Excerpts from Congressman Smith's Statements
Lyme Disease Bill
Washington, Sep 27, 2008 -
Mr. Smith of New Jersey.
Let me just say, to clarify the record, this legislation, which would seek to lay bare the science about Lyme disease, the fact that I believe we do have an epidemic, the fact that Lyme often go misdiagnosed, underdiagnosed. It is called “the great pretender” because so many people have it and don’t know it. It often masquerades as other kinds of anomalies manifesting in a person’s body. And it is 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 has been, unfortunately, a significant, I believe, cover up of the fact that chronic Lyme exists. The gentleman knows, 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—who runs a Lyme disease association, that this would get a hearing and would be marked up. It has not been marked up. And meanwhile, this epidemic is growing—it is exploding.
Now, let me just say for the enlightenment of my colleagues; the Infectious
Disease 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. 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 the Lyme panel.
I would note parenthetically that CHRIS DODD is the prime sponsor of the comparison legislation that I’ve introduced on the House side. We have worked cooperatively on the legislation, so we have a companion bill on the Senate side. The legislation has over 110—I think it’s 112—cosponsors, totally bipartisan, Democrats and Republicans alike rallying around this legislation.
The problem with the Infectious Disease Society of America is that these conflicts of interest, we believe, resulted in 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 flag 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 would take a good, long look at Lyme disease and determine what is fact and fiction, and finally, for the sake of all of 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 Disease Society of America. And I find that appalling. Conflict of interest with insurance companies has no place in modern medicine. And regrettably, and it has 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 coverage, to get the medicines and the like, like antibiotics—because what has happened, as my friend knows, because of this exclusion of chronic Lyme due to a problem in definition, the insurance companies say we don’t have to pay. So when a patient presents with a bill of $100,000 or some excessive amount of money, the insurance companies say, not us, tough luck, we’re not going to pay for it. And they go right back to 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 insurance companies.
Finally, the legislation would authorize $100 million over 5 years, $20 million each year. Frankly, if that drops off due to opposition to new authorization, and is only an authorization, I would like to see it go forward nevertheless, know this however, we’re not spending enough on Lyme.
And Lyme is, as Mr. WOLF said so aptly, growing exponentially. CDC admits we are missing most of the cases. As many as 90 percent of the cases go unreported. Our state, Mr. PALLONE, as you know, is number three in prevalence according to CDC numbers, and even that is probably very much understated in terms of the actual 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. DINGELL, as I have made to Mr. BARTON and everyone else, this legislation ought to be on this floor and 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.
I have known dozens of people who have had chronic Lyme. Now, you might say it doesn’t exist, the Infectious Disease Society says it doesn’t exist. These victims suffer from the spirochete, and 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 House. 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 U.S. 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 said was riddled with conflict of interest—and I urge Members to read Blumenthal’s opinion, I will put it in the RECORD so Members can read it—his findings were, ‘‘atrocious, conflict of interest everywhere.’’
This legislation ought to be on the floor and it ought to be on the floor today.
Mr. Speaker, again, I didn’t get a chance when Mr. PALLONE was here to correct the Record. I—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 and Disease Caucus, ‘‘we are writing to respectfully request that you mark up and report H.R. 741.
“H.R. 741, the ‘Lyme and Tick-borne Disease Prevention, Education and Research Act of 2007’ would work toward goals for the prevention, accurate diagnosis, and effective treatment of Lyme disease.”
Then we went on to explain the bill. We pointed out that at the time we had 77 cosponsors. That is now 112 and it is totally bipartisan and includes majority leader STENY HOYER. We also pointed out that Lyme is the most prevalent vector-borne disease in the United States today. More than 220,000 Americans develop Lyme each year. According to the CDC, only 10 percent of the cases that meet its surveillance criteria are 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 affect every system in the body, including the central nervous system and cardiac system. 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.
So we sent that back in May 18, 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 the statement of Attorney General Richard Blumenthal, the attorney general of Connecticut. And this is his statement.
“Attorney General Richard Blumenthal today announced,” and this is May 1, 2008, “that his antitrust investigation has uncovered serious flaws in the Infectious Disease Society of America’s process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.”
“The IDSA guidelines have sweeping,” this is Blumenthal speaking, “have sweeping and 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 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 nonexistent.”
Blumenthal goes on to say: “This agreement vindicates my investigation finding undisclosed financial interests and forcing a reassessment of IDSA’s guidelines.”
Blumenthal said: “My office uncovered undisclosed financial interests held by several,” several, “of the most powerful IDSA panelists. The IDSA’s 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 procedural safeguards requiring complete reevaluation of its 06 Lyme disease guideline, in effect a comprehensive reassessment through a new panel.”
Blumenthal, and I will put this in the RECORD, talks about the conflicts of interest with the insurance companies. Again, I would think this Congress would want to get to the science, find out does chronic Lyme exists, and whether or not this is indeed a coverup.