Poling vs HHS – Something is definitely beginning to smell

30 Apr

Back in March I wrote a post highlighting my suspicion that we weren’t getting the whole story regarding the Poling’s. They had – at that time – failed to give permission to Dr Andrew Zimmerman to discuss the case, despite the fact that he was deply involved in the treatment abd diagnosis of Hannah Poling. He has still – to the best of my knowledge – not been given permission by the Poling’s to speak.

I also blogged Jon Poling’s own words on the subject of document release:

The HHS expert documents that led to this concession and accompanying court documents remain sealed, though our family has already permitted release of Hannah’s records to those representing the almost 5, 000 other autistic children awaiting their day in vaccine court.

and pointed out the strange incompatability with what the _court_ said:

in the case that is the subject of the media reports, if the parties who supplied documents and information in the case provide their written consent, we may then be able to appropriately disclose documents in the case.

where it is made crystal clear that the Poling’s had not in fact provided written consent to release their documents.

Further documentation from the courts has now been released which touches on this issue in more detail.

I want to thank M who can choose to name themselves further if they feel like it for helping explain these and for highlighting them in the first place.

The basic gist of this document is that *the Poling’s do not want all the information to be released* despite their oft-repeated claim to the contrary. What information do they not want released – and why?

Respondent points out in the filed Sur-Reply to Petitioners’ Motion for Complete Transparency of Proceedings (R’s Sur-Reply) that while petitioners “did undertake initial steps
necessary to permit discussion of their case before the Special Masters presiding in the Omnibus
Autism Proceeding and before representatives of the Petitioners’ Steering Committee[,] *[i]n fact,
it is respondent who first approached and asked for petitioners’ consent to permit the Secretary of
Health and Human Services to disclose medical information regarding this case* in order for the
Secretary to address inaccurate statements that were being made publicly concerning respondent’s position in this case.”

Now _this_ is a bombshell. It was _not_ the Poling’s who first wanted to release documents, it was HHS. They asked for the Poling’s consent to permit HHS to disclose medical information in order to ‘address innaccurate statements that were being made publicly’.

Well, well.

And there’s more. HHS had also heard aboout the press conference the Poling’s intended to hold:

Having received no response from petitioners, respondent contacted petitioners’ counsel to inquire about the proposed consent form and to “inquire whether press reports were true that petitioners were planning press conference for the following day.” Petitioners’ counsel replied to respondent, and represented during a status conference in this case, that the reports of a planned press conference were not true…….and two days later they held a press conference and appeared in
nationally televised and print interviews discussing the case.

So they lied about the press conference too. Petitioners Counsel is, of course, one Clifford Shoemaker.

What is going on here? Granted there are pre-conditions HHS also wanted placed upon the release of information but why won’t the Poling’s let key medical details that would ‘address innaccurate statements that were being made publicly’ be released right now? Why do they claim that they are asking for complete disclosure when it is clear they are not? Why did their counsel blatantly lie about the press conference?

This is very much an example to me of the ‘muddying of the waters’ that John Shoffner talked about recently.

53 Responses to “Poling vs HHS – Something is definitely beginning to smell”

  1. century April 30, 2008 at 08:55 #

    “This is very much an example to me of the ‘muddying of the waters’ ”

    More like an example of you trying to muddy the waters!

    You are very selective (as usual) with your quotes – but that is as expected

  2. Kev April 30, 2008 at 10:36 #

    Come off it Schwartz (I’m going mad(der) I meant century) – of course I’m selective with my quotes. I’m quoting what is pertinent to the point I’m making. Why would I do otherwise?

    And feel free to actually discuss the points I’ve made, or other points from that PDF.

  3. kristina April 30, 2008 at 13:04 #

    A great deal of the document is devoted to defining what is meant by “information.” Mention of the petitioners and the actions they seek to take, and of the respondents’ actions, are minimal, so the point quoted in Kev’s post is significant in regard to the meaning of the document in the understanding of the Poling case as a whole.

  4. isles April 30, 2008 at 15:51 #

    Stinky indeed. People who get a windfall from the government have a lot of nerve turning around and misrepresenting the facts that led to their receiving it.

  5. Matt April 30, 2008 at 18:34 #

    I find it interesting that the special master referred to the Poling motion as a ‘styled” as a motion for complete transparancy. It doesn’t sound like the court is buying into the perception that the petitioner’s council is attempting to create:

    Subsequently, on March 4, 2008, petitioners filed a motion styled as “Petitioner’s Motion for Complete Transparency of Proceedings.”

    And
    As a practical matter, petitioners’ request for disclosure of the two Rule 4 Reports in this case (styled originally as a motion for complete transparency) is moot based on an earlier unauthorized disclosure.

    This second one was interesting to me. They are noting that the petioners are asking for something that they already made public–the Rule 4 report that was blogged by Mr. Kirby.

    They also note:
    While petitioners’ executed waiver permits a discussion of the medical records filed in this case, the waiver does not extend to the actual release of petitioners’ medical records.

    So, the idea that the Poling’s have waived access to their daughter’s records is, perhaps, the truth but not the whole truth?

  6. Ms. Clark April 30, 2008 at 20:21 #

    So people are allowed now to discuss Hannah Poling’s medical records but not allowed to see them? Which means, people like Kirby can say that they’ve seen her medical records and say what’s in them but we couldn’t check to see if that’s what the medical records really say?

    Matt, I think the PSC is on to the Poling’s methodology. For one thing the PSC asked about that news conference and if I understand the document, they were lied to regarding it, by Cliffy, the guy who tried the SLAPP-style subpoena of Kathleen Seidel. And now they seem to see that there is only the appearance or “style” of the Polings wanting transparency that the Polings themselves, and people like David Kirby who seems to be in close contact with the Polings and Cliffy, are blocking transparency.

