Dr. Elizabeth Ames and Dr. Caleb Bupp are deeply committed to their patients. But like so many clinicians today, they’re spending an extraordinary amount of time battling insurance companies instead of practicing medicine.
Between prior authorizations, step therapy requirements, and outright coverage denials, physicians and their teams are buried in paperwork, often at the direct expense of patient care. Time that should be spent listening, diagnosing, and treating is instead consumed by forms, phone calls, and appeals.
Boston Globe reporter Jonathan Saltzman raised the concern and Dr. Ames brought it to my attention. The reporter talks about, a new program rolled out by Blue Cross Blue Shield of Massachusetts. The insurer says the initiative is designed to control rising healthcare costs for its 3 million members, noting that costs have increased by 30 percent since 2021. But, the program specifically targets physicians who bill for the most expensive visits. The reason for the increased expense, which is discussed in our podcast, is because doctors are choosing to spend more time with rare disease patients who have complicated health issues. They need to spend more time with complex medical needs patients than say, someone with a sore throat.
Drs. Ames and Bupp warn that this approach fundamentally misunderstands patient care, particularly for those with complex or rare conditions. “These patients don’t need less time; they need more” says Dr. Ames. Physicians argue that policies like this risk rushed appointments, strained doctor/patient relationships, and poorer outcomes. Nowhere is this more concerning than in the rare disease community, where delays and denials can be devastating.
Dr. Elizabeth Ames and Dr. Caleb Bupp talk about what this looks like in real life. As pediatric geneticists, they see firsthand how insurance barriers impact families already navigating diagnostic odysseys, uncertainty, and fear. Their work sits at the intersection of cutting-edge science and deeply human stories, and insurance interference often disrupts both. Dr. Ames, “Usually we get faxes saying, this has been denied and we start working on it. But the family gets a letter that the drug they need, the process is delayed by a “no”. We try and have good communication and say, “hey, we got this denial,” we’re working on it. But I think it’s deaths by a thousand cuts for the family. Families take the denial as, “I’m not worth of coverage, and that’s really hard”. Dr. Bupp says they have had to hire genetic counselors, a job that didn’t exist even 5 years ago, “We have a job description in our organization for it now because of the complexities that come with trying to unravel these insurance situations”.
We should also note that Dr. Ames, Dr. Bupp, and I all serve on the Rare Disease Advisory Council (RDAC) in Michigan. “I think rare disease advocacy, there is power in numbers. One person can be a huge difference maker, but it’s not one plus one equals two. It really exponentially grows, and I think with things like rare disease advisory councils, that gives you a better connection within your state, for state government and for advocacy. And I also think, or I hope, that it gives a place for an individual to plug in and that can then magnify and amplify. their voice so that they’re not alone”. Many states have RDAC’s, You can see if your state has an RDAC. For more on the Michigan RDAC
In this article and in the podcast we are not speaking on behalf of the council, but it’s important to understand why bodies like RDAC exist in the first place. Michigan is home to approximately one million people living with rare diseases, and the RDAC was created to ensure their voices, and experiences help shape policy. RDAC meetings are open to the public, and anyone in Michigan can participate and offer public comment. We hope you join our meetings via zoom (sometimes hybrid).
This conversation isn’t just about insurance policies. It’s about time, trust, and whether our healthcare system truly serves patients, especially those with the most complex needs. Speak up, share your story. Advocate. Make a difference, Mold the future, for future generations.
To look at the Everylife Diagnosis Odyssey https://everylifefoundation.org/delayed-diagnosis-study/ discussed in the podcast. Everylife impact of diagnosis: https://everylifefoundation.org/burden-study/
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