NMS does not list consumers as their customers, and none of their customers make medical decisions based on their lab work.

NMS claims CLIA certification. This is the older law where labs self-certify compliance. Congress left CLIA in place alongside FDA IVD regulations to protect small pharmacists, but obviously Quest Diagnostics and LabCorp run fleets through that loophole, and most labwork is CLIA-certified, not FDA-approved.

Paying to test for highly-prevalent, possibly-toxic, pervasively-feared, under-studied chemicals is an ideal recipe for fleecing people with no real benefit.

Perhaps worse, if people get burned because it is corrupt, it puts people off trusting good providers. This is not just "Hey I made an app/web-site to track your period! How cool is that?" Some chemicals may be toxic, but so is fear.

So yes, it's super important to enable people to concretely understand their risks, protect themselves, and advocate for health policies. All the more reason to do it right.

So I hope you know what you're doing. Somehow the website needs to convey the organization behind it, and why that organization can be trusted to do this right, and not to mislead people.

This is highly misleading. CLIA and the associated federal regulations are the standard to which diagnostic clinical laboratories are held, not an "older" or "loophole" regulation. All laboratories in the US that provide patient results for clinical use are regulated by CLIA. There are FDA-approved test systems and "Lab-developed tests" (LDTs) that are BOTH subject to CLIA obligations, which are unbelievably complex (and in my opinion are a source of regulatory capture in laboratory medicine, but that's not directly relevant). Most high complexity lab tests are LDTs.

FDA-approved tests go through a formal FDA process such that the performing lab only has to "verify" the performance characteristics prior to patient testing. An LDT requires a much more stringent lab-level validation plan prior to patient testing. Both requiring strict ongoing quality control and quality assurance. And while the validation plan for an LDT can be self-designed, there are still strict requirements for what it most contain.

Compliance is NOT "self-certified," instead there are routine, extremely intensive compliance inspections (scheduled and unscheduled), either by a regional CLIA office, or by an organization accredited by CMS to provide such verification of compliance (such as CAP or COLA). These are not cursory inspections but a deep dive into all lab operations and personnel, equipment, maintenance and quality records, and other documentation.

I'm not a huge fan of Quest or Labcorp's presence in the field, and I don't know the specifics of NMS and this PFAS testing (CLIA compliance isn't required for research or non-clinical). If NMS has CLIA certification and they state the methodology and limitations of their LDT it's generally perfectly valid to provide the test, and the burden is generally on the downstream physician or provider to ensure the results are properly interpreted and applied.

Direct to consumer lab testing is offered in ~47 states in the country. It has been available for years with thousands of tests available. To date, there has been no apocalypse from empowering consumers to know about their own personal health.

NMS is one of the preeminent toxicology labs in the country. This test is Liquid chromatography–mass spectrometry which is known, quantifiable, extremely accurate and repeatable test methodology.

National Academies of Science, Engineering and Medicine explicitly references this lab in their report. Further, they go on to elucidate the risks and benefits of offering PFAS testing to people.

"Harms of PFAS testing include fear induced by blood draw, a small risk of injury or infection at the draw site, difficulties in interpreting results, and psychological stress that may occur when people who are tested learn that they or their family members have high levels of PFAS exposure. On the other hand, biomonitoring for PFAS blood levels may also alleviate fears associated with not knowing one’s PFAS levels. Another potential benefit is increasing awareness of exposure so that exposures can be reduced. If sources of exposure are identified, actions taken to reduce these exposures, such as using a water filter, may also benefit family members in addition to the person who was tested. Community-level benefits may be associated with PFAS testing as well, such as empowering communities to respond to contamination and providing a baseline with which to evaluate the impact of community-level interventions to reduce exposure. Additionally, biomonitoring for PFAS in the context of epidemiologic studies could provide more information about PFAS-associated health effects."

Also a couple of quotes from the same paper.

"Kristen Mello of Westfield Residents Advocating for Themselves (WRAFT) said to the committee:

You don’t have a problem getting an insurance assessor when your car is hit, you don’t have a problem getting an insurance assessor when you have a tornado, but this slow motion unfolding environmental and public health disaster … is intentionally keeping the information from us so that we cannot take action.

Furthermore, Emily Donovan of Clean Cape Fear, said:

Sadly it feels like guinea pigs are treated better, because at least their exposures are thoroughly studied for the betterment of humanity.

And Cathy Wusterbarth of Need Our Water said:

We’ve tested the fish; we’ve tested the deer; we’ve tested the groundwater, the waterways, and the foam. When are we going to test the people?… The only risk [of testing] is to the polluters who do not want us to link them to our exposure."

Make what you will.