  7. MJ May 1, 2008 at 00:45 #

    Good job muddying the waters. You forgot this little nugget from page 5 :

    “Petitioners’ counsel stated … that petitioners would only provide their consent to the disclosure of medical information if respondent consented to the public disclosure of the Rule 4( c ) reports filed in this case”

    Or in other words they will allow the discussion/disclosure of the medical records IF other information were also released. That sounds reasonable to me.

    You also failed to note that the motions filed by the government are in opposition to releasing the Rule 4 reports contending that the “petitioners lack a legal basis for their request”. Which I read to mean we don’t really want them to be distributed and this was the only way we could think to oppose it without saying that we opposed it because of the content.

    As for your “bombshell” the way that it appears is that the government was the first one to want to disclose – that theory doesn’t hold water. They wanted to disclose select portions of the information without disclosing it all.

    Specifically from the text :

    “it is respondent who first approached and asked for petitioners’ consent to permit the Secretary of Health and Human Services to disclose medical information regarding this case in order for the Secretary to address inaccurate statements that were being made publicly concerning respondent’s position in this case. … [the] petitioners would only provide their consent to the disclosure of medical information if respondent consented to the public disclosure of the Rule 4( c ) reports filed in this case”

    Which lead to the entire ruling that you are quoting wherein the family is attempting to obtain permission to release the Rule 4 reports and the government opposing that information being released.

  8. Schwartz May 1, 2008 at 02:27 #

    Kev,

    How do you interpret this part?

    “in fact, it is respondent who first approached and asked for petitioners’ consent to permit the Secretary of Health and Human Services to disclose *** medical information *** regarding this case in order for the Secretary to address inaccurate statements that were being made publicly concerning respondent’s position in this case.”

    That sure reads like a one way disclosure, not a bi-directional one.

    The respondents only asked for permission to release medical information. It does not say they offered full disclosure. The Petitioners are asking for full disclosure and public discussion of all records including respondent’s Rule 4 reports which they did not offer.

    Additionally, I think that only one of the two Rule 4 reports was disclosed. I haven’t seen the second one filed in Feb.

  9. Matt May 1, 2008 at 07:44 #

    You also failed to note that the motions filed by the government are in opposition to releasing the Rule 4 reports contending that the “petitioners lack a legal basis for their request”. Which I read to mean we don’t really want them to be distributed and this was the only way we could think to oppose it without saying that we opposed it because of the content.

    I think you read this incorrectly. The petitioners “Lacked a legal basis” because they were trying to claim that the 4c reports were not “information”, and, thus, not inlcuded in the law restricting disclosure of “information”.

    They don’t want a major precident set that would change the structure of the way the Court has operated–especially since this would be against the intent of the law which set up the Court.

    As to whether the argument “holds water”, the government wanted to correct misinterpretations that were being made (by whom, we could speculate). That was due to a unilateral disclosure of information–most likely from the Poling team. People want to dispute that for some reason. It is the most likely explanation. No where is there a comment even implying that the Polings or their lawyer were unhappy with the leaks.

  10. Kev May 1, 2008 at 09:11 #

    _”Or in other words they will allow the discussion/disclosure of the medical records IF other information were also released. That sounds reasonable to me.”_

    The Rule 4 reports are two documents. The first one has already been leaked. The release of the second, as Kristina points out:

    It is noted in passing that, due to an “earlier unauthorized disclosure,” the petitioners’ request that the two Rule 4 Reports be disclosed is “moot.”

    Thus MJ, me mentioning that would’ve been pointless as it doesn’t matter.

    Schwartz – same applies to you really. The Rule 4 reports are the one leaked to David Kirby. One is already ‘out’

    As to the nature of HHS release – that seems wise to me. Lets be honest. What we’re talking about here is Hannah Poling’s medical status, before, during and after her vaccinations. Thats what HHS want to release. Thats what the Poling’s don’t seem to want to release.

    Why? Why wouldn’t they want to release documents that would clear things up further? Why did their counsel lie about the press conference? Why have the family *still* not given permission to Andrew Zimmerman to speak freely?

    Sorry, but it seems very much to me that the Polings do not want clarity regarding their daughters medical records. When I tie this in with the opinion of Drs DiMaurio and Shoffner (Poling’s co-author on the Poling case study) that Poling is not drawing legitimate conclusions and that HHS conceded needlessly then I see something very wrong with this whole picture.

  11. Matt May 1, 2008 at 19:04 #

    What we’re talking about here is Hannah Poling’s medical status, before, during and after her vaccinations. Thats what HHS want to release. Thats what the Poling’s don’t seem to want to release.

    What we are talking about is ‘half’ the story–the HHS made the concession based on the Rule 4(c) reports and the medical records.

    In order to explain how they came to their conclusion, it is only reasonable that they be able to discuss the actual records.

    The Polings offered that HHS could discuss, but not disclose. That would leave the field open to criticisms of interpretations. Working from the real information, the HHS can make the statements as clear as possible.

    I.e. they could work in a realm of “complete transparency”.

  12. MJ May 2, 2008 at 00:44 #

    “Thus MJ, me mentioning that would’ve been pointless as it doesn’t matter.”

    Since this disclosure is the entire point of the motions and ruling in question I would think that it would be very on point.

    “As to the nature of HHS release – that seems wise to me. Lets be honest. What we’re talking about here is Hannah Poling’s medical status, before, during and after her vaccinations. Thats what HHS want to release”

    No, that’s what they want to discuss. I didn’t see anywhere that the government is seeking to release the text of her medical records – just leave to discuss them. Which, according to the ruling, the family is willing to do in return for other documents also being released.

    “Sorry, but it seems very much to me that the Polings do not want clarity regarding their daughters medical records”

    No, I would think that they would not want to disclose the text of the medical records for obvious reasons. Specifically I would think there is a good deal more information of a highly personal nature that has nothing to do with the case in question.

    However, if you think that this is a reasonable request than I would suggest that you give a show of good faith and post your child’s complete medical records on the internet first.

    “When I tie this in with the opinion of Drs DiMaurio and Shoffner (Poling’s co-author on the Poling case study) that Poling is not drawing legitimate conclusions and that HHS conceded needlessly”

    Do you have a reference for these statements?

