Massachusetts Lyme Reporting

post by jefftk (jkaufman) · 2021-05-10T22:40:05.857Z · LW · GW · 12 comments

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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comment by RamblinDash · 2021-05-11T16:43:56.121Z · LW(p) · GW(p)

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.

Replies from: gabriel-holmes
comment by tkpwaeub (gabriel-holmes) · 2021-05-12T11:27:49.562Z · LW(p) · GW(p)

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.

Replies from: ChristianKl
comment by ChristianKl · 2021-05-12T12:47:43.135Z · LW(p) · GW(p)

Did you take antibiotics afterwards/did your doctor recommend them to you?

comment by ChristianKl · 2021-05-11T16:57:59.241Z · LW(p) · GW(p)

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?

Replies from: jkaufman, RamblinDash
comment by jefftk (jkaufman) · 2021-05-11T18:34:50.092Z · LW(p) · GW(p)

Yes, this should be possible, and MA does it internally:

Tick-borne Disease Visit: International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10) query of the first three diagnostic codes assigned to the ED visit for: Lyme disease (A69.2), babesiosis (B60.0), anaplasmosis (A77.49), and other tick-borne diseases (A68.1, A68.9, A77.40, and A93.8).

See reports at

comment by RamblinDash · 2021-05-11T17:00:56.789Z · LW(p) · GW(p)

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.

comment by ChristianKl · 2021-05-11T21:01:17.917Z · LW(p) · GW(p)

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.

comment by ChristianKl · 2021-05-11T18:53:34.225Z · LW(p) · GW(p)

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

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:

Replies from: jkaufman
comment by jefftk (jkaufman) · 2021-05-11T18:59:58.320Z · LW(p) · GW(p)

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.

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.

Replies from: ChristianKl
comment by ChristianKl · 2021-05-11T19:41:35.045Z · LW(p) · GW(p)

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:

And you know, this authority to collect data carries with it a really great responsibility to each individual patient. So, public health practitioners are required by law to collect only those data which are necessary for the public health function, and also not to release information that resultsin the identification of an affected individual. 


So, we need better diagnostics, especially for diseases like Lyme disease, where diagnosis is based on antibody detection, rather than pathogen detection. We need improved access to laboratory testing for emerging diseasessuch as Powassan, rather than trying to rely on just a few centralized laboratories. 

We need continued support for development of public health infrastructure with less focus on disease specific resources, and more broad-basedsupport, so that individual jurisdictions can direct resources at the places where --that they identify they have the biggest gaps.The use of electronic health records and real-timedisease reporting processes through electronic health record data is critical to the sustainability of surveillance, and needs to be prioritized for development.

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:

 Hi, my name is Jenna Luche Thayer. And I have worked globally for 32 years on the rights of the marginalized, and held senior advisory positions for the U.S. Government in the United Nations, and I'm the founder and director of the Ad-Hoc Committee for the Health Equity in the ICD-11 Borreliosis codes, and the global network on Institutional Discrimination. And my expertise includes human rights and transparency and accountability of governance

So, according to one of many odd articles that hasbeen sponsored by 32 million dollars in NIH grants, translational research grants, I'm also "nefarious,"and "dangerous,"and I'm being sponsored by unknown and powerful sources. So, I just want you to know that my husband has invited everyone to our house for a barbecue, so you can know who he is. Anyway, to day, I'd like to talk about some observations and solutions to enhance representation, transparency and accountability in the process that we're undergoing, and I'm using my expert hat on this. I have personally participated in numerous federal advisory boards, and I know that federal law recognizes two valid and distinct options for public members who are participating. One can be either a representative, or a special government employee. 

A representative provides the points of view of non-governmental entities and/or a recognized group such as Lyme patients, people who treat Lyme, et cetera; doctors who especially treat those who persist in complicated forms of the disease, advocates who are perhaps promoting valid diagnostic tests such as the nested PCR/DNA sequencing technologies that uses direct detection and is currently available, and can actually identify the illness before it disseminates.In contrast, a special government employee, which is what the current public members have been asked to do, promote government interests first, and are under the supervisionalandoperational control of the agency, in this case HHS, even on the days when they are not serving on the working group.

And as employees,their wide ranging restrictions include legal, financial, representational, and research limits. For example, they are not allowed, according to the law, as an SGE, to testify against Department of Health Officers, or government line policy, or on behalf of the human rights defenders of this group. And when I talk about that human rights defenders I talk about the researchers, the scientists, and the practitioners of health, who are getting much needed care to this patient group. 

They are not allowed to generate earnings from research presentations, publications, and media events that counter the Lyme --the CDC's Lyme propaganda. They are not allowed to state that the CDC Lyme policy doesnot support human rights violations, or ignores the many potentially fatal medical conditions caused by Lyme. And I want you to know that these are all on record since June 2017. They were accepted by Dr. Danis Pures [phonetic sp], who is a special [unintelligible] for health and human rights. So, given these considerations and options, I recommend that all members be converted to representative status.

Video of her talk:

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. 

comment by tkpwaeub (gabriel-holmes) · 2021-05-12T11:18:42.011Z · LW(p) · GW(p)

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?

Replies from: ChristianKl
comment by ChristianKl · 2021-05-12T14:36:56.317Z · LW(p) · GW(p)

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.