LymeHQ · Funding

Who pays, and what that buys them

A patient platform funded by anyone other than patients has to say who, and be specific about what that money is for. This page does that, including the part that is uncomfortable to write down.

Where this stands today

LymeHQ has taken no payments and holds no revenue. There is no live checkout, no signed licensing agreement, and the fund that this page describes is not open for applications. What follows is how the business is structured and what has been committed to — not a description of money currently moving.

01 · The uncomfortable part, first

Your record is never sold. Aggregates can be licensed.

Those are different sentences and the difference is the whole product.

It would be easy to write “we don’t sell your data” here, and it would be doing work the reader cannot see — two of the four revenue streams below are research and industry access to data. So here is the whole answer instead: what is sold, to whom, through what gate, and what is never sold at all. It is a longer sentence than the slogan and it has the advantage of surviving being checked.

What is sold
Access to a pre-computed table of aggregates: how many people match a combination of characteristics, and the average symptom scores for that group. Built only from people who switched research sharing on. Location is cut to the first three digits of a postal code before it is stored at all, seventeen sparsely-populated ones collapse further at the de-identification boundary, and ages of ninety and over are grouped.
To whom
Accounts holding a research role — academic researchers, and industry. Industry is its own role in the database rather than a label on an account: it is evaluated separately in every access decision and in both of the functions that reach the aggregates. Academic and commercial access are structurally distinguishable, not administratively distinguished.
Through what gate
Two of them, and they are different. Counts are open to any research account. That is deliberate: requiring an application before someone can learn whether a cohort exists produces applications written on guesses. Figures require an approved, unexpired institutional review board request naming the specific dataset — what the database enforces is that the approval exists, has not expired, and names that dataset.
Under both gates, nothing describing fewer than five people is released. Groups below five are never written into the table in the first place, the release function re-applies the same floor rather than trusting the table, and it raises the floor if a dataset asks for more but will not go below five. There is no setting that turns it off.
What is never sold
An individual record. Not sold, not licensed, not transferred, not shared with an advertiser, and not made available to a researcher at any price or under any approval. There is no permission anywhere in the database that would give a research account a row of anyone’s health data — so the answer to that request is nothing, rather than a filtered something. Also never sold: your journal, your Beacon conversations, your email address, or the fact that you have an account here.

And the tense, said plainly

Nobody has paid for any of this. There is no live checkout and no signed licensing agreement. The data mechanism above is enforced and tested; the commerce around it has not started.

Contributing is a gift and never a requirement. Nothing on LymeHQ — not the tracker, not the library, not help with a bill — is conditional on sharing anything, and that is a rule the code enforces rather than a paragraph in a policy.

02 · The rates

The more extractive the source, the more goes back

Four streams, four contribution rates, written into the structure rather than into a values page.

5%Provider subscriptionsA clinician paying for tools takes nothing from a patient.
15%Affiliate commissionsSomeone buying a tick remover they were going to buy anyway.
20%Research licensingAccess to aggregates that patients chose to contribute.
25%Pharma dataset accessThe most extractive use, so the highest contribution back.

Percentages of net revenue on each stream, committed as a contractual obligation in the agreements that govern them rather than as a pledge. The ordering is the argument: the revenue that takes the most from patients contributes the most back to them.

Most of what this costs is not treatment

Two kinds of cost, and the larger one never reaches an invoice.

The bigger share of what a Lyme illness costs is not care at all. It is income, hours and careers.

A cost that never reaches an invoice is the one least likely to be counted — by a clinician, an insurer, or a study. If you are keeping track of what this is costing you, the work you could not do belongs in the total.

MyLymeData is a patient-reported registry. These shares describe what its participants reported about their own illness — not a population average, and not a prediction of what any one person will pay.

Source: MyLymeData, LymeDisease.org — the largest cost never appears on a bill.

03 · Where it goes

Directly to the lab, the pharmacy or the clinician

Never as cash to a patient.

The commitment is narrow and it is the reason the rest of this exists: nobody should go untested because they cannot afford it. Contributions fund care that insurance has refused, in these categories:

Specialty laboratory testing that insurance has refused
Prescription medications a plan will not cover
Visits to a clinician experienced in tick-borne illness
Supplement protocols recommended by a treating clinician

Two rules about how it pays

Payment goes to the lab, the pharmacy or the clinician — never as cash to a patient. That keeps it a payment for care rather than an income, which matters for both fraud and tax, and it means a grant cannot quietly become something else.

Access is never conditional on sharing data. Contributing to research is not a condition of receiving a grant. Priority in a queue is a legitimate thank-you; refusing someone because they declined is not, and that line is drawn deliberately.

What is not built

The grant application, the review, the disbursement and the public balance are all designed and none of them is open. No amounts are published here for the same reason: with no disbursement running and no agreements signed, a figure would be a promise made to someone counting money they do not have.

04 · Commerce

When we recommend something, you can see why

A shop inside a health platform is a conflict of interest unless it declares itself.

Patients buy tick removers, permethrin, protective clothing and supplements anyway. Buying them through a link here routes a commission into the fund. That is a real interest and it is declared wherever a link appears: outbound product links are marked as sponsored in the markup, and the disclosure sits beside the links rather than in a footer.

No prices are real yet and nothing is buyable. What exists is an honest guide to what people use, with the evidence stated in tiers and no efficacy claimed where none exists.
No product carries a dose. A dose on a product card is a dosing recommendation with a price tag on it.
Beacon never recommends a purchase, and the shop never appears inside a clinical flow — no product beside a symptom entry, a lab result or a conversation. A product suggestion next to a symptom entry is a price on care.
Organisations, labs and products are described, never ranked. What something is and what it does; the reader decides.

LymeHQ is a for-profit company with the contribution built into its structure rather than a non-profit — a contractual obligation in a licensing agreement is more durable than a promise on a values page, and it survives a change of ownership. What that means for your data is on your data, your rules.