LYMEPOLICYWONK: The CDC Definition of HIV: Does History Repeat Itself?
Does history repeat itself? Did you know that the initial CDC definition of AIDS did not include women? And, because it did not include them, women were not included in research and they were denied disability payments. So much for disease definitions just being about “surveillance”. It took them 4 years to change the definition and there were a lot of government hearings. Turns out the hearings were just for “show and tell”. Not real hearings intended to accomplish real things. Kind of reminds me of the IOM hearings going on right now. Here’s an interview from Maxine Wolfe in 2004 at ACT UP describing the scene. Let me know if you see any parallels here. I sure hope I don’t.
Maxine Wolfe:
Originally, they wanted us to be part of the planning, and Linda was part of the planning, but we made it clear that we would not rubber-stamp what they did. And so, at the beginning, it was really interesting because there were all these women, who were from all over the country, who had been waiting for this day, because all of this stuff had been suppressed.
So, they [women and researchers] were all willing to do the best conference there was, but the government wasn’t. And, what they used to do and they still do is they run their own conferences, and they put the researchers there that they want to be there, who are going to say what they want those people to say.. .. And so, we, basically — Linda, eventually dropped out of the planning because she said she wouldn’t have her name associated with a conference that had been — after the whole schedule had been set, the government people took it and totally decimated it, and put only their people there.”
Well, they worked a long time and finally got women included in the definition. How about all of the chronic Lyme patients that are not included in the surveillance definition now? Think that will change? Happened before, will it happen again? Or do only the bad parts repeat?
You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.
Now that I have a disease that doesn't exist, nothing surprises me.
The CDC is doing the same thing with XMRV, a retrovirus (one of three, HIV is one) found in patients of Lyme, CFS, and FM.
I pray that this will happen with Lyme Disease. If someone very influential were diagnosed and had any of the problems we do, I bet a lot more would be done! BTW. It is hard for me when I see people that are DIAGNOSED with Chronic Fatigue Syndrome, or Worse Fibro Myalga (?spelling) Please educate yourselves before accepting this as a diagnosis. If you really think about it, and have a simple understanding of medical terminology, it CAN NOT MAKE SENSE! Take each word and define it and see what you come up with, a bunch of __! Chronic, meaning. A lot, most of the time, etc, fatigue, tired, = Always tired,Tired A-lot! Then they throw syndrome in there for good measure! These are YOUR SYMPTOMS that you are being DIAGNOSED WITH! Ask WHY you are always tired! Fibro MYALGA. FM. Fibro is MUSCLE, MYALGA IS PAIN! YOU ARE DIAGNOSED WITH MUSCLE PAIN! ASK WHY you have muscle pain, if you don't get answers, do the work yourself and FIND OUT WHAT IS MAKING YOU SICK! Why does everyone put Dr.s on such a pedestal! They are PRACTICING MEDICINE! THEY DO NOT KNOW EVERYTHING! YOU MAY SAVE YOUR OWN LIFE, Dr's give out these diagnoses that are a catch all. If they don't know what it is they give you a diagnoses to make everyone feel better! Is rather have a correct diafnosis rather than any just to make me feel better. In the long run you are NOT going to feel better, you may die! DO YOUR HOMEWORK WHEN YOU OR A FAMILY MEMBER ARE GIVEN A DIAGNOSIS! IT MAY SAVE YOUR LIFE!
Great comment, John – I'd like it on a t-shirt.
I hope the IOM Lyme hearings are different. I didn't realize they didn't count women in the AIDS defintion. It sure feels like we're in a holding pattern: same problems/different disease.
Not only do they not count chronic Lyme, they don't even count cases using the same definition from state to state. This causes problems – we've seen insurance companies deny claims because "there's no Lyme in the region" and patient after patient become chronically ill and disabled because they were left untreated since "Lyme is not here." Just look at the survellience numbers, right? WRONG.
Look at it this way: if you count influenza cases in one state as "those with a cough", but in another as, "those with a headache", then you won't really be able to rely upon or compare the numbers, will you? This is exactly what is occurring with Lyme disease reporting.
In the Northeast, once a county is deemed endemic (by documenting the first 2 cases using CDC 2-tier testing), then RASHES are counted as cases in those counties. This, according to CDC Lyme survellience guidelines. So, naturally, we've seen case numbers soar there.
But guess what? In the Southeast, at least up until 2009, they NEVER counted rashes as cases or even declared any counties endemic, despite the many, many counties over the years that have documented two or more cases with the exact same tests they use up north (and the thousands of people coming forward with rashes and symptoms after tick bites). Reportedly, over 50 counties in TN and GA, and over 45 in South Carolina and Alabama, have documented 2 Lyme disease cases verified with the exact same positive CDC-required tests (ELISA followed by WB) used to count northeastern cases. But, instead of declaring the southeastern counties "endemic" and then counting rashes as cases as standardized CDC survellience criteria suggests, these entire STATES were declared "NON ENDEMIC" and our cases were never counted.
