City of Portsmouth, New Hampshire Pease CAP, 29 Sep 2022

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9.29.2022 Pease CAP

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Hi everyone um on my clock. It says um six o'clock, so I want to go ahead and get started.

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um So good evening, everyone uh thank you for joining um the peace cat meeting. I want to.

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Go ahead and start with introduction, so I want to first start with our cat members.

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um I know up front that karen anderson, tony mcclellan and joe ryan have told.

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Me they wouldn't be able to attend, but I will start down the list. um Andrea amico,.

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Are you on the line? I I thought I saw you on the line.

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I thought I saw her too okay well um I'll circle back to her um michelle dalton.

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Alana davis.

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um Rich deep pimento, sorry d, pimentima um senator mark martha, fuller clark.

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Bill mcclellan.

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Jared shaheen mark sullivan and shelley vetter, I'm here hi shelly hi nice to see you thank you.

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And next I want to go with our cap: technical advisors.

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um Dr scheider shader are you on the line uh yep, I'm here. Okay, awesome, nice to see you, okay,.

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I see you andrea amico, okay, I see you, but so I see you're online okay, hi nice to see you.

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um And next I want to um go through our atsdr folks that are here on the line. I'm just gonna.

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um Say your name just let everyone know your position here um so first I want to start with.

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Dr chris chris ray yep, I'm here associate director atsdr um captain tara summers.

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Hi hi, do you want us to say hi? Yes, just say. Yes, I thought you were saying sorry.

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I'm the national director for atsdr region, one awesome, uh dr katie egan.

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Hello, I am the team wage for the community studies team in the health studies section.

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Awesome. Thank you, um dr miriam havoc, hello good evening hi um dr frank, bovet,.

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Good evening, everyone evening, um I see kim dills on the line.

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Hi good evening policy and congressional affairs also nice to see you and last and not least,.

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um I believe we have our air force. Folks, um colonel holyfield, hey good evening, kurt holyfield.

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Air force secretariat good evening and major um kirk, I'm trying to see if it's all coming through.

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I'm here nice to see you, okay, so is there anyone that I forgot on the line.

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Okay, with that, I'm gonna move forward with our peace study, update.

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um The next item on our agenda- and I want to give it up to our subject- matters.

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um Okay, let's see captain um summers or dr pelvic or dr um bovet.

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Well, I think I'm supposed to give the update. Yes, sorry that is here and um uh first of all,.

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The contract with apt associates has ended, uh they provided us with the all the data.

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And also with a summary report that went over the study, design and methods, so the contract is over.

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So we do have all the data, except for uh those people who participated in new hampshire.

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Piece by a monitoring program who did not give us their results from that program, so we're.

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Mailing doing a mailing next week uh to those people, I don't. I can't remember if they're about.

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300 or so to try to get them to give us their information. They can either send it directly to us.

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uh If they have it, if they don't have it, they have to fill out. uh Actually it's pretty much.

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All filled out already, but an authorization form uh they need to sign, send that to the.

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Health department uh in a pre-addressed envelope with a stamp on it, uh so you.

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Don't have to pay for postage and then the new hampshire health department will give us those.

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Results so they're important for the study, so we're hoping people respond to the mailing.

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um Also, uh the last of the clinical results were sent out. uh I think it was last week or.

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The week before so people should have gotten them. It was the immunoglobulins iga, eg and m.

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And uh a1c with glycosylated hemoglobin for those you know what that means uh that all.

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Was sent out uh to participants so that's it for the clinical results. So the present.

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The participants have all the information now about their particular uh serum results.

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um Let's see, is there anything else, um mary and katie, you want to add anything.

E

Not for me, I think you covered it.

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As frank mentioned, um we we do have this kind of first phase um of of building the data and data.

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Management um that we worked on uh with appton complete, we do have the data set aggregated.

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um We have received pfas data in july.

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um And got all the other clinical data, then in august september, so it's all um very fresh. um Have.

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Received the the sunny results kind of just really last minute, um but uh we did manage to um worked.

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With them and um and get uh get that accomplished by the deadline of uh end of september,.

H

F

So is there any questions uh for us about the peace study.

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Yes and if any members um have any questions or.

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Panels, just unmute yourselves, can't pie crank marion. Thank you very much.

I

um I just yeah, I have a few questions. The first one is: can you just remind the cap why you use.

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Suny, the state university of new york and like why those lab results were done there.

F

You want to take that married or you want me to take sure um so very simple reason.

H

um The analytical plan, as was proposed, especially the parts on immunoglobulins.

H

And some other analytes that have been to sunny um the lab core simply uses.

H

Their their commercial technology required, for example, from children.

H

To measure, because you were interested in looking in immune function right so being able to measure.

H

uh Just those four immunoglobulins, we would have to collect the additional about 8 to 10.

H

Milliliters of whole blood for each child, just for the advanced analysis, so uh that was not possible.

H

For the age groups that we were doing, um the same thing for glycated hemoglobin as diabetes is an.

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Important thing to look at in adults and children, so lead core would require additional four to five.

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Mil of whole blood just for that one test, so we have to look at the non-commercial solutions that.

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Provided analysis in much smaller amount of blood and that's why we needed to find a different.

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Source that- and we have choose sunny, because we have had previous collaborations with them and had.

H

Good experiences with them delivering the results. Great. Thank you for that. That's a very helpful.

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Explanation, my other question is just around the timing of reports and like what can we expect next.

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So I think it's great that you have all the data from apt individuals have all their own results.

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um So now what like? What can we expect in terms of next steps and report back, and you know how.

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And and what you find and how we compare to others in the study and and then also like, how will this.

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How will this be combined with multi-site study data, which I know is the collect data.

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Collections ongoing at those sites. So what can we expect for next steps in a timeline.

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H

So um so yeah, so the so. The next steps on um on this is that we can. uh We can start analysis.

H

Of data for the piece, um so there are two um two major directions that we want to go. First,.

H

That would be the evaluation of the uh their exposure levels at peace and compare it to their.

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Previous levels and to current and hanes, um and uh hence our efforts, you know to kind of boost the.

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Number of people that um that reported those data, since we can't get it directly from new hampshire.

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um State health department by a monitoring program right, um even though we specifically.

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Consented our participants to provide the data on state health department, rejected.

H

That consent their lawyers, so um hence the extra step. Nevertheless, back to your.

H

Question so so two major things that we want to do so one is the exposure doing.

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um You know presenting your results, you know on age sex, uh mostly since you are racially.

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um Boundaries uh sample 96, white right so um will present. uh You know age groups, age.

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Categories for for children and adults, so we are planning to have that paper uh as initial.

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um Draft and manuscript to address that, how that changed from 2015-18 by monitoring can.

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Also how it compares uh to enhance so that's our one prong, um so we're hoping that you know by the.

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End of the year, uh we will have a some sort of draft that will start going through the agency.

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Review and started process like we do for the you know, manuscripts and developments of reports.

H

So that's one part. The second part, of course, is to look at the health outcomes.

H

um That they reported on questionnaires and they'd be verified through healthcare provider. So there's.

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There's three sets of data there because of course they don't match right. People report.

H

Different things, physicians report, different things um also, we have a lot of outcomes.

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And we have a lot of pfas right, so this is a little bit more complicated and we need to do.

H

um So they'll do some preliminary analysis and screen. You know how it looks um of I'll.

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Be working on on the exposure paper and we'll have to make some decisions like how to structure this.

H

um um Normally, as you see, I mean you've been in the area as as a professional for some years now,.

H

So you see from the from the updates you know for nation and for other things that people like to.

H

Publish you know, uh papers on lipids and fifas and heart disease and pfas, diabetes and pfas right. So.

H

um We don't have the luxury, uh I think here to kind of do it piecemeal like that, so um our.

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Strategy at this point is to do overview of health outcome with all pfas kind of screen. It look at.

