In putting together yesterday’s post on Lyme disease prevalence I noticed something very strange with Massachusetts:
It’s even more striking if you look at a map (2018):
There’s no way Lyme follows state borders like this; it has to be some sort of data issue.
Looking over several years of CDC maps, the year that Massachusetts starts looking different matches up with the huge drop in the chart above. Compare 2015:
To 2016:
The only public explanation there seems to be is this short news article. In 2016 the MA Department of Public Health “stopped spending time and resources trying to track down the clinical information, instead relying solely on positive lab results to give a more accurate estimate of Lyme disease case numbers.”
The CDC gets their information from the states, and in this case requires both a clinical diagnosis and a positive test. MA, apparently uniquely among the states, has decided that when compiling statistics confirming a clinical diagnosis is extra work that doesn’t improve accuracy. So MA doesn’t generally have the stats it would need to file with the CDC, and instead of marking MA as “no data”, the CDC publishes the trickle of reports that it does get from MA.
I don’t know whether the CDC or MA is being more unreasonable here, but the effect is pretty bad: user-facing websites like TickCheck show MA as now having low Lyme levels. The CDC does not even include a note in their FAQ to say MA data shouldn’t be trusted.
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As someone who both lives in Massachusetts and has had Lyme, I can provide some context. When I had the classic bullseye rash pattern associated with Lyme, I called my doctor and asked about treatment. The doctor raised the possibility of getting a Lyme test, but told me that the Lyme test had a high enough false negative rate that even if I tested negative, she would still recommend I be treated for Lyme, and said that on that basis I didn’t really need to do the test. I have not independently researched the accuracy of the Lyme test, but here’s my understanding of the considerations based on what she said:
-The cost, both monetary and otherwise, of being treated for suspected Lyme is low
-The likelihood of a false negative is relatively high
-Untreated Lyme can be quite serious and can cause permanent damage if not treated promptly
-The test also takes time and hassle to obtain
Given these considerations, I (quite sensibly IMO) decided not to take the test.
Interestingly my doctor once recommended against getting tested for Lyme for the opposite reason—false positives. He said he felt a false positive often did enough harm that it wasn’t worth the risk. I told him I respected his Hippocratic oath on these matters, and he seemed appreciative.
Did you take antibiotics afterwards/did your doctor recommend them to you?
I might a naive German, but if people actually get treated for Lyme disease without a test, shouldn’t the doctor bill the treatment through some ICD code to healthcare insurance? In that case the insurance companies should have the good data of how many people get treated for lyme disease.
Is this something about the US healthcare system that makes this hard?
Yes, this should be possible, and MA does it internally:
See reports at https://www.mass.gov/lists/monthly-tickborne-disease-reports
Not sure—treatment for Lyme (if caught early) is just antibiotics, and there might not be a Lyme-specific office visit code. So it might just show up in billing records as:
1 Office Visit (these are coded with levels of complexity but not with specific patient complaints/diagnoses IIRC).
0-2 days later, 1 prescription fill for a standard course of some generic antibiotic.
It seems like there’s a deep rabbit hole here of fights over illness definition. Jenna Luche Thayer fought a battle for changing how lime disease is diagnosed and wrote $Lyme: How Medical Codes Mortally Wound Corruption and Scientific Fraud about her fight. While that title does sound like she’s a conspiracy nut, she was good enough at fighting her battle to get the UN to add new ICD codes by leveraging the UN rapporteur for human rights which choses that she understands the system well enough to effectively move in it.
This makes it sound like TickCheck is a neutral party here. TickCheck doesn’t make money by providing the data to users but makes money by selling tests. It would be easy for them to give their visitors better data but reporting the data like this is a way to put pressure on MA to buy more tests.
The CDC seems to use a definition from the Council of State and Territorial Epidemiologists from 2017. If anyone wants to do more reading about how the current definition came out they published the meeting notes of the working group: https://www.hhs.gov/sites/default/files/HHS%20-%20Transcripts%20-%20Part%205.pdf
Saying “there’s not much Lyme in MA” doesn’t help TickCheck, though?
Additionally, MA is still doing lots of testing. It is the statistics on clinical diagnoses they’re not doing.
It seems that the tests are worthless for patients and potentially a net harm given the amount of false negatives they produce.
If you are a company it’s hard to control what 50 different states are doing. It’s easier to lobby for a centralized definition of lyme disease cases that includes lab tests. Then your PR department that controls a website like TickCheck rules that the state that opts out of the centralized definition and starts a more independent health policy should face negative consequences for doing so. Then your lobbyists can go to the law-makers there and say: “Look because your burocrats don’t report proper numbers, your citizens get bad data when they go to TickCheck, can you please put a bit of pressure on your burocrats? In a completely unrelated matter, how is your fundraising for your next race going?”
The meeting notes are interesting.
They first start with a stakeholder perspective by Dr. Catherine M. Brown is the Deputy State Epidemiologist and State Public Health Veterinarian for the Massachusetts Department of Public Health.
She argues among others:
After she speaks the second stakeholder perspective is by Dr. Sarah Vetter a lobbyst from the Association of Public Health Laboratories.
A bit later it gets more spicy:
I don’t want to spoil the rest but it’s a much more interesting read then I would have expected given it being a committee meeting.
I read a fascinating paper a while back about estimating the true prevalence of Covid-19 using positivity rate and case rate. The suggestion is to use the geometric mean, since the two numbers often move in different directions. I wonder if it could be applicable to Lyme disease as well?
https://www.medrxiv.org/content/10.1101/2020.10.07.20208504v1.full
There’s an issue of what we care to measure. The number of people who go to the doctor with a rash due to Borrelia bacteria and then take antibiotics and everything is fine might be able to be estimated that way.
On the other hand that’s not really what we care about. We care about not getting long-term problems.
In a similar fashion, if you don’t get Lyme disease but another nasty tickborne disease that can be treated with antibiotics we don’t care that much about the difference to Lyme disease.