For Families
Insurance denial. Missing records. A bill that doesn’t add up. Here’s what to send.
Four ready-to-use documents: an appeal letter, a records request, a cost tracker, and a directory of who else can help.
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Four documents, ready to use. Delivered to your inbox.
What's inside
- Insurance Appeal Letter: a fillable draft for the most common denial reason, "not medically necessary," with a section on what actually strengthens an appeal.
- Medical Records Request Letter: two versions, one to send records to a new provider and one to request your own copy, both built around your HIPAA rights as a parent.
- Treatment Cost Worksheet: a fillable table to track spending as it happens, plus a monthly summary built for handing to a hospital social worker.
- Financial Assistance Directory: national organizations that help with treatment costs, travel, lodging, and appeals, organized by what you need.
The data behind it
Source: Zheng D, et al., presented at the American Society of Hematology (ASH) 2025 Annual Meeting; Dana-Farber ALL 16-001 trial, Children's Hospital of Philadelphia. Conference-presented findings, not yet confirmed in a peer-reviewed journal publication at time of writing.
Frequently asked questions
What if my insurance already denied the claim once?
Most denials can be appealed, and a first denial is common, not final. The appeal letter in this toolkit is built around the most frequent denial reason, "not medically necessary," and includes a section on what actually strengthens an appeal before you resend it.
Do I have a legal right to my child's medical records?
Yes. As a parent or guardian, you generally have the right to request and receive your child's medical records under HIPAA. The records request letter in this toolkit includes both versions you may need: sending records to a new provider, and requesting your own copy.
What counts as a "treatment cost" worth tracking?
More than most families expect: co-pays, deductibles, travel and lodging for appointments, parking, lost wages from missed work, and incidental costs during hospital stays. The cost worksheet is built to capture all of it, with a monthly summary formatted for handing to a hospital social worker.
Is financial help available beyond what my insurance covers?
Often, yes. National organizations exist specifically to help with treatment costs, travel, lodging, and the appeals process itself. The assistance directory in this toolkit organizes them by what you need, so you're not searching from scratch while also managing a diagnosis.
Does my employer match donations to The Bardo Foundation?
Many employers match their employees’ charitable gifts dollar-for-dollar, and some go further: turning a $100 gift into $200 or more at no extra cost to you. If you’re a donor, it’s worth checking whether your employer’s program applies.
Related guides
- If you're earlier in the process, the family roadmap for the first 30 days after diagnosis covers the decisions that come before this toolkit is usually needed.
- Considering a clinical trial alongside standard treatment? the osteosarcoma clinical trial checklist covers what to ask your oncology team.
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