    “Why have the family still not given permission to Andrew Zimmerman to speak freely”

    Again, do you have a reference for this either (other than your blog).

    Matt you said :

    “In order to explain how they came to their conclusion, it is only reasonable that they be able to discuss the actual records.

    The Polings offered that HHS could discuss, but not disclose.”

    You are contradicting yourself. First you say that it “only reasonable that they be able to discuss the actual records” then go onto say that they only offered leave to discuss the records?

    “That was due to a unilateral disclosure of information—most likely from the Poling team.”

    Or anyone else with access to PACER.

  13. Matt May 2, 2008 at 02:12 #

    “You are contradicting yourself. First you say that it “only reasonable that they be able to discuss the actual records” then go onto say that they only offered leave to discuss the records?”

    I did not contradict myself.

    The emphasis is on the word “actual”. The HHS needs to be able to discuss “actual” records, not some interpretation.

    If HHS can only discuss the records, then others will be able to claim spin and reinterpret the records.

    However, if they can discuss the ‘actual’ records, as in “We can see here that the records say ‘xxxxxx'” there will be a lot less spin.

    Sorry if it wasn’t clear.

    As to Kev’s statements that DiMauro and Shoffner have stated that the concession was needless,

    http://www.sciam.com/article.cfm?id=vaccine-injury-case-offer

    According to DiMauro in that story:

    “This means that, scientifically, from the documents presented in the vaccine court, the Polings did not make a case that deserved compensation”

    If anyone with access to Pacer could have access to those documents, then why did the Court grant access to the petitioners at the Poling’s request?

    According to the docket, on March 5, the Polings made a

    “Motion for leave to disclose case-specific facts to the Petitioners’ Steering Committee”
    (same day as the motion ‘styled’ as a motion for complete transparancy)

    The ‘case-specific facts’ motion was granted on March 6.

  14. Matt May 2, 2008 at 02:33 #

    More on the PACER question:

    PACER does not give people unlimeted access to a docket. Try to access the expert report–go ahead. My guess is that unless you are involved directly in the case, you will get “You do not have permission to view this document. “

  15. MJ May 2, 2008 at 03:06 #

    “According to DiMauro in that story:

    “This means that, scientifically, from the documents presented in the vaccine court, the Polings did not make a case that deserved compensation””

    Actually I had a question about that quote. It implies that DiMauro has reviewed the medical records, reports, and other documents presented to the court.

    Now it is my understanding that those documents have not been released to the general public (hence the motion).

    So I have to wonder what DiMauro is basing his statement on since I don’t think he has access to the documents.

    “If anyone with access to Pacer could have access to those documents, then why did the Court grant access to the petitioners at the Poling’s request?”

    Because it wasn’t permission for the petitioners, it was granting permission to the “Petitioners’ Steering Committee” which is not a direct party in the case. So if the committee wanted to use the information from the case in say another case or to review the full records they would have to be granted access.

    “PACER does not give people unlimeted access to a docket. Try to access the expert report”

    I did not say that it granted unlimited access to the documents. From the ruling linked to in the post on page 6 :

    “access to filings with the Office of
    Special Masters is available only to parties, who have proper accounts, through the internet-based Public Access to Court Electronic Records (PACER) System”

    which I read to mean that there are parties other than the petitioners or respondents who can gain access to the records.

  16. Schwartz May 2, 2008 at 07:37 #

    MJ,

    Even better, DiMauro has already done a 180 degree turn on some of his public comments on this case in two separate articles.

    Clearly he does not have access to the details and is speaking in generalities.

  17. Schwartz May 2, 2008 at 08:09 #

    Kev,

    The Gov’t want disclosure of the Poling’s medical records and offered no disclosure in return.

    The Polings want disclosure of the Gov’t records and are offering to allow public discussion of the medical records and full disclosure of other evidence.

    They are still negotiating. Who in their right mind would give up their only negotiating position by allowing the medical records to be publically discussed without reciprocation from the government?

    But you still accuse them of hiding information? They are only holding the information until they can get a full disclosure on the whole case instead of them having to disclose only their medical records. Once the records are discussed publically by anyone, they have no further negotiating position.

    Additionally, they did not lie about the press conference. If you read the document carefully, the press conference was held two days after the petitioners filed the motion.

    “Thereafter, “[p]etitioners filed the current Motion, and two days later they held a press conference and appeared in nationally televised and print interviews discussing the case.””

    This was some unspecified time AFTER the status call. So clearly no press conference was planned or held the following day of the status call. You don’t even know what day the status call was. We only know they filed the motion on March 4 AFTER the status call and that on March 6 they held the press conferences. We also know that on February 28, 2008, they approached the Special Masters asking for permission to publically discuss the case.

    Since the respondents claim they first made attempts to get permission to discuss information in the case — The Poling’s information that is, not their own — and the respondents claim that they heard nothing from the Petitioners until the status call, unless the respondents were completely ignorant about the February 28 meeting with the OSM, then the status call likely occurred BEFORE February 28, although one can’t be certain from the writing. What one can be certain is that no press releases occured on March 5, as indicated by the petitioners in the status call some unspecified day on or before March 4.

    If you read this carefully, it is only the government that insists on not allowing public discussion of their documentation. The Poling’s have offered everything for public discussion.

    Where is the lie exactly? This is a Red Herring.

  18. Schwabingen May 2, 2008 at 08:54 #

    What does this say Schwartz?
    “Minute Entry for proceedings held before Special Master Patricia E. Campbell-Smith : A telephonic status conference was held on 3/3/08 from 4:15 until 5:30 PM. Mr. Clifford Shoemaker represented petitioners and Tom Powers assisted as co-counsel and Mr. Vincent Matanoski and Ms. Catharine Reeves represented respondent. (cc2,) (Entered: 03/03/2008)”

    This could be interpreted to mean that they had a status conference via telephone — and that it was on the 3 March 2008. Further, that there had been news reports that had been shown to the Special Masters by the afternoon of the 3rd indicating that a press conference was planned for the 6th. Since the Polings expected CNN to cover it, their public relations team probably gave CNN and the other major networks at least three day’s advance notice that there would be a press conference.

