What to Do When Insurance Denies Care

A denial letter arriving in the middle of cancer treatment is frightening. It is meant to feel final. It usually is not.

There is a set process for challenging coverage decisions. Most of it has legal deadlines attached. And a meaningful share of denials are overturned when people push.

What follows is how that process generally works, and who can help you run it. It is not legal advice. Nobody can tell you in advance how your appeal will go.

Before anything else, work out what was actually denied and on what grounds. The reason decides the route.

Common reasons look very different from each other:

• A clerical or coding error — wrong code, missing referral, out-of-date policy number. This is often fixed with a phone call and never needs a formal appeal.
• "Not medically necessary" is a clinical judgement. You challenge it with clinical evidence.
• "Experimental or investigational" is common with newer cancer drugs and off-label use. It needs published evidence and specialist letters.
• "Out of network" may be arguable if no in-network provider can deliver the treatment.
• "Prior authorization not obtained" is a process failure. The provider's office often has to fix it.

While you are reading, note the deadlines and write them on a calendar. Then start a file. Keep every letter. Log the date and time of every call, who you spoke to, and what they said. This record is the single most useful thing you will have if the dispute drags on.

Ask your insurer in writing for the full clinical criteria they used to make the decision. Ask your doctor's office for the complete records supporting the request.

Keep treating this as a process, not an argument. The people on the phone did not make the decision.

Many insurers offer a peer-to-peer review, either before or alongside a formal appeal. Your oncologist speaks directly with the insurer's medical reviewer about your case.

It is quick and informal, and it sometimes solves the problem outright. A specialist explaining why a particular regimen fits a particular tumor often lands better than a paper file.

Ask your oncologist's office whether they will request one. Ask whether the reviewer will be an oncologist. It helps to give the office anything that strengthens the case: relevant guidelines, your pathology and staging information, and prior treatments with the reasons they failed or were unsuitable.

A peer-to-peer is not a substitute for filing your appeal on time. File anyway, and let the peer-to-peer run alongside it.

An internal appeal is a formal request that the insurance company review its own decision properly.

HealthCare.gov sets out the rules for most non-grandfathered private plans. You must file your internal appeal within 180 days of receiving notice that your claim was denied. The insurer must complete the internal appeal within 30 days if the service has not yet been provided. If you have already received the service, they have 60 days.

There is a faster track. According to HealthCare.gov, you can file an expedited appeal if the standard timeline would seriously jeopardize your life or your ability to regain maximum function. In cancer, that is often the situation. Waiting a month to start treatment is not a neutral delay.

Ask your oncologist to state plainly, in writing, why the delay is medically unsafe. HealthCare.gov states that a final decision on an expedited appeal must come as quickly as your medical condition requires and at least within 4 business days. Written confirmation must follow a verbal decision within 48 hours.

What to put in the appeal:

• A cover letter identifying the member, the claim, the denial date and exactly what you want approved.
• A letter of medical necessity from your oncologist. It should explain your diagnosis, what has already been tried, and why this treatment specifically.
• Supporting clinical evidence. Include relevant published guidelines, and studies where the denial says "experimental".
• The relevant medical records, pathology and imaging reports.
• A request for expedited handling, with the clinical reason, if delay is dangerous.
• Your own short statement about the practical consequences of the denial.
• Copies of everything, sent by a method that gives you proof of delivery.

If the internal appeal fails, an independent party outside the insurance company can review the decision.

HealthCare.gov describes the process. You must file a written request for external review within four months after the date you receive the final determination from your insurer. Standard external reviews are decided as soon as possible and no later than 45 days after the request is received. Expedited external reviews are decided no later than 72 hours, or sooner depending on medical urgency.

Two details matter here.

First, HealthCare.gov states that your insurer is required by law to accept the external reviewer's decision. This is the point at which the insurance company no longer gets the last word.

Second, the cost. HealthCare.gov says there is no charge under the HHS-administered federal external review process. Where an insurer uses an independent review organization or a state process, any charge cannot be more than $25 per external review.

These timelines apply to most private and Marketplace plans. They do not describe every situation. Medicare, Medicaid, VA coverage, and some self-funded employer plans run their own appeal systems, with different names, stages and deadlines. So check which system yours falls under before you rely on any particular date.

You should not do this alone, and you do not have to.

• Your cancer center almost certainly has oncology social workers, financial navigators or patient advocates who handle denials regularly. Ask for them by name.
• Your doctor's office has staff whose job is prior authorization and appeals.
• Every state has a Department of Insurance that regulates insurers and takes consumer complaints.
• People on Medicare can get free counseling through their State Health Insurance Assistance Program.
• Some states run consumer assistance programs for other coverage.
• Nonprofit organizations do this work at no cost. They are named with their phone numbers at the foot of this page, rather than left for you to search for.

Specialist attorneys also handle health coverage disputes. Some take these cases on contingency.

If the drug itself is the issue, ask the manufacturer about patient assistance programs. Also ask your team whether a clinical trial might give you access to the treatment another way.

Appeals are slow, repetitive and exhausting, at a time when you have nothing spare. Some of them fail. But the deadlines are real, the external review is genuinely independent, and denials do get reversed. Filing costs you paperwork. Not filing closes the option entirely. If you need help finding someone to take this on with you, start with our support page.

• HealthCare.gov — Internal Appeals
• HealthCare.gov — External Review
• HealthCare.gov — Appealing a Health Plan Decision