Today’s newsletter is co-authored with Tania Rallo, Co-founder of Converus.AI. Over the next few issues, you will see more of her. Intro to her and her story coming in another issue.

This newsletter explains how American health insurance actually works, using a cast of dog characters who walk us through it. You do not need to have read any earlier issues to follow today's story, but if you want the background later, here is what we've covered so far:

Everything you need to follow today is in today's story. The links above are there if you want to go deeper later.

Margaret is a corgi in her mid-fifties. She’s the kind of dog who keeps a tidy kitchen and a folder for every important piece of paper that has ever come into her house. She has one grown son named Biscuit, who shows up most Sundays for lunch.

A few weeks ago, Margaret went in for her annual physical. Her primary care doctor is Dr. Singh, a gray standard poodle in a white coat who has been seeing Margaret for almost a decade.

Margaret's mother died of ovarian cancer at 58. Her aunt had breast cancer at 47. None of that is in this story for color. All of it is the reason Dr. Singh ran Margaret through a short family history questionnaire (the kind doctors use to figure out if a patient is at higher-than-average risk for certain cancers) and why Margaret scored high. Dr. Singh referred her to a genetic counselor.

The genetic counselor recommended what's called a hereditary cancer panel. It is a single lab test that looks at a small group of genes, including two famous ones called BRCA1 and BRCA2 (breast cancer genes), to see if Margaret carries any inherited mutations that would meaningfully change what her doctors recommend next: more frequent screenings, and possibly preventive medication. In some cases, preventive surgery before cancer ever shows up.

The lab submitted the claim to Margaret's insurance plan, BHC. A week later, a letter arrived in Margaret's mailbox.

The denial letter is one page long and the reason for the denial sits in a single line halfway down:

"Not medically necessary under current plan guidelines."

That is the entire explanation. No mention of Margaret's family history. No mention of the risk assessment Dr. Singh did. No reference to which guideline. One sentence, the matter closed, with a phone number at the bottom in case Margaret has questions.

If Margaret is like most people, she does one of three things.

That third option is the kindest thing anyone says to Margaret all week. It is also the moment when something important quietly slips out of her hands.

Three reasons:

Once you see those three reasons stacked, the next number stops being surprising. Of the roughly 85 million in-network claims that ACA marketplace insurers denied in 2024, fewer than 1% were appealed. Of the ones that were appealed, 34% got overturned (KFF, March 2026).

It gets sharper. In Medicare Advantage, which is private insurance for people over 65, the most recent KFF analysis found that 80.7% of appealed prior authorization denials were overturned in 2024. Eight in ten. And only 11.5% of patients appealed.

Read those two numbers together. Eight out of ten patients who push back, win. Nine out of ten don't push back at all.

The most honest answer is that nobody told them they could. And when someone did, that someone was usually their doctor's office or their lab, and they used a verb that quietly transferred something away. "We'll handle it."

This is the part of the issue that, if you remember nothing else, is worth remembering.

The Affordable Care Act, in the regulations at 45 CFR 147.136, gives every patient on a non-grandfathered health plan two specific rights when their claim is denied:

Those rights belong to the patient. Not the provider. The HHS-administered external review process is available “at no cost to the health insurance plan, the consumer, or a consumer’s authorized representative.” Consumer. Or the consumer’s chosen representative. Not a provider acting like it owns the appeal.

A provider can run an appeal on a patient's behalf, but only in two ways.

In both cases the provider is borrowing the patient's rights. They are standing in the patient's shoes. The shoes still belong to the patient.

Here is why that matters: If a provider tries to fight a denied claim in federal court under ERISA, the case may get thrown out before the court ever looks at whether the denial was fair. Why? Because ERISA usually gives the right to sue to the patient, not automatically to the doctor, lab, or clinic.

So the insurer can argue: “This provider is not the patient. The patient did not bring this lawsuit. Therefore, the provider has no right to sue.” The provider may only be able to sue if the patient clearly gave them that right through a valid assignment or authorization. But even then, some health plans have anti-assignment language that blocks providers from taking over those rights. When courts agree with the insurer, the provider loses on a technical legal issue before anyone even discusses the actual denial. The patient may never know the case happened, and the coverage question never gets decided.

