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Photo: Al Drago/CQ Roll Call

The FDA has approved the drug Givlaari, made by Alnylam Pharmaceuticals, for adults who have acute hepatic porphyria, a genetic disorder that leads to severe abdominal pain and affects just 1 in 25,000 people.

The big picture: Alnylam set Givlaari's net price, after discounts to insurers, at $442,000 per year, or about $39,000 per vial. It's a lofty price tag, but those prices are common among drugs that use new scientific techniques to treat very rare diseases.

What they're saying: Alnylam CEO John Maraganore told Bloomberg that the company will adjust the drug's price based on its results.

  • "If patients respond well, we will be fully paid. If they don't have an acceptable response to the drug, we will give a rebate back to the payer," he said.

Go deeper:

Go deeper

Biden to sign voting rights order to mark "Bloody Sunday" anniversary

President Biden will sign an executive order today, on the 56th anniversary of "Bloody Sunday," meant to promote voting rights, according to an administration official.

Why it matters: The executive order comes as Democrats face an uphill battle to pass a sweeping election bill meant, in part, to combat a growing number of proposals introduced by Republicans at the state level that would restrict voter access.

Updated 4 hours ago - World

In photos: Pope Francis spreads message of peace on first trip to Iraq

Pope Francis waving as he arrives near the ruins of the Syriac Catholic Church of the Immaculate Conception (al-Tahira-l-Kubra), in the old city of Iraq's northern Mosul on March 7. Photo: Vincenzo Pinto/AFP via Getty Images

Pope Francis was on Sunday visiting areas of northern Iraq once held by Islamic State militants.

Why it matters: This is the first-ever papal trip to Iraq. The purpose of Francis' four-day visit is largely intended to reassure the country's Christian minority, who were violently persecuted by ISIS, which controlled the region from 2014-2017.

Cuomo faces fresh misconduct allegations from former aides

New York Gov. Andrew Cuomo during a February press conference in New York City. Photo: Seth Wenig/Pool/AFP via Getty Images

The office of New York Gov. Andrew Cuomo (D) was on Saturday facing fresh accusations of misconduct against his staff, including further allegations of inappropriate behavior against two more women. His office denies the claims.

Driving the news: The Washington Post reported Cuomo allegedly embraced an aide when he led the U.S. Department of Housing and Urban Development and that two male staffers who worked for him in the governor's office accused him of routinely berating them "with explicit language."