    The problem is that there is an explanation for the use of “the next day” in one quote and “two days later” in the other quote, and that explanation can’t be found in the documents we have access to to date. Have you considered contacting a court clerk who is on the side of the antivaccine parents and have that one leak the documents you want to you. Alternatvely, you could contact David Kirby. He seems to have access to details mere mortals are not privy to.

  19. Kev May 2, 2008 at 09:02 #

    Since this disclosure is the entire point of the motions and ruling in question I would think that it would be very on point.

    Then you would be wrong. I’ll say it again – the disclosure has already occurred. When ‘someone’ (ahem) leaked the documents to David Kirby, the issue of the two rule 4 reports being released was moot. Why would I (or anyone) want to talk about that?

    No, that’s what they want to discuss. I didn’t see anywhere that the government is seeking to release the text of her medical records – just leave to discuss them. Which, according to the ruling, the family is willing to do in return for other documents also being released.

    I’m afraid not.

    HHS are asking for:

    petitioners’ consent to permit the Secretary of Health and Human Services to disclose medical information regarding this case in order for the Secretary to address inaccurate statements that were being made publicly concerning respondent’s position in this case.

    Maybe they’re not asking for every single detail of Hannah Poling’s entire medical history but they certainly want medical information to correct the inaccuracies that were made publicly by (ahem) certain people.

    No, I would think that they would not want to disclose the text of the medical records for obvious reasons. Specifically I would think there is a good deal more information of a highly personal nature that has nothing to do with the case in question.

    Thats a strawman MJ. Nobody’s asking for details of Hannah Polings hypothetical tonsil removal. We all know, they all know exactly what information is needed – and the Poling’s are blocking its release.

    However, if you think that this is a reasonable request than I would suggest that you give a show of good faith and post your child’s complete medical records on the internet first.

    And thats another strawman MJ. When my daughter is at the centre of an internationally important medical/legal issue – placed there by me, my legal counsel and a reporter of my choosing – and I have in my possession records that can clear up inaccuracies I may well do so. Until then, lets concentrate on the real world eh?

    Again, do you have a reference for this either (other than your blog).

    I have an email from KK which I blogged about here. It said:

    Dr. Zimmerman…….is not able to publicly discuss this patient. As a participant in this case, the family provided consent for Dr. Zimmerman to share information with the court, but we do not have parental consent to discuss the patient publicly – as we are bound by HIPAA privacy regulations, as in any healthcare setting in the U.S.

    Now, you can elect not to believe that if you so choose. In which case I recommend you email Dr Zimmerman yourself.

  20. Schwartz May 2, 2008 at 09:11 #

    Schwabingen,

    We’ll you proven the point that there was no lie.

    If the call is indeed the one referred to on March 3, the “following day” — as the special masters QUOTED specifically from the respondent’s own paper (not “the next day” as you wrongly quoted) — is March 4.

    Very simple. They asked if reports that there was a conference planned for March 4 (the following day) were true. They told them they were not. They held a conference on March 6.

    There is no lie according to the documents. Unless you have access to other documents, you have no evidence to support the allegations of a lie.

  21. Kev May 2, 2008 at 09:14 #

    Actually I had a question about that quote. It implies that DiMauro has reviewed the medical records, reports, and other documents presented to the court. Now it is my understanding that those documents have not been released to the general public (hence the motion). So I have to wonder what DiMauro is basing his statement on since I don’t think he has access to the documents.

    It implies no such thing. DiMaurio is simply doing what I did, but with mito disorder.

    In other words, he is looking at the _medical_ data presented in the Poling/Shoffner/Zimmerman Case Study (data which presents the entirety of Hannah Poling’s medical response to her vaccinations) and making a judgement on that. (Schwartz – I’d be interested in seeing the statements he’s made that contradict the statements in the SciAm article, especially the timing of them).

  22. Schwartz May 2, 2008 at 09:18 #

    Kev,

    The supplimental Rule 4 (Feb 21) has NOT been publically disclosed. Only the document from November was.

    “Maybe they’re not asking for every single detail of Hannah Poling’s entire medical history but they certainly want medical information to correct the inaccuracies that were made publicly by (ahem) certain people.”

    The Polings have offered to allow public discussion of the medical records. That certainly appears to meet those requirements. If the records are available for both parties to publically discuss, no secrets can remain, only private information will be protected.

    “Thats a strawman MJ. Nobody’s asking for details of Hannah Polings hypothetical tonsil removal. We all know, they all know exactly what information is needed – and the Poling’s are blocking its release.”

    No, the Poling’s have offered to allow public discussion of everything the government wants in return for reciprocal disclosure of the government decision. The government refuses to release the Rule 4 reports one of which (the amended one) is not yet public.

    ONLY the government is taking a position that they want to keep their own records secret. To allow their own records to be made public (by Dr. Zimmerman) would cost them the only negotiating position they have? What legal council (or anyone negotiating) would do that?

    Your accusations of them witholding information is a red herring.

  23. Schwartz May 2, 2008 at 09:25 #

    Kev, it won’t let me post the links and quotes from DiMauro.

  24. Schwartz May 2, 2008 at 09:29 #

    Kev,

    I’ll try this without the quotes…

    In this New Scientist article on March 8:

    He states very strongly that her mtDNA point mutation is likely to have resulted in her Mito dysfunction.

    http://www.newscientist.com/channel/health/mg19726464.100-autism-payout-reignites-vaccine-controversy.html

    On April 22, DiMauro changes his tune and states that the defect is NOT likely to be the mtDNA mutation but some other unspecified (no

    evidence here at all) DNA mutation. Note, this is in line with Dr. Poling’s arguments (except the DNA mutation part). No new information was posted in between.

    http://www.sciam.com/article.cfm?id=vaccine-injury-case-offer

  25. Kev May 2, 2008 at 09:30 #

    The Gov’t want disclosure of the Poling’s medical records and offered no disclosure in return. The Polings want disclosure of the Gov’t records and are offering to allow public discussion of the medical records and full disclosure of other evidence. They are still negotiating. Who in their right mind would give up their only negotiating position by allowing the medical records to be publically discussed without reciprocation from the government?