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The most prevalent ones I mean the sample- has a certain sample size. So there's only about seven.

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To ten outcomes that have more than 30 30 um count right for the adults that has that can be. You know.

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Analyzed in some some more details, the others would have you know, small numbers that would be.

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More appropriate to be analyzed together on the you know, together with the multi-side study right.

H

So um so that's one one way uh um to to to do that. Initial assessment, where we are and what do we.

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um What we focus on so we agreed that we would do an overview of health outcomes right first.

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And uh you know and start developing, um you know based on those initial results. uh Next.

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Year, you know we may start developing some um um collaborations. You know that we would like to.

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See for some individual, you know held outcomes that either are promising or they show signals.

H

Right, those of high interest to you and those that show signals in in the preliminary analysis right.

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um So that um we can focus on things that uh have the most interest or impact you know for.

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Your community, based on you, know having sufficient sample size, so we will not be looking at. You know.

H

Ulcerative colitis because there are seven people right, so it will not be a separate paper uh in.

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January right, um but um so without going into too much detail right so this this these are the two.

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Big prongs that we're gonna do the question is then for for the point of, as this will be this.

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Will be kind of um there's a lot of tables that we're going to generate in this way, and it's long.

H

um You know we'll have to decide if we do it separately, for a child for children and for.

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Adults, so um I think that will be made sometimes early next year or or by the end of this year. So.

H

um So and and as I said, the third part is really to identifying. You know future collaborators.

H

um We will work, you know over the next month or two um to to try to find uh and maybe even.

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Get some funding to identify the person that would focus on neural behavioral outcomes right.

H

Because we don't have that um expertise in-house, um so we would like to engage.

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um You know somebody who who's actually field, that is, uh for the neural behavioral assessment.

H

um um Manuscript, okay, so I just want to make sure I understand um so there'll be like two initial.

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Papers that we can expect one is strictly looking at the exposure and the pfas levels.

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And then one will be looking at an overview of the outcomes. Correct and those two papers will.

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Be coming out potentially the end of this year early next year. Oh, they won't be coming out.

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um There will be there'll be drafts that will start the review. You know process at the agency.

I

Okay, so do we have a timeline as to when us, as the community will be able to read these reports?.

H

Well, that depends not only on us, but you know on on on on others as well on how you know this.

H

Process play out. um We would hope that this would be sometimes in the first half of 2023.

I

Okay, and who are the others that it would depend on.

H

um Well, number of factors here you know.

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Figuring out, if it will be one two or three papers right at the end of the day, you know.

H

So it depends on the capacity that we have in-house. It also depends on the comments.

H

Right that we receive inside the agency, then, as you well know, the agency has to do external peer.

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Review so that takes just a month to send it out, then for us another. You know month just to.

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Review and if there's request for re-analysis that process takes another month right then.

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The actual process of publishing the paper may take anywhere from three to six months right, so.

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That's your timeline for on for seeing it so that doesn't depend on us. The you know the journal may.

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Decide that they don't like it or that you know they won't three analysis of stuff or you know.

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Or splitting the article into or other things so so that process is not entirely under our control.

H

So it's not like exposure assessment report. You know we prepare a report. It goes through agency.

H

Clearance- and you know- and you can project like vended- will be on our website right so so this is.

H

A different process: okay, will the cap get to see a draft? Will we get to comment on it? Sure, okay,.

I

um Once the papers are published, do does atsdr, anticipate hosting a community meeting or you.

I

Know how how are we going to release this information to the broader public.

H

Yeah the the expected- yes, that that's part of of the overall plan that you know once there's.

H

At least two or three of those papers published that we would, we would have a community meeting.

H

And as as I'm saying so, we would we would also you know like to broaden it up. The.

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Spectrum of you know who who is involved on this all right and you know we have.

H

A number of collaborators you know on the multi-site study so depending on you know.

H

The things that we see here, you know will broaden it up, and so in the second half of.

H

23, I think, was the original plan to uh see whether we can have uh such meeting. Okay.

D

Okay and then in terms of how this will fit in with the multi-site study efforts.

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um What is so, I'm assuming atsdr is going to be following the same process or their contractors.

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Will be following the same process at the other sites, where the multi-site studies happening.

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Meeting the different papers and whatnot, but then can you speak a little bit to how? How will all the.

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Sites be analyzed together and, like we probably don't know when, because I know those sites are.

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Still collecting their data and everything but like at the end, when all the studies are done.

I

What is atsdr's plan to analyze all those sites together and could we will? We also expect a.

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Paper on all the sites- oh definitely that's the plan. Chris, do you wanna? Do you want to address.

H

Overall plan or no go ahead, I was gonna, add something to the question before the question.

B

That andrea just asked so go ahead and finish answering this and then I'll put my two cents.

B

Worth at the end, all right all right, so, oh so yeah, andrea, so yeah, that's the that's! The ultimate plan.

H

um Is to you know, leverage our you know: uh data management experience and the work that we have.

H

Done all this year, which is really the the difficult part you know um we have developed.

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You know data dictionary that has 40 sections and we have 5 000 variables right. So um we will.

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Start a process of planning: you know that kind of data management for for multi-side, because it's.

H

Even more complicated because you basically have seven ps trying to put them together so.

H

um There needs to be a coherent plan of how you know those variables, because everybody wants to.

H

Have the things separate but then also you're gonna have everything aggregated as possible.

H

Right so that creates a problem for you how you're gonna handle you know the same variable fields you.

H

Know do you wanna on one hand, you wanna know how many diabetes are in pennsylvania and in.

H

California, at the same time, then you want to aggregate the variable across all the sites.

H

Right so that's a more complicated process than than peace. All right, and it will take longer time.

H

uh To do that, nevertheless, the overarching plan, as as dr bricey, envisioned that's the strength.

H

Of all of that that we will ultimately combine all the exposure data, you know the health outcome, data.

H

In the aggregated data set, so every investigators from all sides will receive the aggregated data.

H

Set right that will will put it together, but all the parts of the consortium will receive.

H

That's of all investigators uh will have access to that and I assume that you know the same kind of.

H

um You know approach uh as we do at peace will appear. You know kind of uh addressing the.

H

Exposure across the sides and contrasting them how they're different across the country right.

H

Because that's your first step right and then heading the overall view you know of of the of the.

H

Of the cohort right, so uh we are envisioning and we have started kind of even putting together now.

H

Kind of the methods paper for multi-site, because the multicide will need that right. So we'll have.

H

Something kind of describing how it came together and then we'll have the description of the of the.

H

Exposure and description of a cohort, like you know how many diseases at each side and.

H

All sides combined, you have so c8 study, andrea, have inquist. You know done something like that.

H

uh Before so, that's what we envision as the first thing that will be we're working already now on.

H

Right to have once the you know, everything is collected and complete before the actual.

H

Statistical analysis of data starts right and uh uh so for for the overall cohort. I think that.

H

Each side, you know each set of investigators have uh uh have their you know, uh have their.

H

um Specific set of skills and expertise and and and and focus on, specific outcomes. So it really.

H

Will be as part of consortium and in consultation with atsdr, you know decided who'll be doing what.

H

So that you know we can start working, you know on you know eight ten papers at the.

H

Same time from the multi-site study on different health outcomes of of interest and importance,.

H

So that's the kind of overarching plan chris. Thank you, yeah. The only thing I was going to add, which.

B

Was kind of to your previous question, andrea, is whenever we finalize a project like the pe study.

B

And the reports roll out we're always going to have a rollout plan and we're going to come and.

B

Meet with the community, uh it may include talking to physicians. It may include.

B

Looking at uh uh using our pesos, our pediatric environmental health specialty units uh uh to.

B

Help get education around the results of the study out, but you know there will be a rollout plan that.

B

That will develop as part of that finalizing the peace study and the rollout of those reports that.

