What people’s searches for a diagnosis tell the agencies that publish the numbers

1. What people ranked heaviest, and what the published figures miss

Reading the register…

The published figures

72 conditions: 17 with a published burden figure (16 federal, 1 only a peer-reviewed analysis: Long COVID), 55 without one. 3 of the 17 have a published annual figure, 2 of them federal; every absence is shown, never filled.

Swipe for all 17

• Long COVID ICD-10-CM U09.9

  A year with it$4,098 (95% interval $1,619 to $6,578) · 2022
  Extra spent in a year over a comparable adult without itResearch figurePeer-reviewed analysis of AHRQ MEPS

• Heart disease

  A year with it$4,900 mean · $660 median · 2022
  Spent in a year treating itGovernment figureAHRQ, MEPS Statistical Brief #562

• Diabetes

  A year with it$5,810 mean · $1,770 median · 2021-2022
  Spent in a year treating itGovernment figureAHRQ, MEPS Statistical Brief #568

• ME/CFS (chronic fatigue syndrome) ICD-10-CM G93.32

  Cost to the countryAbout $18 to $51 billion a yearGovernment figureME/CFS BasicsNCHS Data Brief No. 488
  How many people have itUp to 3.3 million peopleGovernment figureME/CFS BasicsME/CFS Clinical Overview

• Endometriosis ICD-10-CM N80

  How many people have itAt least 11% of womenGovernment figureEndometriosisBuck Louis GM et al.

• Sickle cell disease ICD-10-CM D57

  How many people have itAbout 100,000 peopleGovernment figureData and Statistics on Sickle Cell DiseaseHassell KL

• Lyme disease ICD-10-CM A69.2

  Cost of one case$1,333 mean, $478 median, per reported caseResearch figureHook SA et al. · Emerging Infectious DiseasesHook SA et al. · PubMed Central
  Cost of one case$1,252 mean, $244 median, per reported caseResearch figureHook SA et al. · Emerging Infectious DiseasesHook SA et al. · PubMed Central
  New cases a yearAbout 476,000 people a yearGovernment figureLyme Disease Surveillance and DataKugeler KJ et al.

• Lupus (systemic lupus erythematosus) ICD-10-CM M32

  How many people have itAbout 204,000 peopleGovernment figurePeople with LupusIzmirly PM et al.

• Multiple sclerosis ICD-10-CM G35

  How many people have itNearly 1 million peopleGovernment figureMultiple Sclerosis Research ProgramWallin MT et al.

• Migraine ICD-10-CM G43

  How many people have it15.3 percent of adultsGovernment figureSummary Health StatisticsBurch R

• Inflammatory bowel disease (Crohn’s and ulcerative colitis)

  How many people have it2.4 to 3.1 million peopleGovernment figureIBD Facts and StatsDahlhamer JM et al.

• Interstitial cystitis (bladder pain syndrome) ICD-10-CM N30.1

  How many people have it4 to 12 million peopleGovernment figureDefinition & Facts of Interstitial Cystitis (Bladder Pain Syndrome)Windgassen SS et al.

• Celiac disease ICD-10-CM K90.0

  How many people have itAbout 2 million peopleGovernment figureDefinition & Facts for Celiac DiseaseChoung RS et al.

• Chronic kidney disease ICD-10-CM N18

  How many people have itAbout 35.5 million adultsGovernment figureChronic Kidney Disease BasicsKidney Disease Statistics for the United States

• Epilepsy ICD-10-CM G40

  How many people have itAbout 2.9 million adultsGovernment figureEpilepsy Facts and StatsKobau R et al.

• Autism ICD-10-CM F84.0

  How many people have itAbout 1 in 31 children aged 8Government figureData and Statistics on Autism Spectrum DisorderShaw KA et al.

• Chronic hepatitis C ICD-10-CM B18.2

  How many people have itMore than 2.4 million peopleGovernment figureClinical Overview of Hepatitis CHall EW et al.

No published annual figure we could find: 69 conditions, each named on the page at /policy and in the JSON at /api/policy.

We have not found a published federal annual figure for these 55 conditions. That is a statement about what we could find, not a claim that none exists anywhere. If you know of one, say so and we will price it and cite it. Each figure is shown apart and is never added to anyone’s ledger, and figures of different kinds are not ranked against each other.