When the patient runs the appeal themselves, or signs a clean authorized representative form for that specific appeal, none of those standing fights apply. The federal rights are theirs. They cannot be argued away by an insurer's contract clause. They are sitting in the patient's hand the whole time.

This is the spine of the whole issue. The US government gave the appeal rights to patients because the patient is the only party in the system whose rights cannot be argued away.

To be very clear, this is not a critique of doctors. Doctors offering to handle appeals are being helpful, and most of them have been doing it the same way for years because the workflow that grew up around denials runs on assignment of benefits forms. The structural wrinkle (that patient-led appeals have stronger legal standing) is rarely taught in medical school or RCM training. The point of this issue is not that your doctor is doing something wrong.

These are not loose promises. Each one is a specific right encoded in federal regulation at 45 CFR 147.136:

You can ask your insurance company, in writing and for free, to explain exactly what medical reasoning they used to deny your claim. Not the one-line summary. The full explanation. What guideline did they apply. What did they conclude about your specific situation. What evidence did they consider. Federal regulation requires the insurance company to give you this on request, at no cost.

In plain English: "Send me, in writing, the specific medical reasoning behind this denial." That's the whole request.

You have the right to receive every document, record, internal note, and piece of information the insurance company looked at or generated when it decided your claim. The medical reviewer's summary. The exact version of the policy they applied. Any internal communications about your case. Free, by request, in writing.

This is the document set that lets you build a real appeal. Most patients never ask for it. Most who do ask, get it.

Insurance companies often deny claims based on internal policies and clinical criteria documents that are not in the summary you got when you enrolled. You have the right to see the actual rulebook. If BHC denied Margaret's test using "criteria for hereditary cancer testing, version 7.3," Margaret has the right to ask for and receive the full version 7.3. The whole document. Free.

Here is why this one is so powerful, in plain English. The US Preventive Services Task Force (the federal panel of medical experts that decides which preventive services are officially recommended) gives a "Grade B" recommendation to genetic risk assessment, genetic counseling, and BRCA testing for women with a family history pattern like Margaret's. Under the ACA, most health plans have to cover preventive services that get an A or B grade from the U.S. Preventive Services Task Force, without charging the patient a copay, coinsurance, or deductible, as long as the service is covered under the rule and provided in-network.

In Margaret's situation, that means a federal panel of medical experts has officially said folks like Margaret should be offered this test, and a federal law says her insurance is supposed to cover it without charging her. When Margaret reads the actual internal rulebook BHC used to deny her, she will likely find one of two things.

So when Margaret reads BHC’s denial rule, she is looking for the gap. Did BHC’s rule contradict the federal recommendation? Or did it add extra hurdles that do not make sense for someone like her? Either one is the foundation of her appeal.

If the insurance company develops new reasoning during your appeal (a new medical reviewer note, a new policy citation, a new piece of evidence they hadn't shared with you), they have to send it to you and give you a chance to respond before they issue a final decision. This is federal regulation. It exists because insurers used to spring new reasons on patients at the last minute, and Congress decided that was unfair.

This is the most important right almost no patient knows about. If your insurance company fails to follow its own appeal process (misses a deadline, doesn't give you a document you asked for, doesn't follow the procedures laid out in the regulations) the federal rules say you are "deemed to have exhausted" the internal appeal. In plain English: their mistake becomes your shortcut. You don't have to keep waiting for them. You can move straight to external review, or in the case of employer plans, straight to federal court.

One honest caveat: the rule has a narrow exception for very minor violations that did not actually hurt your case (the regulation calls these "de minimis"). The exception is meant for genuine clerical slips, not for missed deadlines or refused document requests. If your insurance company missed a real deadline or denied you a document the law says they have to give you, the deemed exhaustion right is yours to use.

Why doesn't anyone tell you this exists? Because the insurance company has no incentive to tell you. The patient who knows about this right is the patient whose missed deadline turns into a legal opening instead of another month of waiting.