B

uh uh That we'll definitely share with the cat to make sure that we're hitting the right spots. Okay,.

D

That's great, um I just have two other questions. One is just to go back to a previous thing.

I

um Regarding capturing people's health information, I know people signed a consent for you to review.

I

Their medical records through their primary care office, so I'm sure, like you, said, there's.

I

Probably discrepancies where maybe some people reported certain health outcomes, but then you.

I

Couldn't verify that in a medical record, but I'm just wondering what, if someone didn't report a.

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Health outcome, but maybe they didn't know they had it or they forgot. Would you still verify.

I

Their health records like to see if they have that health outcome, just thinking like high cholesterol,.

I

Like maybe someone said, no, I don't have high cholesterol, but then would you still check their.

I

Medical record for that too, or so so, just um to correct you a little bit on the process right so.

H

We have not physically verified or bent over their records right. We don't have their medical records.

H

Right, that's that's just not possible or feasible at this day and age really on this type of studies.

H

Would would we have would we have done? Instead, uh they gave us participant, gave us consent.

H

To check with their primary care provider or provider of their choice or several they didn't.

H

Have to put just one doctor, they could have put more right and we would give that provider. The.

H

Same basically the same thing as people had on their questionnaire reporting, we would gave the.

H

Same thing to the doctor, so even if participants so we went one better than c8 right c8 only.

H

Confirmed those that people reported instead here it pays on a multi-side. We are giving the.

H

Same set of diseases to the participant and to the provider. So if the participant didn't report.

H

High cholesterol, the the the their physician got the question and if they had the higher.

H

Cholesterol, more likely than not they would report that okay, so so that's so I think we.

H

Have more data than c8, it's a little more messy, but at the same time we have more more coverage.

H

Than they had so yes, if they didn't remember or they didn't report, we have number of those that.

H

Their physician reported and participant didn't report and we'll look at that as combined. You know.

H

Because of as in clinical trial intent to treat so any information will get, we will analyze right.

I

And so are you planning to if you do see discrepancies, one way or the other whether the.

I

Participant reported it and the physician didn't or the physician reporting the participant didn't.

I

How are you treating that discrepancy? Are you then, like calling the participant to say, hey, we.

I

Just want to double check, or are you calling your position so how do you factor that into the study.

H

Yeah, that's you know, even even just doing the doing, that process was the most time consuming.

H

Part of of for the staff and for the contract, so no, we we couldn't go back and double check.

H

That just is, is just immensely time consuming and costly, so they'll account for that in statistical.

H

Analysis right so, um as I'm saying in even in the report, we'll analyze it in in all three ways.

H

You know we'll analyze the way participant only reported provider only reported and then reported.

H

By either participant or provider together and then we'll see we'll come up with a picture so.

H

That we can account for that. It's not the purpose of of the study to necessarily hundred percent.

H

Be sure whether the participant headed or didn't have it right then we also have I mean that would.

H

Be ideal right that would be ideal to get that, but uh we're not in denmark right. We don't have.

H

Participant id and we don't have one health care system where all the data are put in and verified.

H

Right, we have 125 insurance companies and and countless providers right. So um so we're not.

H

Going to get that kind of data, but what we can do on both those things that participants reported or.

H

Providers reported, we have additional information to verify or check right. We have their medication.

H

Information right so, for example, if participant says I have hypertension and his provider says he.

H

Doesn't have hypertension and he doesn't take any anti-hypertensive drugs right. Well then, you know.

H

It's kind of not very sure about the participants, have hypertension right, but if participants says.

H

That he has hypertension and, for example, he didn't get his provider confirm it, but he is.

H

On antihypertensive medication that we are almost 100 sure that participant is hypertensive right.

H

So um we also have you know there are measurements in in the office right. We also have the.

H

Measurements for people that, for example, doesn't do not report diabetes. We have their insulin.

H

Levels and their glucose level right so we are, we would be able to to classify participants. You know.

H

Based not only on their report or or participants report, but also on their clinical tests.

D

Okay, thank you for clarifying that sure.

A

Okay, awesome. Thank you for um those responses. Do we have any additional.

A

Questions from our cap members or technical advisors on the line.

C

Hi I had a couple questions. um One question: I was wondering either you.

C

Like once, you've been able to summarize the peak fast levels for the participants and.

C

um You know looking for trends over time compared to the biomonitoring results from 2015.

C

um Are you gonna do some sort of an interim report for the peas community.

C

um In advance of having the peer-reviewed paper published on it foreign, I don't know that could.

H

Be considered, you know, I mean we used to do that regularly that preliminary data we're reported you.

H

Know at conferences- or you know, public meetings with the scrutiny that the government gets these.

H

Days, uh it's not anymore, the you know um current pathway that we're taking. So that is not really.

H

For me to decide how how that will that will go, but in the past that was something that that we.

H

Would do I don't know if we would be able to do that now, yeah, I'm I'm well familiar with how long.

C

It takes to get a peer-reviewed paper published and I just think some of the interim findings.

C

um You know would be of interest in the shorter term for the community. Definitely I mean so for.

C

Some of that, the easier analyzes that don't require the complex statistics- it'd be nice.

C

To have a dinner update, like the you know, the kind of short reports you've created for.

C

The exposure assessments um yeah, but we could, we could look at something like that. Laurel yeah yeah.

C

Okay, great um and then just my other question um for the people who took part in the state.

C

Biomonitoring program that I understand you have to get them to reconsend, to release the results.

C

um If you don't get those back in the mail, do you have a plan to do follow-up.

C

Phone calls or text messages to remind people, and would you do a second round of mailings.

H

No then it's the last stage mailing.

C

So like, if someone moved or something and you didn't have their current address and.

C

They didn't get it. Would you check with by email or phone with them as a reminder.

H

We don't have their emails or contact information for your participants. Oh for.

H

The participants, oh the current participants, you sent out letters to your participants who.

C

Took part of the bible honoring sorry, I was thinking about different different things.

C

So for your participants, if for the people who don't we, I guess, do you know you know who was in.

C

The biomonitoring study, but you can't access their data unless they sign this extra form right so.

D

H

We only have people that I mean.

H

uh I don't know I don't remember on top of my head, how exactly it is we do have. Obviously we have.

H

Their mailing addresses since they participated in, but I don't think we have a cross cross-section.

H

Of of that, I think we we have that they indicated that they were part of biomonitoring. We know that.

H

So that's why we're sending it to those people but as as we said, our contract has has ended so.

H

Our capability of reaching out again and following up are limited at this point, so for the 300 or so.

C

People you sent the letters out to who reported to you that they took part of our monetary study.

C

If you don't get the letter back, you don't have a plan to follow up the second way. Well,.

H

As I said, we have already closed the contract, so we do not have the money uh to follow up on that.

C

Okay and there's no internal stuff, that could do that. I mean it just seems like.

C

It wouldn't necessarily be a heavy lift to send out.

H

Or phone calls? Oh, you know exactly how much uh time and effort it takes. So I do yeah. So I think.

C

It's you know, that's that's not entirely true, so you know we are verb. We don't have. I don't have.

H

10 10 staff and we can't get the interns easily to to do that kind of thing. So I mean we can we can.

H

Try a second thing I mean if we, if you do not hear back, you know it depends on what the response is.

H

Right if you do not have the response you know, um then um then then we will decide on the next steps.

H

Right, you know, so it all depends on what kind of thing is we already have you know it's not like. We.

H

Don't have that information from anybody right? uh We have it from from number of people in.

H

From couple hundred people we do have it right, so we are able to to do the analysis meaningful.

H

Analysis you know on that part right. There are also published data from the whole cohort. You.

H

Know previously, so um you know it's, it's not like we're operating in the dark here right, uh they're.

H

Trying to reach out to those people that didn't provide the information for one reason or another.