It is only with the 2008 case definition that a few states (GA and NC) have begun using the CDC's reporting practices and, lo and behold, we have a few endemic counties now, making it look like Lyme is slowly creeping down here. It's not…it's been here for years, as documented in ticks, small mammals, birds, dogs, and many wild reptiles. There are many folks who got Lyme here 20 years ago and they never traveled to "endemic" states. Where there's smoke, there's fire: our cases simply have never been counted and many are dismissed as "false positives" or "STARI" without further investigation, despite tick bites, EMs, symptoms and positive serology (and despite the fact that false positives are rare, 1-5%). Oh, and, yes, I nearly forgot – despite the fact that the CDC itself declared 27 Georgia counties had native Lyme cases back in the late 1980's, and they recorded 715 human cases here in a single year, most found by Lyme testing performed at our county health departments.
Public health officials do not seem to point out the discrepancies in reporting practices nor alert folks to the fact that they can't really determine true prevalence in areas because cases aren't counted in the same way. Instead, we keep hearing 90% of cases occur in the NE – when that's impossible to say. How can one hold up case numbers to compare? They aren't valid. (Counting rashes as cases in one region but not in another causes the case numbers to appear low, even when they're not).
Why hasn't anyone in our government or the media ever asked these questions and compared reporting practices in every state? It seems to be taken for granted that these statistics are all determined the same way and that they are correct. CDC reporting criteria is NOT practiced in many states. It's rather odd that our reported case numbers are so low, yet every person you speak with knows several people who've contracted Lyme here across the SE, and patients are complaining their cases are not taken seriously or recognized. Many patients are medical providers themselves.
It's time to ask the tough questions, media!
Thanks for the great article, Lorraine!
I hope the IOM Lyme hearings are different. I didn't realize they didn't count women in the AIDS defintion. It sure feels like we're in a holding pattern: same problems/different disease.
Not only do they not count chronic Lyme, they don't even count cases using the same definition from state to state. This causes problems – we've seen insurance companies deny claims because "there's no Lyme in the region" and patient after patient become chronically ill and disabled because they were left untreated since "Lyme is not here." Just look at the survellience numbers, right? WRONG.
Look at it this way: if you count influenza cases in one state as "those with a cough", but in another as, "those with a headache", then you won't really be able to rely upon or compare the numbers, will you? This is exactly what is occurring with Lyme disease reporting.
In the Northeast, once a county is deemed endemic (by documenting the first 2 cases using CDC 2-tier testing), then RASHES are counted as cases in those counties. This, according to CDC Lyme survellience guidelines. So, naturally, we've seen case numbers soar there.
But guess what? In the Southeast, at least up until 2009, they NEVER counted rashes as cases or even declared any counties endemic, despite the many, many counties over the years that have documented two or more cases with the exact same tests they use up north (and the thousands of people coming forward with rashes and symptoms after tick bites). Reportedly, over 50 counties in TN and GA, and over 45 in South Carolina and Alabama, have documented 2 Lyme disease cases verified with the exact same positive CDC-required tests (ELISA followed by WB) used to count northeastern cases. But, instead of declaring the southeastern counties "endemic" and then counting rashes as cases as standardized CDC survellience criteria suggests, these entire STATES were declared "NON ENDEMIC" and our cases were never counted.
It is only with the 2008 case definition that a few states (GA and NC) have begun using the CDC's reporting practices and, lo and behold, we have a few endemic counties now, making it look like Lyme is slowly creeping down here. It's not…it's been here for years, as documented in ticks, small mammals, birds, dogs, and many wild reptiles. There are many folks who got Lyme here 20 years ago and they never traveled to "endemic" states. Where there's smoke, there's fire: our cases simply have never been counted and many are dismissed as "false positives" or "STARI" without further investigation, despite tick bites, EMs, symptoms and positive serology (and despite the fact that false positives are rare, 1-5%). Oh, and, yes, I nearly forgot – despite the fact that the CDC itself declared 27 Georgia counties had native Lyme cases back in the late 1980's, and they recorded 715 human cases here in a single year, most found by Lyme testing performed at our county health departments.
Public health officials do not seem to point out the discrepancies in reporting practices nor alert folks to the fact that they can't really determine true prevalence in areas because cases aren't counted in the same way. Instead, we keep hearing 90% of cases occur in the NE – when that's impossible to say. How can one hold up case numbers to compare? They aren't valid. (Counting rashes as cases in one region but not in another causes the case numbers to appear low, even when they're not).
Why hasn't anyone in our government or the media ever asked these questions and compared reporting practices in every state? It seems to be taken for granted that these statistics are all determined the same way and that they are correct. CDC reporting criteria is NOT practiced in many states. It's rather odd that our reported case numbers are so low, yet every person you speak with knows several people who've contracted Lyme here across the SE, and patients are complaining their cases are not taken seriously or recognized. Many patients are medical providers themselves.
It's time to ask the tough questions, media!
Thanks for the great article, Lorraine!
Same thing different day. Why do we not sue, using a class action or even single person against (some particular agency) in order to start setting precedents? With enough people helping supply information, background and we pray for inside information in form of industry whistle-blower only good can come from having court precedence! Tell me what I am missing on this. Thanks.