Trump administration raises questions for rare-disease drugmakers

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Photo credit: Gage Skidmore/Creative Commons

Nobody knows what the future holds for the Affordable Care Act under the Trump administration and an emboldened Republican Congress.

But in advance of changes that could leave any number of patients financially vulnerable, marketers and brand stewards in the realms of rare and orphan diseases might want to prepare themselves for the worst-case scenario: sharply curtailed protections for patients with pre-existing conditions.

The passage of the ACA in 2010 prevents insurers from refusing to cover patients with pre-existing conditions. They also can't charge those patients more. That provision, along with one that allows adults younger than 26 years old to stay on the same plan as their parents, are two of the most popular provisions of the healthcare reform law.

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The provision about pre-existing conditions would seem to be among the most important conclusions to be drawn from a report released in mid-December by the Henry J. Kaiser Family Foundation. Per the foundation's analysis, at least 52 million non-elderly adult Americans suffer from a health issue that, “under medical underwriting practices used in the vast majority of state individual markets prior to the ACA,” would render them uninsurable.

Some areas would potentially be affected more than others — patients residing in southern states would feel the most pain financially — but the potential elimination of the ACA all but guarantees a significant number of patients receiving treatment for a rare disease will lose their coverage.

Trump has said he would keep the provision even if the ACA is repealed. However, in 2015, Tom Price, his nominee for secretary of Health and Human Services, introduced legislation that would water down the provision, by allowing insurers to choose not to cover people with pre-existing conditions if an individual hasn't kept up with their premiums.

What this means for marketers in the orphan space is unclear, and that's before the indeterminate time frame for changes. As a result, at least one top pharma executive believes he and his peers must go out of their way to impress upon marketing and brand teams the need to maintain a focus on the basics — not only access and reimbursement, but also interacting with, and where necessary building up, the patient communities.

CSL Limited CEO and managing director Paul Perreault, whose company markets a host of blood-disorder products, notes that 75% of the world's hemophilia population is either undertreated or not treated at all — and that percentage rises when taking into account rarer disorders and conditions.

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As a result, he expects the pharma industry's newfound thrust toward patient-centricity will remain essential in the uncertain months ahead.

By way of example, Perreault references CSL's 150 plasma-collection centers across the U.S. and Europe, all of which participate in an adopt-a-patient program.

“Every center identifies a patient who comes in every month to thank donors and share personal stories about treatment or whatever else with them. ‘Vein to vein' is what we call it,” Perreault said. “It's something we developed over 10 years, and it's not something you can replace overnight. You can't stop paying attention to programs and initiatives like that.”

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