H

um And we have took uh um you know we have spent six months uh trying to wriggle this out through.

H

New hampshire state health department right to get to that spot and pressure, their lawyers and and.

H

Figure out like how this could be done right, so um you know, there's there's at some point. They'll.

H

They'll reevaluate, you know what is the you know, cost-effective solution to to continue this or not.

B

But laurel the question is: if.

B

uh We do all these mailings and some of them come back uh uh that uh that wasn't the right.

B

Address and you're asking are we going to try to at least somehow connect with them.

B

If we've got their email on file or phone on fire, am I understanding your question right.

C

Yeah I mean from the 300 people, some of them will you'll get it back and some you won't right. So I.

D

Was just wondering you know yeah doing it? No, you won't get it at getting a getting others. Well,.

B

Look at that I mean it's, it's a fair push, we'll look at it. It just depends on how it you know how.

B

It looks like and a lot of other factors, but I'm not going to close the door on a second follow-up.

I

I think that's a fair ask from dr shader, you know and I think, let's see what we get with.

I

The mailing, but it won't be all of them. We know that so we have their contact information. You.

I

Know, let's yeah, I appreciate you leaving the door open to revisit a second round of trying.

I

To rally that information, because I certainly understand what marion's saying you know, it's.

I

Not going to make or break the study completely, but it absolutely will contribute to the study in.

I

A very meaningful way so doing everything we can to get that consent back would be really important.

I

You know, and I think something beyond one round of mailings, depending on the number of people.

I

um You know, let's revisit that for sure yeah thank you and just I'm sure, you've already.

C

Totally explored this, it has to be a paper copy. It won't accept an electronic consent. The dhhs.

C

So I can jump in here, so we provided actually three different ways for them to respond with the.

E

Information so for participants who have their own results at home. They can send us a secure email.

E

um With those results, they can also mail us directly, a copy of their own results. So the.

E

Authorization form is only for participants who don't have their own results anymore and.

E

They want to authorize new hampshire to send them to us and then they're going to.

E

Mail that authorization form directly to new hampshire for them to give it to us securely.

C

Okay, great well, thanks! It's just a it's too bad that you have to.

C

Go through this whole process to get data that you already asked.

C

For in your consent form, so you understand what happens to lawyers.

H

You see the the participants are volunteering for the study and they decide whether they want.

H

To provide this or not, you know so that that also needs to be respected. You know, so you can't you.

H

Know endlessly call the same people over and over and over again, there's a limit by irb nomb on how.

H

Much you can contact participants and the people, I'm just curious. The people you mailed the letters.

C

Out to are they all people who had signed that consent form initially to say they did consent.

C

To sharing the results, they're, the only ones getting the letters right, yeah, obviously.

C

Well, good luck! I hope you gotta turn around for.

C

A friend yeah, so yeah, but we'll definitely look at.

B

That delta, between what we got and who's remaining and see if there's another way.

B

And we'll be happy to share that information with you guys.

I

Yeah and if if when the letters go out, is it there are someone to share it with the cap? Just so like.

I

It'd be great for me to put something on social media like look for this letter, if you get it.

I

Please fill it out or share your result. You know like if we know, because you said it's going out.

I

Next week, I think I heard so if there's a way to provide us a sample of the letter or something so.

I

We can help raise awareness so when people get it in the mail they're not like what is this.

I

You know, like I already yeah yeah yeah yeah yeah sure, so I got you. Thank you. Okay. So often these.

B

Days what you get in the mail is nothing, and so that's a that's a great idea, so I think we can.

B

We can circle back with you on that andrea. Thank you yep. Thank you. For that sure. Thanks no problem.

A

um I just want to um make sure that do any other cat members or.

A

um Technical advisors, um do you guys have any other questions or any other panelists on the line.

A

Okay, hearing none, um I will go next to audience. Questions.

A

um On the line we have the awesome and gracious miss pam whiten to help us with our tech issues.

A

With zoom so I'll, let her peek on the line to just update the audience. How to ask questions.

G

Yes, thank you. Tara. um You guys can raise your hand if you have a question and I will unmute you.

G

um And you can ask your question verbally: to raise your hand, you can click on the icon on your screen.

G

Or if you're only on your phone, you can press star nine or you can use your keyboard and do alt y.

A

Ep awesome. Thank you, pam um and I'll just pause to see. If you get any questions and.

A

I also want to say that at the end, we can also circle back towards the end of the meeting. If there are any questions that arise at a later time,.

A

Okay, I'm not seeing any hand raises. um Are you seeing anything on your end? um Pam.

G

No, I don't okay. So um with that being said again, we can always circle back towards the ends in the.

A

Meeting um so next I'm gonna go to the multi-site study update dr egan or dr pillback. If you guys.

A

um Have any updates.

E

Multi-Site would go to marion.

H

H

On multicides um we are in about um in about a year into from, when majority of.

H

Sites really started um collecting. um You may recall the first site open last year in.

H

August and besides, try to open all their all their study offices and started recruitment. Enrollment.

H

Process through that fall of 2021, um as you may remember, that it was not well the best time to.

H

um um The the procedures had to be put in place um still for the kobe that didn't want to go away and.

H

um Then we had all sides open in in in january, california started lost in december january.

H

um We really started the year. um 2022 really did only about 400 people through that startup.

H

Period of august through december 2021., um then in first quarter, 2022 of course omicron came in um so.

H

That didn't help uh much either, but in the second quarter and throughout the summer you know we were.

H

Able to um make a great progress at number of the sites and uh and have all sides uh collecting and.

H

Then you know to about over a thousand people in april um two thousand people in july and.

H

um In august, at about the end of august, we had about 2100 people were 2500 people now remember. We.

H

Were on track to be around three thousand twenty nine three thousand um by on thanksgiving or so.

H

um So different different sites have, of course, different communities and different setups. We.

H

Have very large sites like pennsylvania, with great suburban population and and california in.

H

The middle of of uh of the lay basically um and then we have sites that are part of very small.

H

Communities like new jersey or massachusetts, you know small towns um and new york slightly bigger.

H

Towns right michigan to a degree as well. So it's a combination of of small and bigger communities.

H

um Colorado about 70 000, the whole area right that is, you know much bigger than.

H

New jersey, that is five six thousand so um so that has been our primary focus because.

H

uh Because of pandemic, you know we're about a year delayed from from the point of where the.

H

um Where the plan or overall plan uh was likely to be- and uh so we are at this point- reviewing video.

H

Leadership, um our recruitment targets and where we are, uh how are the sites doing and what they.

H

Need uh for the continuation of the efforts um in terms of time and potentially, funding.

H

So these are, you know, difficult questions. The original plan original.

H

Origin timeline for the end of data collection is allowed by ombs may 2023. So.

H

um That is about um five eight months out from now. um So, as I said, we are in the process of.

H

uh Very detailed review side by side of what can be accomplished at each site. uh What the.

H

Projections are, and what are our options in or potentially extending uh the collection.

H

um Or or not um so, situation is different at different sites. Pennsylvania is the first site.

H

That is close already collected or almost thousand adults um other sites or or that are doing well.

H

um Are at about 350 or so and and on the way of uh you know, projecting maybe six seven hundred.

H

uh People through through the original uh period, so um so we are spending a lot of time and effort.

H

um To to understand, needs and the projections and uh and provide do the assessment and see.

H

um Where we are and what we can achieve on through the original period and uh and if.

H

um Any additional time you know could be helpful, all or or possible for um for a.

H

Number of of the sites to be uh to be added, so that's our major preoccupation uh right now.

A

Okay, thank you, dr traffic. um Do we have any questions from our cat members or tech advisors.

I

So the numbers that you were projecting marion, that's just for the seven other sites or were.

I

Those numbers combined with p's, no those were four other sides without peace, okay,.

I

Ability to extend that, I know at peas. We we had to pause for a while we reopened. um Is there any.