What no expenditure file counts

A medical expenditure figure is what was paid for care a person received. [MEPS HC-251 documentation; MEPS survey background] By that definition it cannot hold time spent: visits, waiting, travel; paid work missed; unpaid care from family or friends; care you went without. Those are 4 of the 5 burdens people searching for a diagnosis ranked at the top of this section.

Reading the register…

2. Where published figures are disputed

Every line of a ledger carries a Right and a Wrong. A Wrong is bound to the one published row it is about, so the count can be read by the agency and the file that published the number. Cells under 11 are not shown.

Reading the register…

Each correction names the office, the file and the row, ready for that agency to read.

3. What this could change

Existing federal rules and programs this evidence speaks to. Each says what the evidence shows today and what a larger N would let an agency do.

1. The No Surprises Act good-faith estimate

   Today: Every Wrong a person sends names the one published figure it is about, and may carry what they say they actually paid. With more answers: With enough answers per service, CMS could see which services people most often say cost them far more than the published federal amount, and look there first for estimates that are missing or wrong.

   A person who is uninsured or pays for their own care is owed a good-faith estimate, and a bill at least $400 over it can be disputed through patient-provider dispute resolution.

   Today: Every Wrong a person sends names the one published figure it is about, and may carry what they say they actually paid. The register counts how many carry an amount, by agency and fee schedule; the amounts are never summed or printed.

   With a larger N: With enough answers per service, CMS could see which services people most often say cost them far more than the published federal amount, and look there first for estimates that are missing or wrong.

   • Source 1. 45 CFR 149.620, patient-provider dispute resolution (govinfo, CFR annual edition) (2025).Substantially in excess means, with respect to the total billed charges by a provider or facility, an amount that is at least $400 more than the total amount of expected charges listed on the good faith estimate
   • Source 2. CMS, Dispute a medical bill (2026).Did your provider charge at least $400 more than your good faith estimate? You may be eligible to dispute your bill.

2. Hospital price transparency

   Today: 255 of the 274 published figures in this tool carry the CPT or HCPCS code the federal schedule prices, the same codes a hospital file must list. With more answers: An agency could set what people say they paid beside the hospital’s posted charge and the Medicare amount for the same code, and see where the three part ways, service by service.

   Every hospital must publish its standard charges for all items and services online, in a machine-readable file that carries the billing code for each.

   Today: 255 of the 274 published figures in this tool carry the CPT or HCPCS code the federal schedule prices, the same codes a hospital file must list. A correction is bound to that code and that row.

   With a larger N: An agency could set what people say they paid beside the hospital’s posted charge and the Medicare amount for the same code, and see where the three part ways, service by service.

   • Source 1. 45 CFR 180.50, requirements for making public hospital standard charges (govinfo) (2025).A hospital must establish, update, and make public a list of all standard charges for all items and services online
   • Source 2. CMS, Hospital Price Transparency (2026).As a comprehensive machine-readable file with all items and services

3. NIH RECOVER, the long COVID research initiative

   Today: People searching for a diagnosis rank five burdens, and four of them (time, paid work missed, unpaid care, care gone without) are in no expenditure file. With more answers: A ranking with a large N, read by sex and by age at onset, would give researchers a patient-ranked list of which long COVID burdens to measure.

   Congress gave NIH $1.15 billion in December 2020 to study the long-term effects of COVID-19; NIH runs that work as the RECOVER Initiative.

   Today: People searching for a diagnosis rank five burdens, and four of them (time, paid work missed, unpaid care, care gone without) are in no expenditure file. The ranking is published with its N, and by sex only once a group holds 11 answers.

   With a larger N: A ranking with a large N, read by sex and by age at onset, would give researchers a patient-ranked list of which long COVID burdens to measure.

