It's been a month since DRG's Managed Markets Summit, but there's a conversation I can't forget: if and when ACOs will affect the rare/orphan drug landscape.

The question was posed by a conference attendee between sessions. As my new friend and I talked through pulmonary hypertension and the rather busy market space for such a rare condition, my short answer was that the immediate impact of ACOs on companies like his would be a longer time coming. And that the effect was likely to be more indirect than direct. Why?

  • ACOs are about population health management. They need a critical mass of people, particularly if the ACO involves risk, to generate better outcomes and savings. Rare and orphan diseases don't fit that description.
  • Additionally, ACOs are founded in a primary-care, medical home model. For diseases like PH, the family doctor isn't coordinating care. These patients are receiving ongoing care from sub-sub-specialists.
  • Additionally, health plan reimbursement is generally not something these manufacturers have to fight for. Health plans don't want to get rare and orphan disease reimbursement wrong. There is prior authorization and some step edits, but manufacturers don't see that as a problem, at least not the one I spoke with.

So what's the takeaway? Payers need to gain more experience in risk-sharing/shifting with providers via the ACO space. They want to get that right and achieve baseline success before branching out. With pulmonary hypertension, the earliest possible impact could be diagnoses and treatment for complications alongside conditions like COPD, a disease proving to be one of the low-hanging fruits for ACOs to target for disease management, quality improvement and cost savings  at least in theory.

What are your thoughts on rare and orphan diseases in relation to ACOs Join the conversation on Twitter.

Follow Laura Beerman on Twitter @LauraBeermanHLI

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