I

Consideration, because you mentioned the omicron variant and just different, you know things that.

I

Are probably making recruitment difficult or were at one point? Is there an opportunity to.

I

Consider extending data collections, so I mean um the short answer. Yes, in a sense, we have a.

H

Mechanism how to be able to extend at least from our approval point of view, or that is possible.

H

um The issue is that a number of the sites- you know the um the cost of inflation and.

H

Problems, the the the cost of you know, random and and issues with retaining and training the.

H

Staff are are really uh very difficult right now, so um you know in some places you know.

H

um You know it it probably you know they're in a couple of the sites they're not even considering.

H

It really because they simply ran out of uh of the of the overall scheme and are planning to finish.

H

By the original time anyway, um but we have number of other sites where this would make sense and.

H

um And investigators are eager, they feel that it's needed so we'll. Clearly, this.

H

Is on the table and we are considering it okay, that's good to hear. Thank you.

B

And andrea we've had a uh uh a few internal meetings as to what we can do from our end. To.

B

Get more recruitment and and to get closer to the target numbers from our statistical analysis. So.

B

um uh uh It's a it's, it's gonna be another, uh no stone unturned, type effort.

D

Great. Thank you.

A

Foreign, thank you. Do we have any additional questions.

A

Okay, not hearing any I'm gonna move on to our next point in the agenda. The exposure assessment update.

A

And I believe dr ray there's been a lot of many. You may know the best updates yeah. Well, the the.

B

Exposure assessment is is finished. um The final report was published last week on september 22nd.

B

uh It is up on our website um uh to, if you guys, haven't seen it tara can send it around to you.

B

um uh uh And now they're, working on publications and peer-reviewed publications and and that type.

B

Of work so um uh interesting information in the report and- and you know one thing to note- is.

B

It covers ten sites um if you may remember our test sites for the exposure assessment.

B

Were new york and pennsylvania and that was through our peat program, but it's it's the.

B

Same protocol, the same approach, and so the ea final report includes um the eight sites.

B

That were part of the ndaa and then the two other sites that were part of the peak program.

A

A

Yep I do so yeah. It would be super helpful if you guys could share that report with us. Absolutely.

B

See it and then I just didn't know, is there any like high level findings that you can share with.

I

Us or you know any key takeaways that you know you could share with us on the report. uh So uh let me.

B

Think uh um uh I'm dredging my memory here, andrea uh um one of the key takeaways, is that we found.

B

Pfas levels in excess of the 95th percentile of inhanes in all of the communities that we studied.

B

um uh uh So we definitely communities that where the source of contamination has been.

B

Thought to be a nearby current or former military base that those communities where pfas was used.

B

um uh That the levels are higher than what you see in background levels that we see in in hayes and.

B

And there are some of the uh um uh the p-a-pfhxs I'm I'm pretty sure. I got that wrong, but yeah.

B

That's right, the pfas most commonly found in in firefighting foams. We found that quite a bit.

B

There's also some interesting findings like uh the delaware site uh uh is, is interesting.

B

And and we believe it's it's the result of not only the contamination from the nearby.

B

um Base, but also their uh upstream from the community. What is a dupont facility? I.

B

Think it's dupont, or at least a chemical, a large chemical plant that uses that used pfas, similar.

B

To what you guys have seen in new hampshire with saint romain hmm great, and is there any.

I

Spin-Off work or any additional projects regarding the exposure assessment that atsdr has planned now.

I

That you have gathered this data analyzed, it have been able to identify elevated levels, and you know.

I

Every single community um are there any next steps or future action items or projects as a result of.

I

This yeah so there's a couple of things thanks for asking that um uh uh first we're we have a.

B

Joint study, I think, we've reported out on this. We have a joint study with epa you looking at at.

B

These some of these communities and and looking at other sources of pfas, so looking at household dust.

B

um uh uh I forget everything: that's part of the study, but um but it's looking at you know asking.

B

The question: do we still believe that the main source of pfas is drinking water and what's the.

B

Contributing factor of other sources we're also uh looking at possibilities of doing uh other.

B

Exposure assessments, if we, if we can figure out the funding in communities where the source of.

B

Exposure is not a current or former military facility, but it's some of these other many.

B

Uses that we see out there, you know you raised the issue in one of the previous meetings around.

B

Pfas in synthetic turf fields and and of course, there's been quite a few sites in new england.

B

Where pfas exposure has been associated with with uh biosolids that have been used to treat fields.

B

So we're looking at that also, and then the third part to that which really excites me is, is we're.

B

Starting a process with our uh uh uh uh internally uh we uh and by starting I mean we're just now,.

B

Starting and we uh looking at what is pfas 2.0 look like if you remember, uh uh we published a.

B

Paper, oh about six or eight months ago, on how we at atsdr, see a research agenda for pfas and uh so.

B

We want to build on that and and determine and come up with a plan that we can start thinking.

B

About seeing how we can fund it and seeing how we can build on the work that we've already done,.

I

That's great, um could you guys also share that paper with us, too yep, yep, okay and then rachel.

B

Rogers, andrea, you have haven't you, you haven't met rachel, yeah, yeah, so rachel's the lead author.

B

And then she put myself and pat pricey on it uh uh uh because she's, a nice person.

I

Exposure assessments, when you guys, I know you captured blood in urine for those assessments.

I

Correct but when you obtained information from participants, did you ask any information about.

I

Like food sources like, were they eating fish in the area? You know things like that was that.

I

Information also collected in terms of other pathways of exposure yeah, there was a whole.

B

Questionnaire that came with it occupation um uh uh a lot of different things. I just can't remember.

B

Off the top of my head, but when you see that final report that'll all be laid out for you, okay, so.

I

It kind of it addresses that part too yeah the final reports very detailed. So uh it's not just.

B

A summary report: it's there's information on each site, there's a cumulative summary information. It.

B

Talks about all the different types of information they collected. It's got all the analyzes in it.

B

Okay, so it's it's the complete deal for that part of our pfas work. Great thanks! So much.

I

And exciting that that project has completed, you know yeah. It.

B

Really has been working on for a long time. Thank you. It is yes, yeah.

A

C

I guess just to piggyback or maybe elevate, one of andrew's questions just looking at the data.

C

Here I just googled the report and found it at the washington site had such high levels.

C

Much higher than all the other sites, um I was wondering if, if you were going to think about.

C

Follow-Up work. I guess there should be a health study there. Those are really highly exposed. People.

B

Yeah yeah, the the uh that site outside of spokane um uh some interesting results and- and we I agree.

B

We agree with you laurel yeah and I'm I'm just curious, like what's the community response been.

C

I think do you have a community meeting in each area yeah? So so we we've had community meetings in.

B

um You know, as the individual site reports came out, we had community meetings.

B

And uh uh and then there was a rollout plan that came out with the final report, um I don't.

B

Know if we have any follow-up planned on the community meetings just because I don't remember.

C

Yeah I mean I was yeah. I was curious. I feel like it's one thing to report.

C

To one community and compare them to anne haynes, but for if I were living.

C

In that washington community, you know that's quite it really stands out that.

C

It's so much higher than the other sites right. That's exactly right! Yep.

B

And that was one of the sites that we did later in the process, uh uh and so it was kind.

B

Of interesting, we were kind of seeing the same thing and uh then all of a sudden uh that site.

I

Did they have high level higher levels in their water or was there something.

B

Like different yeah, I don't remember I I.

D

Read the report yep thanks. Thank you. Are there any additional questions.

A

Okay, not hearing any I'm gonna move to our next agenda item the nascent report, discussion and.

A

um Chris, um dr ray I'll, let you take it away yeah. I can take this one so.

B

uh As you know, the nation report came out uh uh first of august and has some very interesting.

B

Findings and interesting recommendations for atsdr uh to consider, as for physician guidelines coming.

