Congressional Brouhaha over Lyme

On September 27, things got a little testy in the House of Representatives. Frank Wolf (R-VA) had just attended a lunch presentation 3 days before on Lyme disease, hosted by the National Capital Lyme and Tick-Borne Disease Association. He saw Frank Pallone (D-NJ) on the floor presenting bills that could be passed quickly by consensus, and decided to confront him on the Lyme bill, HR741. The exchange soom involved Chris Smith (R-NJ), the author of the bill.

A transcript of the exchange is below in its entirety. To see the video of the exchange, see
the archives at C-Span or http://www.lymerights.org/Pallone_v3.wmv

Speaking:

Rep. Frank Wolf, R-Virginia, 10th District
Rep. Frank Pallone, D-New Jersey, 6th District, Head of the Health Subcommittee of the Energy and Commerce Committee
Rep. Chris Smith, R-New Jersey, author of HR741
Speaker of the House
Rep. John Sullivan, R-Oklahoma, 1st District

[NOTE: I have removed from the transcript things such as stammers, interruptions, or procedural moments. They are removed for the sake of clarity, even while knowing that that such things yield clues to meaning and intent (as do body language and voice inflection). I would refer the reader to a video of the proceedings for further clarity.]


Speaker of the House: Gentleman from Virginia is recognized.

Rep. Wolf: Thank you, gentlemen, and ask for unanimous consent, that I can revise and extend. I was watching this meeting and resolution in my office today, and I support it, I think it’s a good issue. But I want to say to the gentleman from New Jersey: I don’t understand why you’ve boxed up for months and years the bill that Congressman Chris Smith had that deals with Lyme disease. Now, I was at a national Lyme disease conference this week. Lyme disease is spreading through our nation. Lyme disease is spreading through my congressional district. Lyme disease is spreading through New Jersey -- it’s spreading through the gentleman’s district, spreading through Mr. Smith’s district. And if I could get the gentleman’s attention rather than whispering back and forth, I would like to know, I would like to know if we are going to do resolutions like this and take them out of the committee, why Mr. Smith’s bill, which has been pending in your committee for a long time, cannot be considered. If you watched the movie the other day, the number of people that have been impacted by Lyme disease is very serious. This is spreading -- it’s in Pennsylvania, I would tell the person that is chairing the House. It is spreading throughout the United States, and yet the bill is boxed up, locked up, in your committee, and I want to know, because I’ve had enough of seeing this thing go time after time after time, and you’re keeping the bill from coming out, so if I can yield to the gentleman, tell me: what do you plan on doing about Lyme disease? Why won’t you get that bill out? What is the status of it, and what would we tell somebody who happens to have Lyme disease today to know that the bill is pending in the committee? I yield to the gentleman.

Rep. Pallone: Well, as I’ve discussed with the gentleman, ‘cause we have actually talked about this, on several occasions, I believe. We are now doing what we call consent bills, in other words, bills that have the consent, meaning are basically agreed to, not only by the Democrats and Republicans, but also by the members of the subcommittee and the members of the House in general, because as you know you have to have a two-thirds vote to pass these bills or do them by unanimous consent. We do not have anything near consensus on that legislation. It would have to go through regular order, have a hearing, go through subcommittee. The problem is that, many (probably the majority but I won’t venture to say, you know, whether it’s the majority or minority, but many people) do not agree with the protocol, if you will, that is suggested if not mandated by that legislation. In other words, right now, you know the majority of the doctors treat Lyme disease, you know, in a certain fashion. Those who advocate for that legislation suggest a different protocol; and frankly I have tried very hard, as chairman of the House subcommittee not to mandate or make decisions for physicians as to what kind of protocols they use, in this case the protocol is very different from the overwhelming majority of the doctors, and so it’s a very controversial issue that needs to have a lot of debate, so there’s absolutely no way that we could do something like that on a consent calendar, because many of the members simply don’t support it.

Rep. Wolf: Reclaiming my time, then why hasn’t the gentleman had hearings on it?

Rep. Pallone: Well, we can certainly have hearings on it, and as I’ve discussed with the gentleman I would like to have hearings, not only on that bill but on the issue of Lyme disease research and treatment and we will certainly do that in the next session. But we’re obviously not doing this today, in the context of the consent calendar.

