Gregg P. Skall, J.D. Counsel, National Capital Lyme and Tick-borne Disease Association Member, Womble Carlyle Sandridge & Rice, PLLC
Webcast here about 28 mins in.
A phonetic translation so apologise for mistakes.
Thank you. For sake of brevete and shorthand we will use the term Lyme,to designate all of the diseases we have been talking about and indeed that's important that we do that.
Because we are talking about all of these diseases. About, lets see,
about two years ago, Lyme started working the hill to try to get a full investigative hearing on chronic Lyme Disease.
We never got that hearing,but we did get the ear of congressman
Frank wolf and through his efforts and appropriations committee, I believe,that effort was, at least in part responsible for getting this very,very wonderful workshop together and we are grateful to the committee for putting together a very, very useful and wonderful workshop.
We are and grateful to the congressman for his efforts in making sure that we got this. In fact, you did it almost, the way we would have liked to have seen it done. And you covered a lot of very,very important topics, and we are very interested and they are interesting.
Most important is the fact that Lyme is identified as a national epidemic.
To many of you that may seem like second nature but frankly we have been fighting that battle for a long time.
And we need that recognition. We are only beginning to acknowledge the degree of the complexity of this diseases we are talking about.
And it is crucial that congress, that you,the medical community recognize the complexity of this disease, and the burden it creates on individuals.
From several presentations we were encouraged about the recognition of persistent or chronic Lyme Disease.
Whatever you want to call it. We need more recognition for that.
Most of the presentations really, when you analyze them dealt with acute infection.
We need, and the patients that asked for this proceeding, need
attention to the chronic form or the persistent form of the disease.
To put it a little smart alikey, science of mice is interesting, but while we are studying that we have to know, we have to know that we are still interested in the patient.
We have to keep the focus on the patient.
We were wondering where other studies of the primates? We know there are studies of primates, with respect to this infection.
We would like to see that study and discussed.
In the meantime, while we are doing this studying we need to support the practitioners on the front lines helping the patients, helping our family members, who are afflicted with this disease.
And they are -- they are helping the patients deal with the burden of the disease.
And we did hear, by the way,what we decided to do, because we are
supposed to summarize what we heard, we put quotes in, in the bars here.
I am not going to take the time to read them. But please, review them as we go along. The burden of the disease is enormous, on individuals, on children, children losing their childhood, people losing lives to this disease.
We know that it is a very complex disorder.
And we need better diagnostic tools.
You have heard that discussed by a lot of the people that summarize. I will not go over it again.
But need to recognize and study the fact that we do not have
sufficient diagnostics and particularly with respect to persistent form of the disease.
We need to review the case definition.
The CDC surveillance criteria is inappropriate for application to
treatment.
But that's exactly what happens, folks.
It is used to deny insurance coverage to individuals.
And it is used to discourage physicians from treating patients with Lyme Disease, and these diseases.
It is much misunderstood in the general medical community.
And frankly, in our experience it is used in the decisions of medical boards to determine how and who to investigate, for the treatment of the diseases with antibiotics.
That needs to stop.
We need a better case definition that is expanded to include all the emerging spectrum of the diseases and recognize that different treatment regimens are appropriate and that the clinician must have the freedom to make an artful decision with respect to how to
practice medicine, in the best interests of their patients.
We need to redefine that criteria, remove the regional biases, how many times have we heard you cannot have Lyme Disease?
We don't have it here in this state.
We need to bring all the information that we heard here, to the general public, and to the general medical community.
We need to include all the diseases in the definition.
We need a better way to report.
Physicians find it too burden somto
report.
We need automated standardized report that covers all states, that is standardized and that includes late manifestations of the disease, or persistent manifestations of the disease and make it easier for the physician to report.
We need a new approach.
Several presenters highlighted the differences in the significant of co-infections and immune suppressing properties.
But like I said most dealt with acute forms of the disease.
We need focus on the persistent forms of the disease.
We need to banish the term post Lyme syndrome.
There is politics folks in how we deal with the labels that we
use.
And when you use post Lyme syndrome you are basically saying you
don't have a disease, you have got a psychological condition. Lets deal with what people really have, lets help them, and find the research that we need to do that.
We need critical research for the 21st century.
Dr. Loft research with the Borellia gene know type, we need to create a database that captures every aspect of the disease.
We need, as we heard, Manhattan like project to deal with this disease.
He was kind enough to say it was hyperbole but that's not
really true.
It is not high ber Boley that's the scope of the kind of project that is needed.
We think that in research we need to look at how the Alzheimers * disease neuro imaging initiative came up with new biomarkers.
Their project leader said that the three-point program they used was extremely important.
They agreed to share the data.
Agreed that every finding would be made public immediately.
And they agreed to renounce ownership in patent rights.
We need T.O. to deal with that issue of the patent rights and whether or not it is inhibiting rather than Fostering research.
So my time is up.
I will try to run through these fast.
Where the research of the focus needs to be, but the important point here is that we need new proposals.
We need fresh blood into this program.
Like I wrote, I am not talking about glass slides. We need new thinking.
We need fresh people coming into the program with new ideas on how to combat these diseases and treat patients.
And we need to replace the CDC surveillance criteria.
Collaboration is extremely important.
That's been emphasized.
I will just let you read the slide.
But we need to find ways to bring all, everybody concerned with this disease, together.
We need the clinicians working with the practitioners, and the
researchers, we need the researchers valuing the information they are getting from the clinicians.
And clinicians and not dismiss ting as anecdotal evidence.
What we have heard here is most of what they have called anecdotal evidence wound up in the slides of a lot of the presenters here as valuable information that demonstrates the consistently see of
the disease across the country.
So while we wait what do we do?
Well, we ask state advocates across the country.
We did also do, I will ask you to read the paper we submitted.
Because we did a national survey of patients but we also have a survey of state advocate leaders and they said these are the most important things.
Doctors are not updated on the existence of Lyme Disease in their
state T needs to be included in the differential diagnosis. So that they have a clue as to how to look at patients when they come to them presenting the diseases, presenting the symptoms, that you have heard about here.
If doctors pursued testing let them know not to simply rely on the alie sacks we have heard all kind of -- it is a decent test.
But it is certainly not the gold standard and we heard a lot about that.
So we need to get doctors to look beyond the simple
serology of the aliza.
And let physicians use the knowledge they have acquired in medical school, through their practice and practice the art, as well as the craft of medicine.
So Lyme Disease is a clinical diagnosis.
Thank you.
Their written presentation to IOM here
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