Source: https://www.ncbi.nlm.nih.gov/books/NBK584705/

Consumers should always be allowed to do their own research.

So instead, the question is, if I pay $400 what meaning/value am I getting from this. And what can I get above and beyond the given 98% certainty I have that I've already ingested one of these chemicals?

I think it's right there in the post itself. If you have certain occupations, live in certain zip codes, or have medical problems, a test like this can prove invaluable.

If you're just curious, your mileage may very.

I do push back on the idea that not knowing is somehow better. Or people cannot handle learning new information about themselves. It's an old idea from medicine I hope we can move past as it just entrenches the power dynamic between caregivers and patients.

Invaluable, as in, worthless?

Invaluable for what? What are you going to do if you test positive?

If your level is significantly elevated (>20 ng/mL), you can audit your environment by testing your tap water and installing a reverse osmosis whole house filter (expensive). If your level is low, you don't need to do any of this. By eliminating point source exposure, your PFAS levels would naturally decline in time.

Lastly, I bring up therapeutic phlebotomy as interesting emerging research because it points in a concrete direction to something that is very actionable (pending more study).

Edit: grammer

Emerging research is not something actually concretely actionable for most people. Worse, because most people are "arm-chair experts" without clear guidance, your average person is more likely to harm themselves with doing their own research into things like this than otherwise.

For the additional thing about "reverse osmosis whole house filter" most people likely can't do afford to do this. Even if they can, there would need to be much better guidance here to have any certainty that someone wasn't selling you snake oil. The only things I can find on these systems in searches is that the companies that sell them recommend them, and won't even say they can filter out PFAs on their own, that's a major red flag to me that this is poorly regulated and likely dangerously marketed for things they can't do anything about.

A thought experiment, if I offer you two glasses of water, and tell you one has PFAs and the other doesn't how could you actually test that assumption? How could you have certainty in that test? I'm not saying it can't be done, but knowing what companies you can trust in a brand new space is not something obvious, and especially in a low-regulation space can be a major opportunity for companies to use meaningless words to try and convince you they're doing more than they are.

I had an insect exterminator come to my door and tell me the "eco" in their company name meant that they were eco-friendly with 0 data to back that up. They also said that all of their chemicals for killing animals were "plant-based" and didn't expand on that any further. Companies can make a lot of money making up BS terms to try and sell you the same thing you've been buying for years. That's a lot easier than finding a new thing to sell you.

But the thing with ordering your own tests is that it is not the only way to get these results. You can simply ask a doctor. They'll order it and help you understand the results and insurance can cover it. Depending on your insurance, that might be cheaper or it might not. There are pros and cons to both approaches mostly centered around how self-driven you want your care to be and whether or not you have a cooperative doctor.

But I would add a general word of warning - raw lab results do need some broader understanding of what the expected results are. They'll typically tell you what numbers are too low/high, but will not tell you what it means if you are outside those limits. For some things, being a slight bit out of the norms is a big deal. For others, unless you are at a few multiples beyond the limits, there is northing to fret over. Knowing which is which is critical to know how to react to test results.

I'm not saying you've gotta work with doctors - I'm saying that they do have a point that self-educated and self-diagnosed patients who learn the info off the internet are not always well-informed. If you are going to go the self-directed route for your health care, take the time to learn deeply and do it well.

It's a little like those ads to sell you a full body MRI. Most doctors recommend against them because you're likely to do more harm to yourself than they actually fix something.

If you're concerned about PFAS, live a healthy life and skip spending money on the testing. Live somewhere with PFAS in the water? Get a reverse osmosis filter. Replace your cookware with something that doesn't contain PFAS. Don't use storage containers for food with PFAS. Check your water bottles.

Then live your life, because until we change as a society, there is only so much you can do.

It's everywhere. We all have it. Why bother.

I think we now know there's no safe level of lead in the blood. If you have suspected exposure in 2023, doctors quantify your lead level through a blood test and if it's elevated, recommend a medical procedure called chelation to remove it.

With PFAS, the medicine is just starting to catch up to the horrors of the news cycle.

But I think in the future, PFAS contamination is going to be treated in a similar way to lead exposure. That is, medically.

But right now, it's easy to throw up ones hands and say, it's all fucked. Why bother doing anything.

Even in your OP, you said you didn't know what to do about it. Neither does the website say much other than basically "lawyer". If there is something I can do to help me, then there is a purpose to the test. This chelation you mentioned.

But again, this should be a "See a doctor first" situation. What are the risks of chelation? Is it safer for me to have PFAS than go through chelation?

The lawyers ( https://www.pintas.com/pfas-class-action-lawsuit/can-pfas-be... ) say there is nothing I can do. So I should sue.