B

Forward we've uh we've got people working on it, we've started, we've got the work.

B

uh uh Somewhat done, where we're looking at what nasa, what we have in our physician guidelines and.

B

What nasim says and what's that delta, it's not as far as part as we thought it could have been.

B

um uh uh uh And so we're in the uh uh right now we're working on a draft report that is going to.

B

Have to go through quite a bit of review, um we're using in this first draft we're using.

B

The shortened position guidelines as as the um as kind of the basis for where we're starting.

B

um Because there's it's a lot easier to tackle and we feel a sense of urgency to.

B

Get information out um uh and follow up to the report. uh It's gonna, you know, there's a lot of.

B

Parts of this it's the reviews going to be significant. It will have to go to external.

B

Review, of course, it will have to go through omb to federal family review. Also, since we're talking.

B

About population based testing, it will need some input from the folks at cdc that do that and our.

B

Policy office is already working with us to get that in place um uh and and that's where we are.

B

Today, I I can't provide any more update than that. um uh I I'm not in a position to provide.

B

Details uh uh further details, but we're definitely pushing forward and and wanting with a sense of.

B

Urgency and wanting to get uh a a uh some form of guidelines out as quick as we can.

A

um I just want to open up two questions from our cap members or technical advisors.

I

um Yep, I have a few questions, so the nasim report I think, was significant to.

I

Me in three ways you know number one: it was recommending pfas blood testing for highly.

I

Exposed communities, I don't think we've seen a government agency or federal science agency.

I

Recommend that yet so that was a you know, that was incredibly important and different.

I

um It was also important because it laid out screening level values within the blood for.

I

Pfas and kind of what you do if your blood level falls within these ranges and then it.

I

Also, you know listed out the medical monitoring guidance right, so I guess, if we're starting with.

I

um You know is atsdr planning to adopt these guidelines or they're just reviewing.

I

The guidelines to determine, if they're, going to adopt them, like, I guess, I'm just looking for a.

I

Commitment are you challenging any of these recommendations, or do you agree with them.

B

So I uh it's an interesting document. You know it's you're you're asking me.

B

To give pre-decisional information- and I just can't do that at this stage- andrea.

B

um uh uh We are looking at the guidelines we're looking at how we can implement what is in there.

B

And then there's going to have to go through a lot of it's going to have to go through some.

B

Review in order for us to get to where you want to be okay, and but I just want to be clear, atsdr.

I

Funded this work through the national academies right so like this was something yeah. Whenever you.

B

Do work with nasim. You always have to provide them with money, so we in niehs co-funded this.

I

Okay, and so um can you speak a little bit more to the review internal review process? That's.

I

Going to happen like who who's part of that team who's. Looking at that- and you know you mentioned.

I

Cdc being involved and omb and like can you just like walk me through a little bit more about what.

I

Happens so atsdr receives this report from nason yeah, so we have our normal review process that.

B

Okay in in our normal external review process, and then whenever we do uh work like this, it has to go.

B

To omb and they share it with the federal family, so we'll get input from niehs from epa.

B

um uh Usda fda all the federal players in the uh um in the federal space for pfas, just like.

B

We do with uh our talks profiles and, and then we also will consult with cdc, because.

B

Of the some of the tests is population-based testing and they're the ones you know, atsdr.

B

Is not an agency that typically recommends population-based testing, and can you just.

I

Define population-based testing? What do you mean by that individuals getting their blood tests.

B

Right there there there's they're they're now with the nation report. The recommendation is.

B

You know, there's the two and twenty and and what type of testing should be occurred and.

B

And that people would who are concerns should talk to their doctor about getting tested, mm-hmm.

I

Sorry, htc artist.

B

S so population-based testing there's a whole preventative medicine group that.

B

U.S preventative medicine, council. I can't remember marion and frank you may know it.

B

um But there there's a whole. They recommend that type of the procedures for that type of testing.

B

And so we we will have to get guidance from them uh through this process. Okay, I I don't see it as.

B

In andrea, I don't see it as a as a hindrance. I we see it as a as is just part of the process. Okay,.

I

Quickly, so do you have an estimated timeline? It sounds like there's lots of players that are going.

I

To be involved in this, so do you have an estimated timeline as to when atstr will have revised.

I

Guidance that will be public to communities and local physicians and things like that. It's hard.

B

For me to to put a finger on that right now um uh and and we've been working with our policy folks.

B

On that type of information, I I will say this that before we, uh uh when we talk to you a long time.

B

Ago about this, it wasn't that long ago, but uh you know- and we didn't know anything about what was in.

B

The report we were saying it could be up to a year. Well, we're not, we don't think, that's we're not in.

B

That ballpark anymore, okay, we're talking months and not up to a year. Okay, that's good to hear yep.

I

Okay um and then I guess my only other question would be once the report is revised.

I

What does outreach look like for hsdr, because you've now done work in multiple communities, not.

I

Just peas, but exposure assessments help multi-site health study. You, you know what is the plan to get.

I

This information, or get your revised guidance out to community in communities as well as like.

I

Local physicians right so they're aware of this information and they can order blood tests and.

I

They can monitor their patients and um because this this is obvious, this is a big change of a big.

I

But much needed change, so um I'm just curious what outreach looks like for you, folks yeah, so so we've.

B

Already started thinking about that, it's it's definitely gonna. Take our outreach in areas like.

B

This to a new level, because there's we're gonna have to go and talk to physicians and do more.

B

Training and and health care providers and and uh there's a lot of pieces into whatever we come.

B

Out with that is going to require that you know we would be remiss if we just put it out put it.

B

Up on our website and don't start going out very aggressively and talking to people about what's.

B

There do you see opportunities to work with the state health departments too, so they can also help.

I

um You know help with the outreach and potentially revise some of their state guidance as well.

I

um I think some of them- I can't speak for all of them, but kind of defer to your current guidance.

I

You know so um yeah our first step on that is always through our apple tree.

B

Grant program our state grant program, and so we'll start there. uh The nofo for that.

B

Just came out we're expanding the program this year. uh uh I think we're targeting.

B

30 34 uh states and territories rather, whereas when a few years ago we were just in the you.

B

Know mid-20s so we'll start there, because we already have that relationship in place and.

B

And they're used to working on us with that and then we'll build off of that, but absolutely yeah.

B

The states are going to play an important role with whatever we do in this space. Great thanks.

D

Those are, I guess, my initial questions. I don't know if other people have questions. Yes, if you.

A

Have any additional members have questions? Just please don't make you unmute yourself.

C

um So, um just in terms of the deliverables, so you said that you're working on a report.

C

So would there be a report and then sort of the guidance itself and the report would explain the.

C

The rationale behind it just wondering like what the final products are. If you go on our website.

B

We've got that 20 page physician guidelines and then we've got the shortened version and so we're.

B

Starting with the shortened version, because we we feel like we can get that out quicker than going.

B

Through the whole long process that long that whole 20 page thing took a long time to get out.

B

And uh uh so that's why we're starting with the shortened version at some point in the future.

B

uh uh We will make a decision whether we want to do another long version or not, and what that'll.

B

Look like, but we feel like building off the shortened version that we have as kind of a format.

B

So, to speak is is, uh is the right way to go? We've we've got a new product, atsdr called clinician.

B

Briefs and if you go on our website, you can find one for radon and I think we just published.

B

One on ethylene oxide and and that's a again getting getting more towards instead of having.

B

20 pages, which is hard to get a position to read, having something, that's more concise and you know.

B

It's it's like position, guidelines developed by physicians to make sure physicians read them.

I

So, do you anticipate using that same model for this too, like so so we're developed for a.

B

Different reason, but it will give you a flavor of how we're looking differently as as to how we put.

B

Out medical guidelines in in brief clinicians on substances, environmental substances that.