    Uh-huh, but I don’t really care about that. I don’t see what the HHS can offer medically that can move the situation forward.

    The point of this post is to highlight the disparity between the oft-repeated stance from the Poling’s et al that they want full disclosure right now and their actions which belie their words.

    HHS do not want unfettered access to Hannah Poling’s record of her time on Earth. They want access to the records which correct inaccuracies others (ahem) have made publicly.

    Why wouldn’t they want to address incorrect information as soon as possible?

    But you still accuse them of hiding information?

    Well, yeah, because they are. Whatever the reasons are, people who claim to want full disclosure, as soon as possible should live up to that. Whatever HHS does should be irrelevant and I very strongly suspect that this is just a tactic to stall indefinitely and prevent HHS from actually correcting the inaccuracies someone (ahem) keeps making in the media.

    And the press conference? Are you really being _that_ anal?

    Then let me make your day – you are 100% correct that the press conference was held 2 days later, not the next day.

    But, retuning to the non-anal world, that matters not one jot. Its a point of honour. HHS clearly asked if a press conference was planned, Counsel said no. There was a press conference. If we want to be as anal as you seem to want to be about this 24 hours, then lets note that petitioners said:

    that the reports of a planned press conference were not true

    Not:

    that the reports of a planned press conference the next day were not true

    So yeah. When they denied a press conference was being held the next day they were literally correct. When they denied a press conference was taking place, they lied.

  26. Kev May 2, 2008 at 09:38 #

    The supplimental Rule 4 (Feb 21) has NOT been publically disclosed. Only the document from November was.

    The supplemental Rule 4 report? That concerns seizure disorder. It has nothing to do with autism.

    The Polings have offered to allow public discussion of the medical records. That certainly appears to meet those requirements. If the records are available for both parties to publically discuss, no secrets can remain, only private information will be protected.

    And how exactly can public discussion occur without the relevant section of the records? Come on Schwartz, I can’t believe you really think that’s in any way either fair or even possible.

    No, the Poling’s have offered to allow public discussion of everything the government wants in return for reciprocal disclosure of the government decision. The government refuses to release the Rule 4 reports one of which (the amended one) is not yet public.

    Once again, _I don’t care_ about that – I care about the Poling’s on one hand stating they want total disclosure as soon as possible and on the other hand witholding information that will clearly have a bearing on how certain people’s (ahem) accuracy is percieved.

    ONLY the government is taking a position that they want to keep their own records secret. To allow their own records to be made public (by Dr. Zimmerman) would cost them the only negotiating position they have? What legal council (or anyone negotiating) would do that?

    Once more – who cares? Not me. I’m so far from interested in watching legal parlour games you wouldn’t believe it. I want the Poling’s to live up to their word.

    Your accusations of them witholding information is a red herring.

    Sorry, Schwartz, its not. You freely admit yourself they are doing it. The only difference is that you see this information that has a bearing on how this case is perceived all over the world as OK to be used as a poker chip. I don’t.

    I want the Poling’s to live up to their word. You don’t change the rules when the game starts to go against you.

  27. Schwartz May 2, 2008 at 09:43 #

    “Why wouldn’t they want to address incorrect information as soon as possible?”

    Because doing so would erode the only negotiating position they have.

    “But, retuning to the non-anal world, that matters not one jot. Its a point of honour. HHS clearly asked if a press conference was planned, Counsel said no. There was a press conference. If we want to be as anal as you seem to want to be about this 24 hours, then lets note that petitioners said:”

    You don’t actually know what was stated on the conference, call, you also don’t know what words were used. You’re only reading what the respondent’s said about it. The facts are simple. There was no press conference held the following day. it was held THREE days later, not two. And the HHS had those days to review and sign the offer of full disclosure in those three days.

    “When they denied a press conference was taking place, they lied.”

    From the documents: “Petitioners’ counsel replied to respondent, and represented during a status conference in this case, that the reports of a planned press conference were not true.”

    I don’t read denial, I don’t even read stated. I read a very slippery word “represented”. You don’t actually know what was said, so your accusations of a lie are unsubstantiated by any documentation. You are adding clear language interpretation to language that was specifically vague.

  28. Kev May 2, 2008 at 09:46 #

    Here’s a quote from DiMaurio from the article you linked to Schwartz:

    DiMauro says…My guess is that if she had a mitochondrial mutation, sooner or later she would have shown something abnormal….In the girl’s case it would be important to prove protein synthesis is disrupted…

    Now, I’ve emboldened those two sections as they indicate what I suspected. At the time of the New Scientist piece, he clearly hasn’t read the Poling/Shoffner/Zimmerman case study. By the time of the SciAm piece, he clearly has. No more talk of ‘guessing’ and ‘proving’.

    So yeah, his opinion has changed 180 degrees. That’s what good scientists do when they read evidence.

  29. Schwartz May 2, 2008 at 09:46 #

    Kev,

    Since you haven’t read the Supplimental report, you don’t actually know what it contains. It could easily have amended the wording of the first document and therefore could very well be pertinent.

    No where does it state that the Government objects to the wording about the public discussion of medical records. You are the only one stating this. The government objection is that they do not want to release the two Rule 4 reports. No other objection is documented anywhere.

    No secrets will be available if the medical records can be discussed by all of the parties in public. You need a better argument than that.

  30. Kev May 2, 2008 at 09:55 #

    The facts are simple. There was no press conference held the following day. it was held THREE days later, not two

    Schwartz – if that really matters to you then good luck 🙂

    I’m reading from the same document you are. Am I to believe that because _you_ say it its true and sacrosanct?