The news says there might be a way soon ( https://www.nbcnews.com/health/health-news/new-way-destroy-p... ) to get rid of PFAS, but nothing about from the human body.

At least the EPA has some suggestions about how to reduce your risk: https://www.epa.gov/pfas/meaningful-and-achievable-steps-you...

PFAS will eventually (slowly) leave your body - focus on not getting anymore, not on removing it. I posted a comment with suggestions elsewhere in this thread.

We have some really old tech that can reduce your levels -blood letting. (... or donation).

PFAS crusader haha.

Edit: forgot the word water

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8994130/

Also: better to save a life and either average down whatever PFA count they have, or bolster their blood volume so they can start producing their own lower PFA infested hemoglobin.

Lesser of evils, and kind of a win win: if everyone was blood letting for the safety and humanity of others.

(While also agreeing with those in the thread saying that high-PFAS donations are likely often better than no donations)

Based on the new clinical recommendations, my 10.86 ng/mL level puts me at elevated risk for preeclampsia (if I were a women/pregnant). Knowing that could mean my BP during pregnancy is more closely monitored, with a BP cuff for example.

Does it though? What will a pregnant woman do based on her results? Will having PFAS affect someone’s decision about becoming pregnant?

Pregnant women are going to monitor BP anyway. And the intervention is $100 for a BP cuff so that’s cheaper than the test. So we’re better off just recommending monitoring BP more closely than this test.

The value we provide: If people want to know, they can now know.

I also think not making the test accessible also has downsides.

What I mean is what would justify someone spending $400. The example of pregnancy is not a good one, as someone is better off just monitoring blood pressure (which is already common advice for all expectant mothers) for $100 instead of paying for this test.

I think value based healthcare is more important when people pay themselves.

Since there’s no intervention based on the results, it’s not a good idea for people until the results are actionable.

What you should not bother doing is replacing your cooking pans because PFAS does not come from that. (Nor does it come from food storage containers or water bottles.)

The first thing to do is avoid paper dishes, no paper straws or any other kind of compostable dishware. The are frequently sprayed with PFAS to make them waterproof, and unless you are buying them yourself and checking you have no way to know what kind they are.

Avoid snowboarding - snowboards (and skis also I think) are sprayed with PFAS to make them slippery. The snow in the area will be covered in it, so just don't do that kind of sport.

Check your outdoor clothing, and kind of breathable clothing that is also waterproof is most likely coated with PFAS to make that happen. This is not just rain jackets, but also active-wear advertised as "quick drying".

Add a carbon filter (any kind) to your drinking water, you don't need reverse osmossis, carbon works fine. And helps for tons of other things you don't know are in there - plus it tastes better.

As a general rule any time you see an object that should get soaked with water stay dry be careful!

>replace my pans

>Get a reverse osmosis filter. Replace your cookware with something that doesn't contain PFAS. Don't use storage containers for food with PFAS. Check your water bottles.

Oh, so all of that would be a good start for anyone and everyone.

The test can help to determine if something, like blood donation, might be a reasonable course of action for a specific person.

This is a great test and a worthwhile addition to our understanding of how prevalent these substances are within the the body.

Any reduction of PFAS in the blood would be beneficial as they are endocrine disruptors.

This falls into the “neat, but what can I do” category and at $400, someone really needs to be into self data.

I have never in my life seen a more flagrant and willful violation of HIPAA. It's the only time I have ever contacted my state AG or the HHS.

I understand the sentiment here, but it's like saying "you should definitely try and find and work with a more ethical political party than the [reader's choice: Democrats|Republicans]". Good luck! It's not likely to happen, even if we all wish otherwise.

Edit: grammer

Don't get me wrong, I would love to have a test available for PFAS levels. However I've previously been denied a test from the medical provider due to the issues I've outlined above. So I think it would be helpful to know if/how they have addressed this problem.

Standard male levels of testosterone are between 3-7 ng/mL.

Standard female levels of testosterone are between 0.1-0.7 ng/mL.

And you're over 10 ng/mL of this crap?

Even if this stuff is a fraction as bioactive as testosterone, having more of it might explain a few societal health trends.

Correlation v. causation isn't all that well known here.

/s

The bush that people are beating around is the question as to whether this stuff is affecting sexual expression of humans en masse.

https://en.wikipedia.org/wiki/3M_Contamination_of_Minnesota_...

Waitlist link: https://pfas.report/waitlist/

There's a whole saga of testing involved:

https://www.michigan.gov/pfasresponse/investigations/sites-a...

https://www.michigan.gov/mdhhs/safety-injury-prev/environmen...

