President Donald Trump named Robert Wilkie, a veteran GOP aide and acting secretary of the Veterans Affairs (VA), to lead the VA; with the power of a pen, HHS Secretary Alex Azar is eager to play the role of a “joyful regulator;” patients with amyotrophic lateral sclerosis (ALS) are finding they are caught between hope, expectations, and insurers that won’t pay for a $145,000 intravenous drug.
President Donald Trump named Robert Wilkie, a veteran GOP aide and acting secretary of the Department of Veterans Affairs (VA), to become the permanent leader of the VA. Wilkie has led the troubled agency as acting chief since March. Ronny Jackson, MD, the president’s former personal physician, withdrew from consideration to lead the VA last month amid scandal over his workplace behavior. As a former adviser to Senator Thom Tillis, R-North Carolina, Wilkie’s confirmation will likely be smoother than Jackson’s, Politico reported.
With the power of a pen, HHS Secretary Alex Azar is eager to play the role of a “joyful regulator,” The New York Times reported over the weekend, in a profile of the president’s front man running the administration’s drug pricing policy. Avalere’s president Dan Mendelson called him the total opposite of his HHS predecessor Tom Price, MD, who focused more on deregulation, whereas Azar looks to see which regulations he can write or rewrite, rather than just cancel.
Patients with amyotrophic lateral sclerosis (ALS), known as Lou Gehrig disease, are finding they are caught between hope, expectations, and insurers that won’t pay for a $145,000 intravenous drug, called Radicava, for their incurable disease, even though it was approved by the FDA last year for all patients. The issue is at what point in the progressive disease the drug will be most effective, a point not fully explored in a small clinical trial, STAT reported. The manufacturer, MT Pharma, says that research expense must be recouped.
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