Practical version: write down the date your appeal was filed. Write down the date the insurance company is required to respond by (30 days, 60 days, or 72 hours depending on your situation, see below). If they miss it, you have grounds to escalate immediately. Don't wait.

Right 6: Get free professional help.

Every state has either a Consumer Assistance Program or an equivalent state office whose entire job is to help you with insurance problems. They file appeals for free. Many of them will write the appeal letter for you. They are not paid for by your taxes. They are paid for through assessments on the insurance industry itself.

A few examples worth knowing:

Before we get to the mechanics, I want you to meet someone briefly. His name is Otis. He is a French bulldog in a tan blazer who works in member services at BHC, the same insurance company that denied Margaret's test. He has been doing payer-side work for nine years. In future issues, Otis is going to walk us through how decisions actually get made on the other side of the wall. Today his role is small but important.

I asked Otis what changes on his desk when an appeal comes in from the patient directly versus from the doctor's billing office.

Otis is not a villain. He is telling us, plainly, that the system pays more attention when the patient is in the room.

Two stages. Stack them.

Stage 1: Internal appeal: You ask your insurance company to reconsider its own decision. You have 180 days from the denial notice to file. They have to give you a decision within:

Most plans require you to finish this stage before moving to external review.

Stage 2: External review: If your insurance company upholds the denial, you can ask for an independent review organization (IRO) to look at your file. You have at least four months under federal law (often longer under state law) to file. The IRO has 60 days for a standard review and 72 hours for an urgent one. The IRO's decision is binding on your insurance company. If the IRO overturns the denial, the insurance company has to pay. There is no further appeal for them.

The urgent track: If waiting for the standard timeline would seriously jeopardize your health or your ability to recover, you can file the internal appeal and the external review at the same time. You don't have to wait.

She has options. None of them require her to be a lawyer.

The cleanest path: she files the internal appeal herself, using a sample letter (FORCE, a hereditary cancer nonprofit, maintains a free public library of sample appeal letters at brca.info, including ones specifically for BRCA-related denials). She requests her claim file and the specific medical policy BHC used. When she gets the policy, she compares it to the USPSTF recommendation. If there is a gap, her appeal letter cites it directly. If BHC denies her internal appeal, she goes to external review. If she does not want to do any of this alone, she calls her state Consumer Assistance Program, and a trained advocate writes the appeal for her at no cost.

Dr. Singh's office can help her gather the clinical documentation. The genetic counselor can write a strong supporting letter. But the appeal goes in under Margaret's name, in her voice, with her signature. The federal teeth are hers.

If you are a patient, you can stop here, save this issue, and skip to "What to do this week" at the bottom. The rest of this section is for the people who run the appeals process for a living.

The federal appeal rights are a floor. They apply to every non-grandfathered plan in the country. But the floor sits at different heights depending on the plan, and the meaningful differences are worth knowing before you spend a week on the wrong workflow.

ACA marketplace and individual plans: This is the cleanest category for public denial data. KFF’s claims-denial analysis comes largely from marketplace plan data. Internal appeal: usually 180 days to file. External review goes to an independent reviewer, and the decision is binding on the plan.

Fully-insured employer plans: Same 180-day internal appeal window. External review goes to either your state's Department of Insurance process or the federal HHS-administered process if your state doesn't have a qualifying one. The wrinkle here is state variation. Some state Independent Medical Review programs (California, New York, Maryland) are aggressive about overturning denials.

Self-funded ERISA plans: This is the trickiest category, and it covers the majority of US employer coverage. Same 180-day internal appeal window. Federal external review applies, but the plan picks the process (state, IRO contracting, or HHS-administered). The single most important document is the Summary Plan Description, which is the plan's own rulebook. Whatever it says about deadlines, internal review, and appeal procedure is binding. Always get a copy before filing.

Medicare Advantage: The deadline is shorter. You have 60 days to file a reconsideration, not 180. The trade-off is that the appeal process is the most automated in the system. If the internal appeal is upheld, the case auto-forwards to a Qualified Independent Contractor (QIC) without the patient having to file again. And the data is striking: KFF found that 80.7% of appealed prior authorization denials in Medicare Advantage were overturned in 2024.