    Come on Schwartz – you can’t have it both ways. You know full well that whilst petitioners counsel might well have stayed literally accurate they were – at best – very misleading.

  31. Schwartz May 2, 2008 at 09:55 #

    Kev,

    “So yeah, his opinion has changed 180 degrees. That’s what good scientists do when they read evidence.”

    He blown it on either count:

    If he didn’t read the details (all he had to do was listen to the press conference, where the same logic he used on April 22, was outlined by Dr. Poling) then why does he bother offering a strong opinion. THat is not the mark of a good scientist.

    Additionally, if he wasn’t familiar with the details (which didn’t change between March 8 and April 22) then how did he know about these specific genes 16 S on March 8? He even knew that the mutation was rare (remember that is what everyone zero’d in on).

    He seems to know a lot of details unlike your assertion. He’s either speaking authoritatively without knowing the details (not the mark of a good scientist) or he blew the analysis (not exactly the mark of an expert).

    You’ll need a better argument than that.

  32. Schwartz May 2, 2008 at 10:01 #

    Kev,

    I agree with misleading. There is a big difference between allegations of misleading and lying. I also think that the respondents were not negotiating in good faith asking for full disclosure without offering any of their own.

    BTW, your website continues to dislike something from the New Scientist quote starting with:

    “DiMauro says it’s significant that the girl’s …”

  33. Kev May 2, 2008 at 10:03 #

    Since you haven’t read the Supplimental report, you don’t actually know what it contains. It could easily have amended the wording of the first document and therefore could very well be pertinent.

    Absolutely true, but irrelevant (by the way, if I am to believe certain people (ahem) then yeah, the supplemental report discusses seizures. I’ll let you place your own level of importance on that). The issue for me is two-fold:

    1) The Polings et al want full disclosure, right now. So it seems clear to me – forget what games HHS want to play _and disclose_ .

    2) What the Poling’s are withholding contains information that will lead to more accuracy regarding what has already been reported.

    No where does it state that the Government objects to the wording about the public discussion of medical records. You are the only one stating this.

    Sorry, I don’t follow you.

    The government objection is that they do not want to release the two Rule 4 reports. No other objection is documented anywhere.

    *I don’t care* what HHS does or doesn’t do. If it was up to me I’d happily release the goddamn things right now. But its irrelevant to the point I’m making. If the Poling’s want full disclosure, right now, then they should disclose fully, right now.

    No secrets will be available if the medical records can be discussed by all of the parties in public. You need a better argument than that.

    Um, where did I argue they would?

  34. Ms. Clark May 2, 2008 at 10:03 #

    Shwartz: “There was no press conference held the following day. it was held THREE days later, not two. And the HHS had those days to review and sign the offer of full disclosure in those three days.”

    Are we thinking the conversation went like this?

    Campbell Smith: Is it true that you are planning a press conference for March 4 (or 5 or 6)?

    Shoemaker: No, we are not planning a press conference for that date, but we would like you to release documents by this Wednesday the fifth at 5 pm because we are planning a ummmm (long pause) picnic, yes, picnic for Thursday the 6th, and want your permission for us to share with the (muffled whispers) ummm caterers the Rule 4 report. Which of course is already available online on Huffingtonpost, (cough) we mean ummm which we would like your permission to send to the Washington Post. Yeah. So hurry up, now because we need this decision in 48 hours so we’ll have it in time for the picnic, yeah, picnic.

    What was the rush? The Polings seem to have jeopardized their own case by allowing the leak of the Rule 4 report over which leakage they seemed to be happy. What was the rush to get this thing out in the open the “concession” had taken place months prior. What was the rush? Why plan a press conference and then lie about having planned it? Why is a PR man involved?

  35. Kev May 2, 2008 at 10:06 #

    Schwartz if you want to quote something are you using blockquote elements? The comments box only allows certain elements to make sure its secure. see here for usage.

  36. Kev May 2, 2008 at 10:18 #

    If he didn’t read the details (all he had to do was listen to the press conference, where the same logic he used on April 22, was outlined by Dr. Poling) then why does he bother offering a strong opinion. THat is not the mark of a good scientist.

    Good grief Schwartz – he was interviewed for New Scientist. Offering an _opinion_ based on what he knew then.

    Additionally, if he wasn’t familiar with the details (which didn’t change between March 8 and April 22) then how did he know about these specific genes 16 S on March 8? He even knew that the mutation was rare (remember that is what everyone zero’d in on).

    Um, its in the HHS report David Kirby leaked on Feb 26th:

    Dr. Schoffner diagnosed CHILD with oxidative phosphorylation disease. Id. at 3. In February 2004, a mitochondrial DNA (“mtDNA”) point mutation analysis revealed a single nucleotide change in the 16S ribosomal RNA gene

    As far as it being rare, I’d be surprised if he didn’t know. He is after all the leading authority on mito disorder and autism.

    He seems to know a lot of details unlike your assertion.

    lol…he ‘knew’ one detail:

    DiMauro says it’s significant that the girl’s genetic mutation was in the 16S ribosomal RNA gene

    the detail that was mentioned in the HHS report.

    All this does is back up my ‘assertion’ that DiMaurio hadn’t read the Case Study when being interviewed for New Scientist. He’d just read the HHS report.

    He’s either speaking authoritatively without knowing the details (not the mark of a good scientist) or he blew the analysis (not exactly the mark of an expert).

    Riiiight. Or maybe he was speaking about what he _thought_ was available and then became aware of more data later and changed his opinion.

    You’ll need a better argument than that.

    I doubt it.

  37. Schwartz May 2, 2008 at 13:00 #

    Kev,

    So what did DiMauro learn after MArch 8 that he didn’t know before? Dr. Poling said from day 1 that Hannah and her mother shared the same defect. That is what DiMauro used in his logic to dismiss it as a cause (strangely, the same logic Dr. Poling outlined later to Dr. Novella). What new information came to light exactly?