I ended up receiving a few complete blood surveys in the process - comprehensive metabolic panel, hematocrit, cholesterol, testosterone, albumin, bilirubin, thyroid markers, and at least a dozen other medical terms that I don't fully understand, plus what's apparently a more comprehensive PFOA/PFOS study than this one, with dozens of varieties of PFOS/PFOA.

I had a total of 9.8 ug/L in my blood, after drinking water that was 78ppt PFOS for decades.

According to your link, there were tests done by the state in the past, were you unable to participate in those studies?

Your level was 9.8 ug/mL?

If so thats way way higher. I'm sorry.

Edit: grammer

Great. Another reason to regularly donate blood. And you don't even have to pay 399$!

> "Despite all the technical advances in modern medicine, in certain post-surgical situations, we do still rely on one of nature’s most primitive organisms – the leech – to assist us in achieving a good outcome,” says Rod Rezaee, MD, UH otolaryngologist and head and neck surgeon.

https://www.uhhospitals.org/blog/articles/2020/03/how-leeche...

That's what I was wondering, what do you do with this information? How do you narrow down where your exposure came from?

It reminds me of leaded gasoline in the 50s. It's everywhere. Everyone has it in their bodies. What now.

New regulations in California are banning this stuff in food packaging. And EPA just has new limits for tap water that are really aggressive.

So I think it's moving in a good direction.

Since my tap water isn't the issue, and I don't have any obvious other source of exposure, I'm currently focused on how to get out what's already in there.

So the question is whether they need the blood more than you did pre-transfusion. If they did, then you're still commiting a net positive. If not, then it serves them right for requesting a blood donation despite needing it less than did an individual who was ready to donate their own.

Unless the blood is going to research, in which case it is a net positive regardless.

Sorry, but that phrase really annoys me.[0] What does it actually mean?

[0] full disclosure: PhD in organic chemistry

These compounds are not literally "forever" but they have long half-lives once released into the environment, due to the strength of C-F bonds and due to pollutants partitioning into low-degradation-activity environments. For example, a certain compound may be degraded by ultraviolet light from sun exposure, but tend to adsorb to soil where it's shielded from light.

PFAS share a lot of characteristics with the earlier-known "persistent organic pollutants" like polychlorinated biphenyls:

- Polyhalogenated organic compounds

- Low acute toxicity

- Endocrine disruptor activity

- Low rate of natural breakdown in the environment

In fact PFAS of concern share so many characteristics with the historically known PoPs that I am not sure why they got their own phrase "forever chemicals." They don't actually seem to have longer half-lives than those PoPs known by the 1970s.

For further reading, here is a page on PFAS from the Stockholm Convention on Persistent Organic Pollutants:

https://chm.pops.int/Implementation/IndustrialPOPs/PFAS/Over...

And one from the Environmental Protection Agency:

https://www.epa.gov/pfas/pfas-explained

But we choose to use it because a lot of people don't know the chemistry but recognize this label.

Just being able to take blood tests in general to get a better sense of what might be going on can be so informative.

How can you interface with Quest diagnostics like this?

When you say that you are working to expand this to other locations what does this mean? Are you negotiating with other Quest labs?

The test is not approved by the FDA so why can they provide it?

Are you affiliated with the test provider or Quest in any way?

Quest doesn't do the analysis on this particular test - Quest and LabCorp both send them out to NMS Labs in PA who performs the lab work.

We have a doctor we work with and a Quest account.

In other states, testing has been laggard. Which is maybe why some states have "low" levels.

Link: https://pfas.report/waitlist/

Also, I would love to see a histogram of results among the general population, if that can be found in the literature anywhere. I think it would be helpful context for result interpretation and a useful addition to your FAQ.

My levels of PFOS was the highest, that's "Scotchgard". The house I live in has a very expensive reverse osmosis water filter on the tap so I don't think it's that.

I eat a ton of fish (like everyday) and recently read they are a significant source of PFOS exposure: https://pubmed.ncbi.nlm.nih.gov/36584847/

Some of the limitations of the test are you can't tell if this is past or ongoing exposure. Hence my desire to investigate phlebotomy.

PFOS has a half life of ~2.7 years so it could have been there for a while. Source: https://oem.bmj.com/content/75/1/46

Remember the cool ads in the 90s for pants that would repell water and dirt?

Would also be cool to have an opt-in for folks to share their report, location, etc for research purposes.

I went with Grin because they said it's PFAS free. Best I could do.

You are perfectly fine with PTFE dental floss - it has no reactive PFAS components in it.

PTFE, the material, does not contain PFAS in bulk form.

That's the end.

Floss, as a product, could contain any number of compounds related to the manufacturing, packaging and coating.

https://www.questhealth.com

And those are managed by quantifying your risk and taking steps, if necessary.