Rep. Wolf: Well, reclaiming my time, I will take you at your word that you are going to have hearings. Is that accurate, early in the year?

Rep. Pallone: What I said is that I would like to have hearings on the issue related to Lyme. We can certainly take up the issues that are raised in that legislation in the context of that. But as I would say to the gentleman again, the protocol in that legislation is very controversial. It’s certainly one of the many things that we would have to consider in the context of research and treatment of Lyme disease.

Rep. Wolf: Reclaiming my time, we’re not going to let this issue go away, I want to tell the gentleman from New Jersey, even if I have to come up into New Jersey and go throughout the state, if this bill is being boxed up. Just so members know: incidents of Lyme disease are rapidly rising in Virginia, in my Congressional district, but across the country. According to the Centers for Disease Control and Prevention, from 1993 to 2007, reported cases of Lyme in Virginia have risen 909%, and this committee has done nothing. In the same time frame, reported cases are up 235% nationwide. Lyme disease is frightening. Picture boy scouts and girl scouts camping during summer months; or children playing in their back yard; or joggers on bike paths through tree-lined neighborhoods, sharing the outdoors with a minute insect that can bring monumental health problems. The Congress needs to get serious, so I just want to say I was watching this, and I think you have boxed it up. (You know, when the gentleman was speaking I listened to him, and if you would look at me I would just appreciate it.) I want to tell the gentleman that we’re going to hold you to this with regard to hearings. I will come and testify. But if this issue is boxed up next year, we’re going to deal with it in many ways. I would ask for unanimous…if you’re going to say something, I’ll wait.

Rep. Pallone: Well, I would just say this, you know, it does bother me, because the gentleman is sort of suggesting that you and I haven’t had conversations about this. We’ve actually had many conversations about this. I told you the same thing I’ve just said here on the floor, and I really don’t understand why the gentleman is giving the impression that somehow we haven’t discussed this because we have.

Rep. Wolf: Reclaiming my time, I never said. We’ve discussed it twice. What I’m saying is, that you’ve boxed the bill up, you’ve boxed Chris Smith’s bill up, there have been no hearings, and there are a lot of people around the country that are suffering with Lyme disease, and you appear to be the roadblock, and so what we’re asking for is hearings next year…

Rep. Pallone: Would the gentleman yield?

Rep. Wolf: …give us an opportunity for people of all sides to be heard.

Rep. Pallone: Would the gentleman yield?

Rep. Wolf: I yield.

Rep. Pallone: First of all, I resent the fact that the gentleman has suggested that we’ve been boxing this up. I would point out to the gentleman that the problem of Lyme disease has been around for many years, and the gentleman and his committee, the Appropriations Committee, were in the majority for what, at least twelve years before the last two years of the Democrats have been in the majority. Certainly the gentleman had plenty of opportunity, and still does, to do something about this himself.

Rep. Wolf: Reclaiming my time, I was going to offer the Chris Smith amendment to the Appropriations bill. The Appropriations bill hasn’t met and had the hearings for months. Your side has prohibited any amendments being offered. But I will tell the gentleman, next year, if you don’t move this bill, I am going to offer it to the Labor H bill next year and we will have to deal with it on the floor.

Speaker of the House: Gentleman from New Jersey yields back his time. Gentleman from Oklahoma reserves his time. Chair recognizes the gentleman from New Jersey.

Rep. Pallone: I would just point out that, on this and so many other issues, it is amazing to me that the gentleman who was in the majority for so many years and had so many opportunities to raise this and other issues is somehow now suggesting that the Democrats are boxing it up. You know, Lyme has been around for a long time, the people who are concerned about this issue have been trying to address it for a long time. The bottom line is the gentleman knows that this is a very controversial issue. We’ll certainly raise it. But he had ample opportunity over the many years that he was in the majority to raise it and it just didn’t happen. I yield back the balance of my time.

Rep. Wolf: Would the gentleman yield back to me another minute?

Speaker of the House: New Jersey wants to yield back his time or reserve his time?

Rep. Pallone: I reserve my time.

Speaker of the House: Gentleman reserves his time. Gentleman from Oklahoma has 8 ½ minutes remaining.