  38. century May 2, 2008 at 13:14 #

    Kevin said
    “I have an email from KK which I blogged about here. It said: blah blah blah

    Now, you can elect not to believe that if you so choose. In which case I recommend you email Dr Zimmerman yourself.”

    Or email Elise Babbitt Welker at KK because she is the Communications Officer and is the one who will reply

    welker@kennedykrieger.org

    and she’ll tell you about Kevin’s misleading comments

  39. Kev May 2, 2008 at 14:07 #

    Will she century? What would she say exactly? Elise seems like a very nice, honest lady. We swapped friendly emails so I’m not sure what you’re getting at…?

  40. Kev May 2, 2008 at 14:13 #

    So what did DiMauro learn after MArch 8 that he didn’t know before? Dr. Poling said from day 1 that Hannah and her mother shared the same defect. That is what DiMauro used in his logic to dismiss it as a cause (strangely, the same logic Dr. Poling outlined later to Dr. Novella). What new information came to light exactly?

    You seem to be asking me to read DiMaurio’s mind Schwartz.

    What’s crystal clear is that at one point in time DiMaurio clearly had the information contained in the HHS report and passed an opinion based on that information.

    Later on, he had the information from the Case Study and passed an opinion based on that information.

    It really is very clear Schwartz.

  41. Sullivan May 2, 2008 at 18:35 #

    If the government was caught parsing phrases like is going on in defence of the Polings, there would be a lot of complaints from the public. Just an observation.

    I don’t know why anyone would struggle against the idea that the supplementary Rule 4(c) report includes the seizure disorder. Mr. Kirby noted on his blog that the seizure disorder was allowed on Feb. 22. There is no entry in the Poling Docket on Feb 22. However, this is one day after the supplemental report was submitted. Nothing else is submitted for about a month before that.

    The Poling’s “motion for complete transparancy” was an attempt to rewrite the law about what can and can not be disclosed by a petitioner. In specific, it was an attempt to define the Rule 4(c) reports as not being “information”. A very strange move, and exactly the sort that would, again, bring cries of outrage from the public if the government had tried that.

    Both Rule 4 reports have been leaked. We can quibble over whether it is in whole or in part, since Mr. Kirby only offered selected quotes (interspersed with his own words, as noted by Kev in a previous post).

    I don’t know why anyone would argue against the idea that the second Rule 4(c) report is “public”. Either Mr Kibry has it in it’s entirety, or he was only given selected parts. Arguing that only bits were given to him is to admit that the people who leaked it are clearly trying to manipulate the public image of the second report. Why not go with the version of the story that makes them look better: that the entire report was given to Mr. Kirby?

    It appears that legally, both reports are released. The Special Master stated that the request to make the reports public is moot. She did not say, “the first one is public, so that is moot”. Whoever gave the second report (in whole or part) to Mr. Kirby already broke the confidentiality of that document. Mr. Kirby, as a non party, is a part of the “public”. The fact that they only gave the report to a small part of the public is, again, not something that speaks well to whoever made the leak.

  42. Sullivan May 2, 2008 at 19:53 #

    A lot of things have happened recently that could have affected Dr. DiMauro’s comments.

    Probably the biggest is the American Academy of Neurology meeting. This is the one where Dr. Shoffner presented his preliminary results.

    It would seem a good assumption that Dr. DiMauro not only attended that talk, but spoke in person with Dr. Shoffner about the characteristics of the children he has been treating.

    I would further take as a good assumption that the HHS did not consult with Dr. DiMauro before making the concession. (an assumption that appears implicit in the comments above). However, HHS is allowed to call in its own experts. I would consider it likely that Dr. DiMauro or some other mitochondrial expert(s) will be approached to consult on this issue in the future. In fact, I think anyone who is thinking this through would suggest that it is the proper thing to do.

    That said, one has to imagine that it will be more difficult for others to make the mitochondrial autism argument hold in vaccine court in the future. Not to say that it won’t happen, or that it was incorrect in the case of Ms. Poling. But, I think it will be contested.

    Poling v. HHS has not created a “table” injury for mitochondrial disorders and vaccine injury. It looks like there will be considerable argument before such an event might occur.

  43. MJ May 3, 2008 at 01:41 #

    “Then you would be wrong. I’ll say it again – the disclosure has already occurred”

    Please provide a link the the amended rule 4 c report then.

    “Thats a strawman MJ. Nobody’s asking for details of Hannah Polings hypothetical tonsil removal.”

    How the privacy of your health records a strawman? If there were only to provide a limited portion of the records, ones that dealt only with the exact incident you would still accuse them of withhold information.

    “And thats another strawman MJ. When my daughter is at the centre of an internationally important medical/legal issue – placed there by me, my legal counsel and a reporter of my choosing – and I have in my possession records that can clear up inaccuracies I may well do so.”

    I would assume that if your daughter were in the center of an internationally important event then you would do your best to avoid the inaccuracies in the first place. I think your predisposition to assuming that the reports are inaccurate is in fact a straw man.

    “I have an email from KK which I blogged about here. It said:”

    Actually, quoting from your blog post you said :

    “The fact of the matter is that the Gvmt has no rights to stop the family talking about the case.”

    Which, as the current ruling shows is clearly not the case. But again, I said something that isn’t posted on your blog.

    “It implies no such thing. DiMaurio is simply doing what I did, but with mito disorder.”

    Lets examine the exact quote, shall we?

    “This means that, scientifically, from the documents presented in the vaccine court, the Polings did not make a case that deserved compensation”

    Now, I am not a expert in the English language but I assume the phrase “from the documents presented in the vaccine court” is meant to 1) refer to the documents in the vaccine court and 2) imply that is those documents that are being used to support the statement.

  44. Sullivan May 3, 2008 at 05:39 #

    Please provide a link the the amended rule 4 c report then

    You can read heavily edited excerpts at the Atlanta Constitution Journal website. Mr Kirby has it, and he is a part of the public. He certainly is not a party to this action, and, as such, giving him the information was a violation of the rules of the court. The confidentiality of the report has been breached.

