Each phrase is a step a source documents, cited beside it. Prices come from running the sentence through the reader, at national Medicare allowed amounts: what Medicare and the patient pay together. Counts stay at one unless a source gives the number.
What the sources report: 35 weeks to 3 years, how long the illness had lasted: more than 35 weeks for over 91% of one survey, almost three years in one Senate testimony. [10][34]
- saw my regular doctor [1]CPT 99213 · CMS 2026$95.19
- went to urgent care [1]CPT 99203 · CMS 2026$117.57
- a chest X-ray [1]CPT 71046 · CMS 2026$33.07
- an EKG [1]CPT 93000 · CMS 2026$15.36
- saw a pulmonologist [1]CPT 99204 · CMS 2026$177.36
- saw a cardiologist [1]CPT 99204 · CMS 2026$177.36
- blood work [32]CPT 85025 · CMS 2026$7.77
- was told it was anxiety [1][33]being told it was nothing is a real event with no billing code: counted, never priced
- waited a year [1]a length of time, not a unit of care. Tell us the visits and tests inside it
- a first visit at the long COVID clinic [1]CPT 99205 · CMS 2026$236.81
- lost my job [34][10]Days of work you missed: a real cost kept on the ledger by name, never priced here
8 priced lines, 3 kept by name and unpriced$860.49
What the research says
People with long COVID describe a loop of specialist visits; tests often come back normal and lead to yet another referral. [1]
“Normal results often lead to recommendations to see other specialists”
A participant paid about $19,000 out of pocket in one year, mostly for a clinic insurance did not cover. [1]
“I paid about $19,000 out of pocket for medical bills the entire year.”
Long COVID is diagnosed on clinical grounds; no available biomarker proves it. [6]
“No biomarker currently available demonstrates conclusively the presence of LC.”
45.2 percent needed a reduced work schedule and 22.3 percent were not working because of their health. [10]
“45.2% (42.9% to 47.2%) of respondents reported requiring a reduced work schedule compared to pre-illness.”
Loss of income and changes in insurance were compounded by high health care costs. [25]
“loss of income and changes in insurance, which were compounded by high healthcare costs.”
Her disability insurance application was denied twice. [34]
“I have been denied twice.”
What Waypoint does
- Every visit and test becomes its own line, priced at one published CMS figure that carries its code and year. Price my journey
- Being told it was anxiety, stress or nothing stays on the ledger in your words: a real event with no billing code, counted and never priced. Price my journey
- The care you waited for, were refused or went without is counted on its own, because no federal file records it. What the data never recorded
- Work you lost goes on the workdays card, priced only from your own pay or a published weekly wage, never added to the medical total. My ledger
What the sources report: 2 to 7.7 years, time to diagnosis: a median of 24 months in a survey of 4,835 people with POTS, an average of 7.7 years across dysautonomia. [11][31]
- searched for two years [11]a length of time, not a unit of care. Tell us the visits and tests inside it
- saw my regular doctor [31]CPT 99213 · CMS 2026$95.19
- went to the ER when my heart was racing [11]CPT 99284 (APC 5024) · CMS 2026$544.54
- was told it was anxiety [11]being told it was nothing is a real event with no billing code: counted, never priced
- saw a neurologist [31]CPT 99204 · CMS 2026$177.36
- saw a cardiologist [31]CPT 99204 · CMS 2026$177.36
- blood tests [30]CPT 85025 · CMS 2026$7.77
- a tilt-table test [30][29]CPT 93660 · CMS 2026$168.34
6 priced lines, 2 kept by name and unpriced$1,170.56
What the research says
People with POTS saw a median of five physicians before diagnosis; 21 percent saw more than ten. [11]
“On average, patients saw 7 ± 11 [median 5 (IQR 3–8)] physicians prior to a diagnosis of POTS.”
77 percent were told by a physician their symptoms were psychiatric or psychological. [11]
“There were 3471 (77%) respondents who encountered a physician who suggested their symptoms were due to a psychiatric or psychological problem”
Respondents averaged nine emergency department visits before diagnosis. [11]
“Number of ED visits prior to diagnosis 9 (16)”
One participant avoided a tilt-table test for fear a negative result would mean being told nothing was wrong. [29]
“I was worried that if it wasn’t then I would be treated like, ‘Oh, there is nothing.’”
