Left in Limbo: When Insurance Disrupts a Child’s Fight Against Cancer
My 14-year nephew was recently diagnosed with synovial sarcoma, a rare and malignant soft tissue tumor. He is blessed to be receiving world-class treatment at Duke by a team of compassionate and highly skilled physicians. After nine surgeries and skin grafting procedures on his leg, he’s cancer free and on the road to recovery. He will require close follow-up with his team every three months for the next five years. Except he may need to find a new one…
My sister recently received letters from Duke and UnitedHealthcare (UHC) warning if they cannot break their contract renegotiation impasse, Duke will be out of network effective November 1st. Duke advised her to “call or e-mail United” (good luck with that!) or “talk to her employer”. Even worse was UHC’s paternalist memo, telling her she “deserves” access to affordable care and providing her with a set of useless FAQs.
On left: Letter from Duke (10/15/24); On right: Message from UHC (10/16/24)
This is wrong on many levels:
Duke and UHC’s inability to negotiate effectively is no excuse to triangulate my sister into the dispute to mediate or gain an upper hand. It’s traumatic and rarely an effective strategy for resolving conflict between two parties. She is not a lawyer, judge, or mediator - she is a mother of a child with cancer.
Both parties have profound financial conflicts of interest, none of which work in my nephew’s favor. Duke is happy to scuttle a payer notorious for being stingy and abrasive. UHC would delight to have complex, high-cost members like my nephew come off their books (who they know will invariably go to great lengths to stay with their current doctors and switch carriers) and not to pay exorbitant rates.
Providing one month’s notice for a contract that has likely been in place for five years is reprehensible. This is hardly enough time to establish care with a new PCP, let alone find a new pediatric oncology team.
Nobody should interpret “continuity of care requirements”, which are mandated by the “No Surprises Act” and designed to protect individuals whose provider ceases to be in-network, as the solution to this problem. Currently the process is very complex for patients to navigate (my sister has a PhD but is struggling with all the forms and phone calls, on top of her full time job), the criteria are ultimately subject to insurer interpretation (e.g. their definition of an “acute” illness), the “benefit” is time-limited (up to 90 days), and the process is also confusing for clinicians. My nephew would likely not even qualify since he is not undergoing active chemotherapy (i.e. his illness is not “acute”).
The real-world options for people like my nephew and sister are challenging. He can start over at another certified pediatric sarcoma center in UHC’s network (there aren’t many), find an ACA plan that includes Duke (very few) and pay out of pocket, or my sister can leave a job she loves and find another one that has insurance Duke will take.
Bottom line, Duke and UHC need to DO THEIR JOB and figure out a solution that puts people and their health care first. I’m certain one exists that enables both entities to remain lucrative without abandoning their patients/members.
We also need more effective regulation to ensure that patients are insulated from the fallout from these types of disputes. This is an all-too-common occurrence and it’s clear that current stakeholders do not feel sufficient accountability to handle them in a way that prioritizes patients over profits.
If continuity of care requirements had more teeth, it would provide better protection for patients and act as a deterrent for insurers to cancel long-standing contracts. My recommendations are to 1) increase the window of protection to at least 180 days (ideally one year) 2) specify a minimum notification period to members for potential non-renewal of contracts (90 day minimum) 3) streamline the process for patients to apply for determination (versus being asked to complete mountains of forms for every provider), and 4) accelerate the timeline for continuity of care determinations plus an expedited process for related appeals). Ideally, policy makers, clinical, and insurance executives should do user design and experience testing to better understand how their “solutions” work in real-life.
In the meantime, my sister is talking with her employer to see if she has any other options. And waiting for an update from Duke and UHC. That’s about all she can do.