    Which, as the current ruling shows is clearly not the case. But again, I said something that isn’t posted on your blog.

    I guess we are talking about different cases. First, the current document is not a ruling on whether the Poling’s can discuss their information. Much the contrary, the current ruling states that the Polings have the say as to whether they discuss their child’s history and make public the expert reports submitted.

    The case clearly is that the Polings can discuss the information about their child. They can not discuss the HHS response to their case…oops, except that they have.

    The HHS can not discuss the specifics of Ms. Poling’s case.

    Perhaps the HHS can submit a document where they explain everything that went into their decision. Clearly quoting from the expert reports (in total) and Ms. Poling’s medical history as it relates to the case (in total). Then, that being information that HHS submitted to the Court, HHS would be free to release it to the public?!?

  45. Schwartz May 3, 2008 at 06:05 #

    Kev,

    “What’s crystal clear is that at one point in time DiMaurio clearly had the information contained in the HHS report and passed an opinion based on that information.”

    He had a lot more information than that. He had information on the specifics of the gene containing the defect, and he also knew both the mother and the daughter had exactly the same defect. Both of these two facts are what he used in his reversal of reasoning on April 22. Dr. Poling pointed out EXACTLY the same things in the first press conference on CNN (March 6 as we all know — two days before DiMauro’s first commentary). Dr. Poling made the same logical argument that Dr. DiMauro used on April 22 to rule out the mtDNA defect as likely cause or contributer.

    (Even more ironic is that many people argued that Dr. Poling’s logic on this topic was flawed and biased — just because the mother wasn’t sick doesn’t mean the daughter didn’t suffer from the defect. Yet, DiMauro makes the same argument a month later, and everyone remains silent.)

    Trying to argue that DiMauro didn’t have the information (since the genetic details were not even discussed in the case study) it looks much more likely that DiMauro shot off an answer trying to implicate the genetics and then changed his story after Dr. Poling wrote his rebuttal down on the web for everyone to see how DiMauro and Novella were spinning the story. After that embarrassment, Novella responds that the information is interesting, and DiMauro changes his story, agrees with Dr. Poling, and then proceeds to pontificate that there must be another genetic problem, despite any actual evidence to support this.

    You do realize the DiMauro’s opinion on April 22, has basically nullified any mtDNA genetic association with her disorder. That means there is no remaining evidence that she had any genetic disorder at all.

    Sullivan,

    Dr. Shoffner may have talked about his study, but that had nothing to do with the genetic details of Hannah Poling’s case which is what DiMauro was specifically talking about. The information he was using to justify his logic on April 22, was all known from the date of the first press conference.

    I fully agree that the likelihood of future claims being contested is highly probable.

  46. Kev May 3, 2008 at 08:03 #

    <blockquote.He had a lot more information than that. He had information on the specifics of the gene containing the defect, and he also knew both the mother and the daughter had exactly the same defect. Both of these two facts are what he used in his reversal of reasoning on April 22

    Schwartz, I cannot for the life of me understand what you find so very difficult about this.

    Based on the issue _you_ raised and the sources _you_ quoted, everything that DiMaurio said in the New Scientist piece is not only explainable but entirely logical.

    What he read between then and the SciAm piece is anybody’s guess but I’m pretty sure it included the Case Report.

    You seem to to be desperately trying to obfuscate a whole series of events – take your bewilderment that DiMaurio knew about the 16S ribosomal RNA gene info when it was discussed openly before the end of Feb.

  47. Kev May 3, 2008 at 08:14 #

    Please provide a link the the amended rule 4 c report then.

    Please see Sullivan’s answer above.

    If there were only to provide a limited portion of the records, ones that dealt only with the exact incident you would still accuse them of withhold information.

    Hey, look at that – you can read minds too!

    Actually, no I wouldn’t.

    I would assume that if your daughter were in the center of an internationally important event then you would do your best to avoid the inaccuracies in the first place. I think your predisposition to assuming that the reports are inaccurate is in fact a straw man.

    I think that first of all you need to look up the meaning of a strawman. Secondly, no, it isn’t. The issue of accuracy is what led HHS to make this motion in the first place.

    respondent who first approached and asked for petitioners’ consent to permit the Secretary of Health and Human Services to disclose medical information regarding this case* in order for the Secretary to address inaccurate statements that were being made publicly concerning respondent’s position in this case.

    However, you are very, very correct when you say I would do my best to avoid inaccuracies in the first place. That would involve ensuring that any representation avoided lies and y’know, inaccuracies in the media.

    Which, as the current ruling shows is clearly not the case.

    Huh? Are you suggesting that the Poling’s are currently not talking about the case? Are you suggesting that Jon Poling et al has not confirmed that the case Study is about his daughter? This motion is about HHS trying to get permission from the Poling’s to talk about their daughter in order to correct inaccuracies.

    But again, I said something that isn’t posted on your blog.

    Then, again, I suggest you email KKI direct.

    Now, I am not a expert in the English language but I assume the phrase “from the documents presented in the vaccine court” is meant to 1) refer to the documents in the vaccine court and 2) imply that is those documents that are being used to support the statement.

    ?????

  48. Kev May 3, 2008 at 08:21 #

    Dr. Shoffner may have talked about his study, but that had nothing to do with the genetic details of Hannah Poling’s case…

    Schwartz, you do realise that the Poling case study was co-authored by Shoffner, right?

  49. Schwartz May 3, 2008 at 18:17 #

    Kev,

    Yes, and I also realize he can’t dicuss patient details without permission.

    Like I said, DiMauro was quite clear in both articles what his reasoning was based on. In both cases all of the information contained in his reasoning was available from day 1. The only change was his “expert” opinion, not surprisingly after his first opinion was exposed as flawed.

    It seems pretty clear that scientific credentials aside, DiMauro is acting in the capacity of both politics and science, and clearly the former is affecting his quoted opinions.

    Sullivan pointed out the conference likely discussed a preview of his study (given the timing that makes a lot of sense), not Hannah Poling’s unpublished genetic details.

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