B

Are of concern to communities? Okay, so just saw my understanding so as a starting point.

C

You're, starting with your shorter version of the clinician guidance. And when you talk about the.

C

Report is it that updated one or is there a report that would have kind of accompanied with that.

C

Looks like so I wonder how much you have to write. Is it just the guidance itself or do.

B

You have to write about the guidance yeah yeah, so I the the shortened version, will probably be.

B

The first thing out of the gate, and that's that's because again getting the information to people.

B

As quickly as we can considering the processes that we have to go through to do things like this.

C

That's great and are you working with and getting input at all or part of your dissemination plan.

C

With the yeah yeah, so local association of like american academy of pediatrics, like all.

C

The medical associations, yeah yeah, absolutely, and that's where why I mentioned working with.

B

Our policy folks they're they're, the ones that help us with those critical partners. You know.

B

Asco helps us with will help us at some point in the future. In this, with our outreach to states.

B

And, of course, we're connected very closely with aap through our pesos and uh and they're actually.

B

Meeting with the pesos uh this week in chicago in in in the nascent reports on the agenda. But.

B

Yeah, we'll we'll be uh we'll be looking at all of those other related groups to get input from them.

C

Input from them, as you work on the report or just for the dissemination.

B

uh uh Depending on which group you're talking about it could be one or the other, but.

I

Yeah, so is it? Is it going to be a team of people working on this for atsdr, both within.

I

Eight history, as well as external, like I don't mean just the reviewing of the federal family.

I

um Who's going to help with this, is it just atsdr folks and then you're going to let other people.

I

Read it or is there a team being compiled of different professionals who are going to all.

I

Work on this together, so you know I want to get a kind of a a draft that we can start sharing and.

B

Kick around instead of getting together a bunch of people who may or may not be atsdr in a room.

B

To create something okay and so right now we have we're working with our the people in atsdr who do.

B

This work: okay, okay, yeah and, and then once we have that draft, it makes it easier to have the.

B

And quicker to have those discussions, they have something to react to versus us having getting.

B

You know I don't want to get bogged down in these conceptual discussions about things.

B

Okay, now that helps to understand so atsdr is going to draft a revised version first and then.

I

Collaborate with other people, external to atsdr, to give guidance or comments or, however, you know.

I

Okay, I know in the past um our cap was able to look at the physician guidance.

I

And give feedback. If, if I would be happy to look at a draft as well and provide.

I

Comments from the community perspective, if you're open to that absolutely thanks.

I

And I just want to say I thought nasim did a really nice job on this, not only because I think.

I

They listen to communities and they looked at the science and made good recommendations, but I think.

I

They did a really good job in how they engage with the community. They created a community.

I

Liaison positions where they took in a lot of people and in that role and then they hosted the.

I

Town halls three different town halls all across the nation and I felt like they did a really nice.

I

Job of hearing from different people getting different perspectives and then really just.

I

Listening you know and and putting out guidance that was very much needed for communities, so I.

I

um Applaud mason for their efforts on this. I think they did a really nice job and it.

I

Was great to work with them as a community liaison on this project too yeah. I totally.

B

Agree with you, andrea, you know one of the. What I like you know, we all take what we liked out.

B

Of it, you know what I liked is the way they synthesized the health information on pfas and.

B

You know in those three buckets of this is what we know. This is what we think we know.

B

And I'm I'm overly simplifying, so excuse me- and this is these- are the areas where we need more.

B

Research or information- and I I thought that was a huge benefit for how we look at pfas.

I

Ing was here because, that's if you talk to communities, that's what they want. You know.

I

They want to be able to quantify how much is in their blood, they had no say.

I

In being contaminated, so they want to say in identifying how much and figuring out how to.

I

Monitor their health, and so that was a huge missing piece for a lot of communities and.

I

um This was incredibly validating and needed, so I just big big step in the right direction: yep yep.

H

What I missed from the nation report was that he didn't address and left it open how how the.

H

Physicians are going to order those tests, who'll be paying for those tests and what labs will do.

H

The tests, so it's chris correctly, pointed out the states will have to step in if this has to.

H

Go anywhere because at this point, the physicians, the recommendations that the people should go.

H

And ask their physician to order the test. The physicians can't order the test right. There's.

H

No icd code for ordering the test, no insurance will they'll cover it, and even if you want to.

H

Pay it by yourself there's no labs generally available. That will do them. So I find that a.

H

Very glaring uh omission from that recommendation that it doesn't show any pathway in implementing.

H

That and leaves that to atsdr or cdc or others to figure it out. So a couple things: marianne, there.

I

There actually are quest lab is a lab that folks are working with, and they've partnered with nms.

I

And there are cpt codes that can be given. I know. Pfas reach has published a document on how to.

I

Obtain pfas blood testing and it lists the codes and then in new hampshire. Our state legislature.

I

Passed a law that new hampshire insurance companies have to pay for pfas blood testing.

I

So in the state of new hampshire, it is covered by insurance. I did that I did not know that yeah.

B

It is a law in new hampshire. If you're a new hampshire insurer, you have to pay for pfas.

I

Blood testing um so yeah, so we you know, I I hear you marion. I think that is, you know. Definitely an.

I

Area that needs improvement and I think it goes beyond um you know it's you're right. We need more.

I

Labs, we need physicians educated on how to order these tests for sure, um but this the fact that.

I

Someone's just recommending it is like the first step because to get the labs to be able to provide.

I

This you know this service or get the physicians educated. We didn't have anyone recommending it.

I

So it was like we couldn't get people to do that so now that we have recommendations from nissan.

I

It's like we have another step to do for sure. You know it doesn't end here, but having this.

I

Guidance, I think, carries a lot of weight and it allows for more advocacy and opportunities.

I

To create the pathways to have this done, but I just wanted to make sure you knew that quest lab.

I

Does it through nms there are cpt codes and new hampshire insurers do pay for p5 blood testing.

I

And and they're experience and we've run across other labs in other parts of the country that.

B

That will do it commercially. uh uh You know when we when we got our our brief from nasim on the.

B

Report, you know they, they said just what you said andrea. You know this is this. Is uh we wrote this.

B

From the standpoint we well, they said we wrote it from many different standpoints, but one of.

B

The standpoints was from the communities and, and- and the other thing they said, is that we realize.

B

There are some challenges with our current how things are currently across the country, but this.

B

Is a step in trying to build a different path uh uh uh going forward so correct yep? I agree.

A

Thank you. uh This was a great discussion. Do we have any additional questions from our.

A

Cat members, or for um from our technical advisors.

C

I'll put in the chat or two people each documents um with information, we have one, that's a general.

C

Guidance about how to order pfas blood tests and we do have the cpt codes for the quest test. There.

C

um And then another one that provides um information about specific labs which.

C

We're seeking to keep up to date so we're always happy for information about updates.

C

um It certainly is limitation, there's not a lot of labs that offer the testing and it's.

C

Not always easy to offer the testing and you meet a doctor who's willing to order the testing.

C

um But I'm hopeful that, with this guidance out there, that it will become an easier process and maybe other states will follow new hampshire's.

C

um Step of requiring chairs to pay for this, it doesn't mean that every doctor will order it, but.

C

um I think I think it will become easier, so I'll put those links in the chat.

B

Or if you could just laurel, if you could just email them to tara.

B

um Yeah and then we can disseminate them through our pfas community of practice. Here.

C

Okay sure thing, um and then the other thing I'll add, is that um our peak ass reach team.

C

In collaboration with some of our science advisors and andrew's, part of our team.

C

um Created a webinar for medical professionals that offers cme credits um got a whole bunch of.

C

Presenters as part of the webinar linderbornbaum allen duckettman, we have community voices our core.

C

Pfas reach team researchers, including myself and phil brown and courtney kerrigan as well.

C

As community partners, including andrea, um created this webinar for medical professionals about pfas.