Rep. Johnson: Okay Mr. Speaker, I’d like to give Mr. Wolf some more time.

Rep. Wolf: Thank you. This is a growing issue. It is becoming a more important issue and a new issue. If you look at the statistics, it is growing around the nation. It has now become an epidemic, and so when I now see an epidemic taking place in my Congressional district, in your Congressional district, through New Jersey, through Connecticut (if you talk to Senator Dodd, he will tell you), through Connecticut, through Massachusetts, all up and down the east coast, it is time to deal something. And so I think it is time to deal with. And I see the gentleman from New Jersey here. You have blocked this bill for a long period of time, and I will tell you I will not permit you to block it, and next year I will offer amendment after amendment after amendment and do whatever I can to make sure, to make sure the people that are impacted by this, to make sure the people who do not even know what may very well be threatening them will not be threatened. And I urge my gentleman, the gentleman from New Jersey, I yield to him, to also make some comments about this.

Rep. Smith: Mr. Speaker, first of all, I want to thank Mr. Wolf for raising this. I didn’t know he was going to be doing this…

Rep. Wolf: I didn’t know I would be doing it, until I saw the gentleman, Mr. Pallone, standing up and taking himself under suspension.

Rep. Smith: …so I appreciate the gentleman yielding. Let me just say, to clarify the record, this legislation, which would seek to get and lay bare the science about Lyme disease, the fact that, I believe, we do have an epidemic. The fact that it often goes misdiagnosed, under-diagnosed. It is called the “great pretender.” There’s so many people have it and don’t know it, that often masquerades as other different kinds of anomalies manifesting in a person’s body, and it’s not until it gets to a chronic state, very often causing severe disability, including neurological damage, that people finally realize that they have Lyme disease. There’s been, unfortunately, a significant (and I believe it’s a) cover-up of the fact that chronic Lyme exists. The gentleman knows that we have asked him repeatedly – the gentleman from New Jersey, my good friend, Mr. Pallone. This legislation has been pending in his subcommittee. He told Pat Smith (no relation to me)…

Rep. Pallone: Will you yield?

