Republicans could win midterms by focusing on children with rare diseases

OPINION:

The Food and Drug Administration is the agency charged with, among other things, approving drugs that will save lives. This is especially important for families whose children are suffering from terminal rare diseases.

Prioritizing these children should be an easy call for humans and as regulators. Frankly, it also could give Republicans a much-needed campaign slogan (“Republicans Stand with Kids!”) going into a tough midterm season.

There is only one issue: The FDA is actually holding back treatments in ways that make no scientific sense but could let children die by the end of the year.

Republicans certainly need an issue of concern to every American to get behind, particularly when it comes to health care. Right now, the Department of Health and Human Services is facing a split-screen problem entirely of its own making, and it could be a major turnoff for voters.

On one side of that screen are initiatives that have earned rare bipartisan approval. Efforts to improve the nation’s food supply and elevate awareness around nutrition resonate with voters concerned about chronic disease, health care costs and long-term economic sustainability.

Policies aimed at reducing dependence on low-nutrient foods signal a serious commitment to prevention and personal responsibility.

Politically and substantively, these are wins, but that is only the happy half of a complex story.

The other narrative gaining traction in the media, on Capitol Hill and among patient communities focuses on the FDA and what many families see as a systemic failure to act with urgency on treatments for rare diseases.

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For parents confronting diagnoses such as Huntington’s disease, Duchenne muscular dystrophy or Sanfilippo syndrome, time is a luxury they cannot afford. Every month without access to new therapies can mean irreversible decline.

The perception taking hold is that regulatory timelines are fundamentally misaligned with the realities these families face.

Families of children with rare diseases know that scientists are hard at work inventing life-changing drugs, but they also fear that regulators are busy getting in the way of their approval.

High-profile delays of drugs for conditions such as Huntington’s and Sanfilippo have caused negative perceptions to harden into frustration and, increasingly, political pressure. Parents and families have begun to believe the FDA is not simply cautious but also indifferent or obstructive.

Fair or not, that sentiment is politically combustible.

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Children with rare diseases do not vote, but their parents, relatives, neighbors, caregivers and sympathizers most certainly do — millions of them.

When voters believe that government institutions stand between their children and potential treatments, the issue moves quickly from a regulatory debate to one that offers a genuine electoral advantage.

Rare disease families are deeply motivated and will spread the word about their backers. Members of Congress who stand with them will find support at town halls, on social media and in the voting booth.

Republicans already have an opening. Sen. Rick Scott, Florida Republican, and Sen. Ron Johnson, Wisconsin Republican, are promoting bipartisan solutions to the problems plaguing the FDA. They are championing children’s lives, something every single American can get behind.

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For a party facing a difficult reelection environment, that is not a trivial risk. Trust in public health institutions has already been strained by pandemic controversies, supply chain disruptions and rising health care costs. Pointing to real support for youngsters with terminal illnesses is the easy call.

The path forward is simple: The FDA must prioritize children’s lives. Congress needs to be part of making that happen, and everyone needs to make sure children come first.

Getting this right would deliver both moral and political dividends. Helping children with rare diseases is a unifying cause that reminds voters that government can still act with moral purpose.

• Paul Teller is president of Teller Strategies. He served all four years in the White House of the Trump-Pence administration.

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