People with long COVID who developed POTS reported more financial difficulty and isolation. [28]
“Participants with self-reported POTS were younger, had more financial difficulties, more social isolation”
What Waypoint does
- Every visit and test becomes its own line, priced at one published CMS figure that carries its code and year. Price my journey
- Being told it was anxiety, stress or nothing stays on the ledger in your words: a real event with no billing code, counted and never priced. Price my journey
- Say how long the search took and the ledger shows the years searching and the clinicians named beside the total. My ledger
- One printed page to hand the next clinician: what happened, what each line costs and where each figure comes from. Appointment sheet
Lyme disease with lasting symptoms
Every test came back negative
Composite journey, built from published patient research
What the sources report: 2 to 7.5 years, time to diagnosis: at least two years for 61.7% of one patient survey, seven and a half years for one patient in the HHS report. [12][2]
- searched for two years [12]a length of time, not a unit of care. Tell us the visits and tests inside it
- went to the ER [13][13]CPT 99284 (APC 5024) · CMS 2026$544.54
- was told it was bursitis [13][13]the name of a condition, not a unit of care. The visits and tests that found it are what carry a published figure
- saw my regular doctor [13]CPT 99213 · CMS 2026$95.19
- blood work [2]CPT 85025 · CMS 2026$7.77
- a Lyme test [14]CPT 86618 · CMS 2026$17.03
- saw a neurologist [2]CPT 99204 · CMS 2026$177.36
- was sent to a psychiatrist [2]CPT 90791 · CMS 2026$173.35
- saw an infectious disease doctor [14]CPT 99204 · CMS 2026$177.36
- saw a Lyme specialist [2][8]CPT 99204 · CMS 2026$177.36
- the tests came back negative [2]read with the line before it, not a separate unit of care
8 priced lines, 2 kept by name and unpriced$1,369.96
What the research says
Symptoms were attributed to depression, anxiety or stress before Lyme was found. [2]
“a lot of my symptoms were pawned off to depression or anxiety or stress.”
The report’s journey maps mark the point where insurance stops paying and costs build up. [2]
“Insurance usually drops off at this point, and medical costs start to build up”
Up to half of the illness costs of persistent Lyme symptoms are paid out of pocket, often for therapies insurance does not cover. [8]
“Up to half of the illness-related costs are borne out-of-pocket”
Without a diagnostic test, people with persistent Lyme symptoms are stigmatized and dismissed. [8]
“have often led to stigmatization and dismissal of people living with Lyme IACI by the health care system”
They reported more health care use and greater out-of-pocket medical costs than people with other chronic diseases. [12]
“increased utilization of healthcare services, and greater out of pocket medical costs.”
What Waypoint does
- Every visit and test becomes its own line, priced at one published CMS figure that carries its code and year. Price my journey
- Being told it was anxiety, stress or nothing stays on the ledger in your words: a real event with no billing code, counted and never priced. Price my journey
- Care insurance did not cover is still priced at the published Medicare reference for that visit, labelled as a reference, never as what you paid. How every figure is made
- Every line carries a thumb: where the federal figure does not describe you, that lands as a counted correction on its row, published on the register. The register
Hypermobile Ehlers-Danlos syndrome
Fifteen clinicians before a name
Composite journey, built from published patient research
What the sources report: 10.4 to 22.1 years, time to diagnosis: 10.39 years on average in the Ehlers-Danlos Society registry survey, 22.1 years in a global survey of 3,360 people with hEDS. [15][16]
- searched for ten years [15]a length of time, not a unit of care. Tell us the visits and tests inside it
- saw my regular doctor [16]CPT 99213 · CMS 2026$95.19
- went to the ER [16]CPT 99284 (APC 5024) · CMS 2026$544.54
- saw a GI specialist [16]CPT 99204 · CMS 2026$177.36
- saw a cardiologist [16]CPT 99204 · CMS 2026$177.36
- saw a neurologist [16]CPT 99204 · CMS 2026$177.36
- was told it was anxiety [15]being told it was nothing is a real event with no billing code: counted, never priced
- saw a rheumatologist [15]CPT 99204 · CMS 2026$177.36
- traveled 300 miles [16]a trip to care, not a unit of care. Counted, never priced. The miles belong on the Trips card.
- saw a genetics specialist [15]CPT 99204 · CMS 2026$177.36
7 priced lines, 3 kept by name and unpriced$1,526.53
What the research says
People with hypermobile EDS saw an average of 15.6 clinicians and waited 10.39 years for the diagnosis. [15]
“respondents saw an average of 15.6 clinicians (24% reported that they saw 20 or more), and the average time to diagnosis was 10.39 years”
Many paid out of pocket for a specialist not covered by insurance. [16]
“many participants report paying out-of-pocket for medical care from a specialist not covered by insurance.”
Repeated dismissal in health care, especially in childhood, left people with EDS doubting their own pain. [17]
“Participants attributed much of their self-doubt to repeated dismissal and minimisation of their symptoms in healthcare settings, especially during childhood.”