C

It talks about medical screening um and he fast blood tests and provides a pretty comprehensive.

C

Overview of health effects linked with pfas, we, we were pretty much done with it and then.

C

The nissan report came out, and so we made some updates um to reflect the parts that needed to.

C

Be updated and um that's now available, we just I just googled it today. It's actually available.

C

Online now that course so I'll also include that update. um It just came out this week.

C

So we're still working on a dissemination plan, but that's another resource that we'd recommend.

A

Thank you. Thank you, dr shader, for that um do we have any additional questions or comments.

A

Okay, not hearing any. I wanted to again open up questions from the audience.

A

And so I'm gonna have pam again just come online and explain how to um ask your question.

G

Sure um the audience can raise their hand and then I can allow them to unmute themselves. uh You can.

G

Click, on the rage hand, icon on your screen or, if you're only on the phone. You can press star nine.

G

And also on your keyboard, you can press the alt y keys.

A

Thank you pam um again I'll pause here just to see if anyone raises their hands.

A

Okay, I just want to double check pam. Am I missing anyone.

G

No, I don't think so. I don't see any hands raised. Okay, awesome! Thank you! Pam um now, just before you.

A

Wrap up, I want to open it up to our cat members and technical advisors. If there is any general.

A

um Questions or comments.

I

um So I just have two two questions. um One is regarding how the nation guidance may impact.

I

Health assessments that atsdr has already done. This is a question that has come up.

I

Through different communities that have had health assessments done already by hsdr and.

I

The kind of the conclusions that we're drawn because of them um and I'm just curious if.

I

There's opportunity once atsdr revises their guide, physician guidance and now that we have screening.

I

Levels and pfas blood testing is recommended. Is there an opportunity here to go back and do.

I

Some all additional work on some of these health assessments that maybe said if you're below 70.

I

Parts per trillion, that's you know, and there was no risk and we don't recommend you do anything.

I

Different, um would there be any and also I guess that would play into the epa's health advisories.

I

Which are obviously much lower than 70 now and they're working towards an mcl. So now that, like.

I

There has been some significant and changes in pfas, whether that's you know the nascent guidance.

I

Or the epa health advisories is there opportunity for the health assessments to be revised and.

I

Different recommendations to be made, or even just different conclusions to be drawn because in some.

I

Communities, the health assessments- that's the only thing they have with atsdr. You know they're, not.

I

Part of the exposure assessment they're, not part of the health studies. All they have is a health.

I

Assessment that really hasn't recommended a whole lot for them, and so um just wanted to put that out.

I

There and see if atsdr is thinking about that and if there's opportunities for additional work there.

B

I I don't so I don't know the answer to that: um uh let's, let's table it and get.

B

Back to you on that andrea, um uh I just don't know and- and I suspect, there's some.

B

Precedence with how we've dealt with lead over the years um uh at atsdr, you know something that.

B

We've looked at quite a bit and the exposure levels and the uh uh levels in water and the.

B

Levels in in your blood have gone down over the years, and- and I I we I'd, have.

B

To go back and ask our policy people, what's the what's the protocol, we do on things like this.

G

I I certainly see the logic to it. I'm not arguing the logic I I just need. I just don't.

B

Know what that answer is okay, yeah and I think finding out that answer, but then also finding.

I

Out, like does it mean if a community already has a health assessment done with hsdr, and it's based.

I

On the 70 parts per trillion from the epa- and you know yeah like with that community- would.

I

You automatically do that addendum or would that community need to re-engage with atsdr.

I

And make a formal recommendation to have you come in and revise their health assessment so.

I

um Yeah, just understanding like you said, if there's a precedent and if and if communities want.

I

To re-engage on this, like what is the process for that yeah or if there isn't even one needed or if.

I

You would just automatically do it: yeah, yeah, okay, okay and then just the second thing I wanted to.

I

Bring up and it's something I I bring up at all of our meetings, but you know really just continuing.

I

To advocate for a longitudinal studies, um you know here at peas. I think you know it's important, that.

I

We've had the health studies we have two sets of you know pfest blood tests now, um but you.

I

Know I think the concerning part is how pfas will affect us over time, and so I appreciate the the.

I

Peace study and the one-time snapshot that we're getting with that. The cross-sectional study.

I

But I just want to continue to advocate strongly for longitudinal work here, so we can follow people.

I

Over time I I know we didn't hit our recruitment goals, but we still got a lot of people. You know.

I

Who came back for the study money many years later after the contamination had been discovered.

I

um And we have people in our community who have been highly exposed and you know I I can speak.

I

For people that I've heard to have heard from that have health effects or have abnormalities in their.

I

Labs in their kids labs that they're concerned and really want to see how this is going to play out.

I

Over time- and I I know that we're analyzing the data and you know working on reports.

I

um I just you know, I guess the more time that goes by the less and you know, people pay attention and.

I

um I just want to say that if we're going to do something longitudinal, it's not something.

I

I want to wait years to come up with another plan which will take another few years to you.

I

Know develop and get funding like I'd like to proactively work on this now, if we can and so.

I

I bring this up often at our meetings, because I think it's important and I would just love.

I

To know kind of where hsdr is at with this um and if they're thinking about it or if there's steps.

I

Being put in place or anything, you need from the community to be able to make this a reality for us.

I

B

Is there a question or statement, I'm sorry, yeah. The question is like: are you planning.

I

To do anything longitudinal at peace, okay, got you got you. I got you, okay, I'm sorry.

B

um uh It's uh so, as we've always said you know, once we see the results from the multi-site, uh we.

B

Think that may be a good place to start with that and and we're getting closer and closer to that.

B

um Well, you know: longitudinal studies will require resources that that, and so we'll.

B

Have to figure that one out also, but uh it's not off the table, it's not it's not something.

B

That we've decided we're we're not going to even think about or consider. We definitely.

B

Are it's a great push? It's just. We we've always said we want to see more of what we get out of.

B

The multi-site study, but so so for the peace community. We, even though we'll have our data.

I

Well, before the multi-site study, you won't make any determinations on long-term studies until.

I

You have the multi-site data, I don't think so, but let me talk to pat on that one: okay,.

I

And I mean I think, in terms of funding, we've been very fortunate. You know that we have had.

I

Congressional support who have been able to prioritize funding for these things, and so.

I

um I'm not saying they're not a problem, but we we have been very fortunate that there has been.

I

Funding for these efforts, um not you know, exposure assessment, multi-site study, peace study so.

I

um I'm grateful for that and it makes me hopeful that funding potentially won't be.

I

A barrier for you know it's, I think it's more getting the willingness from hsdr. First, you know.

I

um And so I hope that you see the need just like we do here in our community and many.

I

Other communities that you know pfast is something that's going to affect humans over time. It's not.

I

A one-time thing, I think the one-time thing is a very good start, but the reality is like this.

I

Is going to affect people over their lifetime, and we should be wanting to learn more about.

I

The effects over time, and not just a one-time snapshot so just want to keep pushing for that.

I

Yeah and I'll tell you this andrea um that uh you know I talked about earlier. The the.

B

Work we're doing on on defining. Where do we go next, with pfas and and building off our.

B

Research agenda: you know, that's something that that when we charge the group to do the work.

B

That they're going to be, you know, that's going to be one of the things they'll consider okay,.

D

A

Thank you. um Do we have any additional general questions from our cat members or from our technical advisors.

A

Okay, hearing no okay hearing, none, I'm gonna push to wrap up this meeting again. I want.

A

To thank you for all the cat members, cap, tech, advisors, um the air force members, our.

A

Atsdr staff and the community members, of course, for joining us this evening.

A

um Hopefully, you guys can go and enjoy the rest of your evening, but again thank.

A

You thank you thank you for joining us and I hope we hope to see you guys again soon.

H

Yep, thank you very much. Yep all right thanks. Everyone good night.