Traditional Medicare: A different system entirely. Five levels of federal appeal, starting with a 120-day window for redetermination, then reconsideration by a QIC, then administrative law judge, then Medicare Appeals Council, then federal court. If you have a traditional Medicare denial, plan on a longer fight with a different rulebook than the rest of this issue describes.

Medicaid: State-specific. Most states give 60 to 90 days for internal appeal. External review is usually a state fair hearing. Win rates and timelines vary dramatically by state, more than any other category.

For the readers who came here to find the number they need:

If you're running appeals professionally, the single highest-leverage move is to know which of these categories every patient on your panel falls into before a denial ever lands.

The single highest-leverage insight: ERISA self-funded plans are the trickiest, and they cover the majority of US employer coverage. Under ERISA, if a denial goes to federal court, the standard of review is often deferential (the court will only overturn the plan if its decision was arbitrary and capricious), and the record is usually limited to what was filed during the administrative appeal. What you put into the internal appeal is what you get to argue in court. There is no second chance to add evidence.

This is why patient-led appeals on ERISA plans matter more than people realize. The patient has direct standing under ERISA §502(a). Providers without a clean assignment of benefits are sometimes dismissed for lack of standing before the merits ever get heard. If your lab or practice is going to spend time on a high-stakes appeal, the patient's signature on an authorized representative form is the single highest-leverage piece of paper in the file.

A 2025 study in Health Affairs (UCSF researchers, four states with public Independent Medical Review data, 2019-2023) found that 46% of all genetic testing denials that went to independent medical review were overturned. The cancer-specific subset was about 33%, with ovarian cancer at 54.8% and non-small cell lung cancer at 44.3%. Hereditary breast and ovarian cancer panels (Margaret's category) fall in this same range.

Now layer this against the field reality. UCLA Health, in a 2024 publication, reported that about half of patients are denied genetic testing, and only about 25% of appeals are eventually approved at the practice level.

The gap between those numbers (33% to 54.8% at independent review vs. 25% at the practice level) is the story. When labs and practices run the appeal alone, success rates are lower. When the appeal reaches an Independent Medical Review with the patient in the file, success rates jump.

Operational implications for market access teams at genetic testing labs:

For market access leaders: appeal data belongs in contract conversations. If independent reviewers keep overturning a payer’s denials in your test category, that is not just an RCM problem. It is evidence that the payer’s policy may be too restrictive, outdated, or inconsistently applied. That evidence should show up in your next payer meeting.

You have been helping patients with appeals for years, and the workflow has been built around assignment of benefits forms because that is what the system gave you. None of this is a criticism of how you have practiced.

What is changing is the awareness of a structural wrinkle: patient-led appeals carry stronger legal standing than provider-led ones, especially in ERISA cases and in external review. For complex denials (genetic testing, oncology, anything with high financial stakes), the higher-leverage workflow is:

This is more work for your team. It also uses the strongest federal rights in the system instead of borrowing weaker provider-contract rights. The Health Affairs data suggests the difference shows up in the win rate.

The patient-led appeal architecture changes denial management strategy in two ways.

First, your denial recovery rate is being capped by your intake forms. If you are collecting only an assignment of benefits, you have one tool. If you are also collecting authorized representative authorization for appeals, you have two. The second one is sharper.

Second, the highest-value piece of your appeals process is patient engagement, not appeal letter quality. A clean letter under a provider's name has less leverage than a moderately good letter under a patient's name. Reallocating your appeals team's time toward patient communication, education, and signature collection at intake produces higher win rates than incremental letter improvements.

The system rewards the side that uses the strongest rights. The strongest rights live with the patient. Build your workflow to keep the patient in the room.

Four things, no denial required.

Part 2 is the playbook. How Margaret actually writes the appeal, what to put in, what works, what doesn't, when to escalate to external review, and how to use the federal rights together. We'll walk through a real appeal letter line by line and explain why each line is there.

That's it for this issue. Hit reply. I read everything.

— Shivang

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