goldwater Institute is working to shine a light on that process. Read more our new lawsuit on In Defense of Liberty.

Chicago Should Put Out the Welcome Mat for Home-Sharing

Many Chicago homeowners want to offer their private homes to overnight guests: It’s a good way to earn some extra money. But a city ordinance is putting prohibitions on this right—prohibitions that can hurt the economy and violate the constitutional rights of responsible homeowners.

The Goldwater Institute, along with the Liberty Justice Center, is challenging these unfair, confusing, and unconstitutional restrictions on home-sharing in Chicago—including the city’s discriminatory taxes on short-term rentals. This past week, the Cook County Circuit Court heard arguments from both sides. In a new post at In Defense of Liberty, Jacob Huebert, Goldwater’s lawyer on the case, talks about this week’s argument—and what may be coming next.

In Chicago, anyone staying at a hotel must pay the city’s 4.5% hotel tax. But if you book a stay through Airbnb or a similar home-sharing platform, you’ll still have to pay the hotel tax—and you’ll have to pay additional surcharges that hotel guests don’t have to pay. “There’s simply no reason why home-sharing guests should have to pay more than guests at hotels,” Huebert writes. “The service the guests at both types of accommodations receive is the same—namely, nightly lodging—and therefore, the guests should be taxed the same.”

Chicago isn’t the only place where Goldwater is fighting to protect this essential property right. Just last month, the Goldwater Institute won a major victory before the Florida Third District Court of Appeal, which ruled that Miami Beach’s steep fines for violations of its anti-home-sharing ordinance were unconstitutional.

America’s Young Healthcare Hero

Duchenne muscular dystrophy (DMD) involves enormous patient suffering—loss of ambulation, loss of respiratory function, and loss of ability to complete routine daily functions—and there are no cures and only limited treatments that may slow the progression of this cruel disease. But this week, the FDA granted provisional approval through an accelerated approval process for one DMD treatment, Viltepso (viltolarsen). And Americans can thank young Jordan McLinn for that.

Viltepso is for patients who have a confirmed mutation of the DMD gene shared by about 8 percent of DMD patients. Jordan is one of them—and he has already benefited from the drug in a clinical trial. He and his mom, Laura, have been strong advocates for helping terminal patients access investigational treatments, through the Goldwater Institute’s Right to Try policy. In 2018, Goldwater honored Jordan and Laura for their efforts with the Institute’s first-ever Freedom Award in. The McLinns’ courage and tireless efforts—while facing the management of Jordan’s illness, as well as business and family obligations—were instrumental in allowing patients to obtain access to investigational treatments.

You can read more about Jordan’s story below—it’s a testament to the importance of giving patients more treatment options and more control over their healthcare decisions.

Join Us for Our 2020 Virtual Annual Dinner with Special Guest Dennis Prager

You’re invited to join us for the Goldwater Institute’s 2020 “Virtual Annual Dinner” on Friday October 16, 2020, with special guest Dennis Prager – one of America’s most well-known and respected conservative talk show hosts and writers.

This exclusive, invitation-only event will be streamed live online and will feature critical insights from Dennis Prager about America’s future as we sit on the precipice of the 2020 elections.

Click here to get your tickets today!



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