Rep. Smith: …(let me finish), who runs a Lyme disease organization, that this would get a hearing and would be marked up. It has not been marked up, and meanwhile, this epidemic is growing. Now let me just say for the enlightenment of my colleagues: the Infectious Diseases Society of America, which creates (and often does a very laudable job) the definitions, the parameters of what constitutes a certain disease, has looked at Lyme and said that chronic Lyme does not exist. Unfortunately, many of us have raised serious concerns about that, because of what we believe to be conflicts of interest on the part of the panel members that made up of that panel. Chris Dodd is the prime sponsor of the legislation that I’ve introduced on the House side, we work cooperatively on the legislation, so we have a companion bill on the Senate side. The legislation has over 110 (I think it’s 112) co-sponsors, totally bi-partisan, Democrats and Republicans alike, rallying around this legislation. The problem with the Infectious Diseases Society of America is that these conflicts of interest, we believe, have crowded out or caused them to come to the conclusion that chronic Lyme doesn’t exist. We don’t know absolutely if that’s the truth, but Attorney General Richard Blumenthal from Connecticut finally took a look at this and came back with a scathing, insightful report, that there were conflicts of interest. The red flags should go up everywhere. What does my legislation do? As Mr. Pallone knows, the legislation does not prescribe a protocol, as he has suggested. It simply calls for an advisory committee that will take a good long look at Lyme disease, and determine what is fact and fiction, and finally, for the sake of all those who are suffering immensely from this disease, and their families, say what we need to be doing to mitigate and hopefully stop the spread of Lyme. Whether it be long term and very heavy antibiotic treatment, which I believe probably is the case (based on clinical practitioners who have suggested that to be the case). But we want an honest look! As Mr. Pallone knows, we did not get an honest look from the Infectious Diseases Society of America, and I find that appalling. Conflicts of interest with the insurance companies has no place in modern medicine, and regrettably, and it’s been, again, the full weight of the attorney general’s report clearly suggests (Richard Blumenthal of Connecticut) that there were significant conflicts of interest on the part of the panel members. Our legislation says, let’s go where the science takes us. If the science says chronic Lyme exists, then all those patients and the insurance companies which need to be providing the wherewithal to get the coverage, to get the intervening medicines and the like, like the antibiotics, because what has happened, as my friend knows, because of this exclusion of chronic Lyme as a problem in the definition, the insurance companies say, “We don’t have to pay.” So when a patient presents with a bill of a hundred thousand dollars or some excessive amount of money, the insurance companies say, “Not us, we’re not gonna pay for it.” And they go right back to the – what I believe to be – a false definition that precludes chronic Lyme as a condition. Now, you might think that chronic Lyme doesn’t exist, I say to my friend, the chairman. But let’s go where the science takes us. We need this advisory committee, and we need it now. All points of view, as our legislation clearly suggests, has to be a part of this group. We want a robust debate! Not something that is engineered by the insurance companies. Finally, the legislation would authorize $100M over five years, $20M each year. Frankly, if that drops off, it’s only an authorization – I’d like to see it go forward, we’re not spending enough on Lyme. And it is, as Mr. Wolf said so aptly, it is growing exponentially. CDC admits we’re missing most of the cases on Lyme, maybe as many as 90% of the cases go unreported. Our state, Mr. Pallone, as you know, is number 3, according to CDC numbers, and they are probably very much understated in terms of the prevalence of Lyme disease. So I would make the appeal again, as I have made to my friend from New Jersey, as I have made to Mr. Dingle, as I have made to Mr. Barton, and everyone else, this legislation ought to be on this floor, it ought to be on the floor today. It is truly bipartisan! There ought to be a consensus to go where the science takes us. And again: an advisory committee, a blue-ribbon panel, that would be configured under this legislation, would finally end, hopefully, this contentious debate, and tell us what it is and what it is not. And let me also say, too, I have known dozens of people who have had chronic Lyme. Now, you might say it doesn’t exist, Infectious Diseases Society says it doesn’t exist. They’ve got the spirochete. They have been ruled in, in terms of having this very, very dangerous disease, and they have suffered neurological damage, severe joint damage, and many, many other problems. There is a new book called Cure Unknown, that I would recommend to the body. I read it in one sitting, because it is so incisive in finally breaking through the fog on this disease. People are walking around with Lyme and they don’t even know it. We need to bring the forces to bear of the US government, that an advisory committee of this kind would do – a blue-ribbon panel – a 9/11-type panel, of scientists, of the best people we can put together, to say, “Put aside the egregiously flawed Infectious Diseases Society of America’s finding, which Blumenthal (and I urge members to read Blumenthal’s – and I’ll put it into the record, so members can read it) his findings, were atrocious! Conflicts of interest, everywhere! This legislation ought to be on the floor; it ought to be on the floor today.

Speaker of the House: All time from the gentleman from Oklahoma has expired. The gentleman from New Jersey has 16 minutes remaining.

Rep. Pallone: Thank you, Mr. Speaker, and I yield myself such time as I may consume. First of all, I want to say to the gentleman from New Jersey: he’s made a lot of statements about my views on this subject which are simply not true and I do not appreciate them. I have no intention of yielding to the gentleman because of the disrespect that he has shown. Now secondly, let me also say this: I do appreciate the fact that the gentleman from Virginia, Mr. Wolf, has on several occasions come up to me in the last few months and talked to me about this legislation, and we’ve had very reasoned conversations about the legislation. But I will also point out that the gentleman from New Jersey has not. The gentleman from New Jersey has not spoken to me at all about this legislation, and certainly not, in my recollection, in the last year. So if you thought it was so important, the way the gentleman from Virginia did, and has, he certainly had many opportunities to come up to me and talk to me about it. He has not. And I see the gentleman from New Jersey all the time, on the floor, at home, on various occasions. He has not spoken to me. So I want to thank the gentleman from Virginia for at least saying that he has taken the time, had some reasoned discussions about it. That is not true of my colleague from New Jersey, which is why I deeply resent the fact that he is on the floor here today talking about it, ‘cause it’s the first time I ever recollect him talking to me about it. Now, let me say a few other things. First of all, as far as the science is concerned, the science is in the Infectious Diseases Society and the CDC, not with the Attorney General and some political grandstanding that he’s doing in Connecticut, nor with my colleague from New Jersey who’s grandstanding here today. I am very concerned about Lyme disease. I’ve been working with the CDC to address the issue. We’re awaiting answers from the agency on how best to address this. I have in fact talked to many of my constituents about this, even though my own colleague hasn’t talked to me about it from New Jersey. And I would also like to say this: as far as the Infectious Diseases Association, they basically are the majority opinion. Many doctors, including my neighbors who are physicians in my home town, very much agree with the Infectious Diseases Society and don’t think that this should be treated with these antibiotics for a long period of time because they’re concerned about the impact on people about whether they would be seriously injured or even die from the antibiotics. There is a lot of controversy that involves this issue. It’s very involved, and it’s very controversial. It shouldn’t be considered today on a consent calendar. And that was the only point I was trying to make to my colleague from Virginia: that we need to have hearings. And we will have hearings on the issue in general, and we can include this bill as part of that in the next session. But to bring this up today on the consent calendar when they know very well that there’s not agreement on this and we couldn’t possibly get a UC, or have this on the suspension calendar -- it’s really very upsetting, and particularly coming from my colleague from New Jersey, who has never talked to me about this at all. And with that, Mr. Speaker, I yield back the balance of my time.