Some withdrew from conventional medicine altogether. [17]
“others withdrew from the conventional medical system altogether.”
Few relied on the health care system; most built their own strategies, including complementary care. [18]
“Very few relied on a “system” of health care and instead developed their own strategies”
What Waypoint does
- Every visit and test becomes its own line, priced at one published CMS figure that carries its code and year. Price my journey
- Say how long the search took and the ledger shows the years searching and the clinicians named beside the total. My ledger
- A trip to care is counted on the Trips card and never priced as care. My ledger
- Being told it was anxiety, stress or nothing stays on the ledger in your words: a real event with no billing code, counted and never priced. Price my journey
What the sources report: 6.9 to 13 years, time to diagnosis: 6 years 11 months on average in a LUPUS UK survey, 13 years when the ANA test stayed negative. [19][19]
- searched for almost seven years [19]a length of time, not a unit of care. Tell us the visits and tests inside it
- saw my regular doctor about the fatigue [19]CPT 99213 · CMS 2026$95.19
- blood work [19]CPT 85025 · CMS 2026$7.77
- an ANA test [19]CPT 86038 · CMS 2026$12.09
- was told it was anxiety [20]being told it was nothing is a real event with no billing code: counted, never priced
- saw a rheumatologist [19]CPT 99204 · CMS 2026$177.36
- was sent to a psychiatrist [19]CPT 90791 · CMS 2026$173.35
- saw a neurologist [19]CPT 99204 · CMS 2026$177.36
- went to the ER [19]CPT 99284 (APC 5024) · CMS 2026$544.54
- saw a second rheumatologist [19]CPT 99204 · CMS 2026$177.36
8 priced lines, 2 kept by name and unpriced$1,365.02
What the research says
76 percent had at least one misdiagnosis; mental health misdiagnoses were 47 percent of them. [19]
“Seventy-six per cent reported at least one misdiagnosis”
One respondent was sent to a psychiatrist because blood results were normal; the psychiatrist sent her back to a new rheumatologist. [19]
“The rheumatologist sent me to see a psychiatrist because I complained that I felt ill even though the blood results were OK.”
GPs put symptoms down to anxiety, stress or "nothing wrong" for years. [20]
“GP said: ‘Maybe there’s an element of anxiety there’.”
Some clinicians stopped investigating because it was too expensive to continue. [20]
“particularly when the clinician indicated that it was too expensive to keep investigating.”
What Waypoint does
- Every visit and test becomes its own line, priced at one published CMS figure that carries its code and year. Price my journey
- Being told it was anxiety, stress or nothing stays on the ledger in your words: a real event with no billing code, counted and never priced. Price my journey
- Say how long the search took and the ledger shows the years searching and the clinicians named beside the total. My ledger
- One printed page to hand the next clinician: what happened, what each line costs and where each figure comes from. Appointment sheet
One year of care, at the one to two crises a year an adult with sickle cell disease described to the National Academies. [9]
- went to the ER twice for a pain crisis ×2 [9][7]CPT 99284 (APC 5024) · CMS 2026$1,089.08
- stayed in the hospital for five days [9]a hospital stay. Medicare pays a stay as one amount per stay, from a file this table does not hold, so it stays unpriced here
- saw my hematologist [3]CPT 99204 · CMS 2026$177.36
- blood work [3]CPT 85025 · CMS 2026$7.77
3 priced lines, 1 kept by name and unpriced$1,274.21
What the research says
People with sickle cell disease describe the ER as a last resort, with long waits and accusations of drug seeking. [3]
“accusations of “drug seeking”, extended emergency department wait times, and difficulty filling prescriptions.”
Guidelines say pain medicine within 30 minutes of triage, but timely re-dosing is rare in most EDs. [7]
“it is rare in most EDs, for variety of reasons.”
Pain medicine came in 62 minutes at an infusion center against 132 minutes in the emergency department. [9]
“time to administer pain medication at an infusion center was 62 minutes compared to 132 minutes in the emergency department”
Adults with sickle cell disease describe being treated as drug-seeking when they ask for pain relief. [24]
“they’re looking at you like you’re, you’re a drug addict trying to, and you’re just in pain”
Gaps in primary care push people toward the ER and hospital, which is costly and traumatic. [3]
“The disconnect of primary care can result in increased ER visits and hospitalizations”
What Waypoint does
- Every visit and test becomes its own line, priced at one published CMS figure that carries its code and year. Price my journey
- A hospital stay stays on the ledger by name, unpriced, and nothing is guessed. How every figure is made
- Every line carries a thumb: where the federal figure does not describe you, that lands as a counted correction on its row, published on the register. The register
- The care you waited for, were refused or went without is counted on its own, because no federal file records it. What the data never recorded