RELEASE: “If the Affordable Care Act Goes Away, I Will Be Uninsurable”: Iowa Mother Is the Face of Trump Administration’s Broken Health Care Promises

Washington, D.C. — As the Trump administration continues to threaten Americans’ health care in the federal courts—and with former Big Pharma lobbyist Alex Azar at the helm of the U.S. Department of Health and Human Services (HHS)—the Center for American Progress Action Fund is releasing a new video in a social media campaign to educate Americans on what’s at stake. 

The campaign will tell stories of Americans including Rebecca Hovde, a mother from Wellman, Iowa, who was diagnosed with a rare automuscular disorder, Lambert-Eaton myasthenic syndrome (LEMS), which weakens the body’s voluntary muscles. Since LEMS is considered a preexisting condition, Hovde says she worries that if the Trump administration is successful in its efforts to dismantle the Affordable Care Act (ACA), she will no longer be able to afford the skyrocketing costs of her lifesaving medication.

“If the Affordable Care Act goes away, I will be uninsurable. I will not be able to afford my medications. Essentially, I will die or end up with ridiculous bills that I’ll never be able to pay in my lifetime,” Hovde says. 

According to Hovde, she was able to treat her disorder with a drug called 3,4-diaminopyridine (3,4-DAP), which was manufactured by Jacobus Pharmaceutical Co., a family-operated pharmaceutical company based in New Jersey. Because the medication only costs 10 cents per dose to manufacture, Jacobus offered 3,4-DAP to patients free of charge under the Food and Drug Administration’s (FDA) compassionate use provision, which grants patients access to investigational devices or medicines that are currently in clinical trials or that have not yet been approved or cleared by the FDA for patient use.

Hovde says that changed when the pharmaceutical company Catalyst Pharmaceuticals received orphan designation for 3,4-DAP, giving the company exclusive marketing and development rights to recover the costs of researching and developing a treatment for LEMS. Once the FDA approved the version produced by Catalyst, the drug cost soared to an astronomical $230 per pill; the company announced that it planned to charge $375,000 annually for the medication. Fortunately, Hovde’s insurance, which she obtained through the ACA, covered the costs of Hovde’s lifesaving medication, even at the higher price. 

Hovde says that because of the Trump administration breaking its promise to address prescription drug price gouging and its constant attacks to the ACA, she and the 20 million Americans covered under the law, as well as another 135 million Americans living with preexisting conditions, are at the mercy of companies that put profits before patients’ lives. Despite the law’s many benefits, the Trump administration has focused on undoing it—either through congressional action or by toppling the law in the courts. President Donald Trump also promised to come up with a replacement plan if the ACA is repealed or overturned but has failed to create an alternative plan. 

Trump promised that his administration would work to combat the issue of prescription drug price gouging, but in reality, the Trump administration’s tax bill granted billions of dollars in tax breaks to Big Pharma companies. It even allowed top-performing companies such as HHS Secretary Azar’s former pharmaceutical company, Eli Lilly and Co., to zero out their federal income taxes as drug prices continued to soar. Hovde says that she cannot trust the Trump administration’s promises to make Washington work for the people. 

“Trump said he was going to drain the swamp, right? How can you appoint Alex Azar, someone who’s a lobbyist, who’s on the side of making profits for CEOs of insurance companies?” Hovde says.

Secretary Azar came under intense scrutiny during his Senate confirmation process for his role in drug pricing while at Eli Lilly. During Azar’s tenure at the pharmaceutical giant, the company raised the price of some lifesaving medications by as much as 300 percent. Hovde says that President Trump nominating a former Big Pharma executive with Azar’s record has led many, including herself, to question if the Trump administration can be trusted to address the problem of prescription drug price gouging.

Hovde concludes: “Do I trust the president? I don’t. And that’s very sad. I don’t trust what he says, because he could change his mind in an hour or two.” 

For more information on this topic or to speak with an expert, please contact Freedom Alexander Murphy at fmurphy.af@americanprogressaction.org or 202-796-9712.