[End 1:44 pm Eastern]

[1:57 Eastern]

Rep. Sullivan: I yield such time to the speaker from New Jersey, to address another concern.

Rep. Smith: Thank you. I do rise in strong support of House 906, the Mercury Market Minimization Act of 2007, Mr. Speaker. I just, again, I didn’t get a chance when Mr. Pallone was here, to correct the record. We did contact Congressman Frank Pallone and Nathan Deal by way of letter, on May 18, 2007, and wrote at the time, “As co-chairs of the Congressional Lyme Disease Caucus we are writing to respectfully request that you mark up and report HR741. HR741, the Lyme Disease, Tick-borne Disease Prevention, Education, and Research Act of ‘07 would work toward the goals of prevention, accurate diagnosis and effective treatment of Lyme,” then we went on to explain the bill. We pointed out that, at the time, we had 77 co-sponsors – that’s now over 112, and it is totally bipartisan. We also pointed out, significantly, that Lyme is the most prevalent vector-borne disease in the United States today. More than 220,000 Americans develop Lyme each year, and that’s according to CDC that’s only 10% of the cases that meet its surveillance criteria. Our reported cases that fall outside of the surveillance criteria are not even considered anywhere statistically. If not diagnosed and treated early, Lyme disease can lead to chronic illness, and can effect every system in the body, including the central nervous system and cardiac systems. Later symptoms of Lyme disease include arthritis, neurological problems such as facial paralysis, memory problems, extreme weaknesses of the extremities, seizures, heart block and inflammation, and even blindness. And on the second point – so we sent that back in May 18th, 2007, and I say that with respect to my colleague. Let me also point out, and I just will read a very small portion of Attorney General Richard Blumenthal, the Attorney General of Connecticut. This is his statement: “Attorney General Blumenthal today announced ( and this is May 1st, 2008) that his anti-trust investigation has uncovered serious flaws in the Infectious Diseases Society of America’s process in writing its 2006 Lyme disease guidelines, and the IDSA has agreed to reassess them with the assistance of an outside arbiter. (And that has gone very, very slow.) The IDSA guidelines have sweeping (this is Blumenthal speaking) have sweeping, significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care, and are also strongly influence treatment decisions by physicians. Insurance companies have denied coverage for long-term antibiotic treatment, relying on those guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is non-existent.” Blumenthal goes on to say, “This agreement vindicates my investigation, finding undisclosed financial interests, and forcing a reassessment of IDSA’s guidelines.” Blumenthal said, and I quote, “My office uncovered undisclosed financial interests held by several (several) of the most powerful IDSA panelists. The IDSA guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science. The IDSA’s Lyme disease guideline process lacked important safeguards, requiring complete re-evaluation of its ’06 Lyme disease guidelines; in effect, a comprehensive reassessment through a new panel.” Blumenthal, and I will put this in the record, talks about conflicts of interest with the insurance companies, and again, I would think this Congress would want to get to the science. Find out does chronic Lyme exist, and whether or not this cover-up is indeed a cover-up. Yield back and I thank my friend for yielding.

[End]