   • Source 1. RECOVER Initiative, Funding (2026).In December 2020, Congress appropriated $1.15 billion to the NIH to study the long-term effects of COVID-19, including Long COVID.
   • Source 2. Challenges and Opportunities in Long COVID Research, Immunity (peer-reviewed), PMC11210969 (2024).In December 2020, the U.S. Congress directed the NIH to devote $1.15 billion to studying LC

4. HHS on the burden long COVID puts on people

   Today: The ledger prices a person’s own visits and tests from federal files, and counts, apart from any dollar, the care they went without, the time and the work lost. With more answers: HHS could report the burden on individuals as people rank it, beside the published spending figures, instead of spending alone.

   The 2022 presidential memorandum asked HHS to advance understanding of the health and socioeconomic burdens on individuals with long COVID, and HHS names reduced work and economic burden today.

   Today: The ledger prices a person’s own visits and tests from federal files, and counts, apart from any dollar, the care they went without, the time and the work lost.

   With a larger N: HHS could report the burden on individuals as people rank it, beside the published spending figures, instead of spending alone.

   • Source 1. Memorandum on Addressing the Long-Term Effects of COVID-19, Federal Register (FR Doc. 2022-07756) (2022).advance our understanding of the health and socioeconomic burdens on individuals affected by long COVID
   • Source 2. HHS, Invisible Illness: Long COVID (2026).Long COVID contributes to reduced workforce participation, disability, and significant economic burden, with national costs estimated in the hundreds of billions of dollars annually.

5. The total cost of a search for a diagnosis, the kind of study HHS’s own working group asked for

   Today: 72 conditions are in section 1, ME/CFS and long COVID among them, and each visit or test a person types for any of them is priced from its federal file and row, or marked unpriced. With more answers: With diagnostic searches itemized line by line and enough of them, for any condition, tick-borne illness among them, HHS could set the cost of a search, as people lived it, beside the published per-case estimates.

   This tool itemizes the search for a diagnosis of an invisible illness (ME/CFS, long COVID and the other conditions in section 1), visit by visit and test by test. HHS’s Tick-Borne Disease Working Group asked for studies of the total cost of illness of tick-borne diseases, beginning with Lyme, and the Lyme human-centered design report made for the HHS LymeX effort recommends a cost-of-care resource.

   Today: 72 conditions are in section 1, ME/CFS and long COVID among them, and each visit or test a person types for any of them is priced from its federal file and row, or marked unpriced. The asks cited below name Lyme, and its two blood tests are priced from the CMS Clinical Laboratory Fee Schedule: CPT 86618 at $17.03 and CPT 86617 at $15.49, each with its file and row. Lyme is one of the conditions in section 1.

   With a larger N: With diagnostic searches itemized line by line and enough of them, for any condition, tick-borne illness among them, HHS could set the cost of a search, as people lived it, beside the published per-case estimates.

   • Source 1. Tick-Borne Disease Working Group, 2018 Report to Congress, Recommendation 3.3 (2018).Support economic studies and activities to estimate the total cost of illness associated with tick-borne diseases in the United States, beginning first with Lyme disease and including both financial and societal impacts.
   • Source 2. Lyme Disease Human-Centered Design Report, Coforma for the HHS LymeX effort (2021).Develop and maintain a cost-of-care resource that estimates the total cost of types of Lyme care

6. NIH’s policy on sex as a biological variable

   Today: Every burden ranking on the register is also read by sex, by the same function as the total, and a sex group holding fewer than 11 answers is withheld rather than shown. With more answers: With enough answers for one condition, a research team could see whether women and men with that condition rank its burdens differently, and build sex into a cost-of-illness study from the start.

   NIH expects sex to be factored into the design, analysis and reporting of the vertebrate animal and human studies it funds; the policy took effect in January 2016.

   Today: Every burden ranking on the register is also read by sex, by the same function as the total, and a sex group holding fewer than 11 answers is withheld rather than shown.

   With a larger N: With enough answers for one condition, a research team could see whether women and men with that condition rank its burdens differently, and build sex into a cost-of-illness study from the start.

   • Source 1. NIH Guide notice NOT-OD-15-102, Consideration of Sex as a Biological Variable in NIH-funded Research (2015).NIH expects that sex as a biological variable will be factored into research designs, analyses, and reporting in vertebrate animal and human studies.
   • Source 2. NIH Office of Research on Women’s Health, Sex as a Biological Variable (2026).the development and implementation of NIH’s SABV policy, which went into effect in January 2016