Chronic Lyme Patients Can't Get Treated CDC Director Told by National Patient Group
Lack of treating physicians, inadequate testing, and under diagnosis are leading to more chronic Lyme disease with surveillance problems contributing to lack of focus & funding
JACKSON, New Jersey (July 19, 2006) ─Lyme patients have fought for years to have their public voice heard by the Centers for Disease Control and Prevention, CDC. They finally got their opportunity when the Lyme Disease Association, a national non-profit consisting of patients and families of patients, met with the nation's leading public health officer, CDC Director, Dr. Julie Gerberding. She and other CDC officials listened as the Lyme Disease Association and four Congressmen addressed rising Lyme cases, chronic disease and causes, inability to get treatment, and lack of funding. The government only expends ~$33M each year on Lyme disease despite about 220,000 new cases of Lyme disease nationally that meet CDC surveillance criteria. That does not even include cases, usually chronic, which fall outside that non-diagnostic criteria.
Dr. Brian Fallon from Columbia University College of Physicians and Surgeons presented long-term Lyme disease treatment studies and their significance, including his recently completed NIH-funded chronic Lyme disease study showing improvement in patients. LDA president Pat Smith discussed the need for direct communication between patient groups and the CDC and between treating physicians and the CDC. Congressman Christopher Smith (no relation) offered to host a forum for those issues in New Jersey.
Ms. Smith presented the need for mandatory lab reporting in each state, uniform surveillance, and a dual CDC reporting system allowing for clinical cases to be accepted in a separate tier of reporting. She also recommended removing the ELISA as a screening test due to its insensitivity and allowing the Western Blot to be used alone for diagnosis, after re-adding two bands removed by CDC in the mid 90's. ``New technology also needs to be looked at in the testing arena,'' Smith added, referring to a recently published CDC article on chronic diseases and the use of cutting edge technology to diagnose. Researcher Dr. Steven Schutzer, New Jersey Medical School, who also attended, affirmed that need.
Ms. Smith asked the CDC to write every state health department informing them that the CDC criteria are not meant for diagnostic purposes, only for surveillance. Health departments can then notify physicians in their states. ``Too many people,'' she said, ``are being refused diagnosis, treatment, and insurance reimbursement based on surveillance criteria. This is leading to a huge increase in chronic disease, costing people their health, homes, jobs, education, and childhood.'' LDA presented a comprehensive notebook including statements from dozens of Lyme patients attesting to their diagnostic and treatment problems often related to CDC surveillance criteria.
Lorraine Johnson, JD, MBA, Executive Director of CALDA and Member of the LDA Professional Advisory Board, spoke about peer review and guideline issues. Her main thrust was explaining how unsettled science and two sets of treatment guidelines have led to two standards of care, and all physicians need to be aware that there is a standard which allows for long-term treatment of chronic patients. ``What we would like to see is for the CDC to treat Lyme disease the same way it treats prostate cancer--providing patients with information regarding treatment options until the science is more settled,'' she said.
The LDA-initiated meeting was hosted by Congressman Christopher Smith (R-NJ). Other US Representatives who personally attended were Congressman Tim Bishop (D-NY), Congresswoman Sue Kelly (R-NY) and Congressman Wayne Gilchrest (R-MD). Each spoke about rising Lyme disease cases in his/her state and personal experiences through family and friends with the disease. Staff from the offices of Senator Christopher Dodd (D-CT) and Senator Chuck Schumer (D-NY) also attended the meeting.
Dr. Gerberding agreed that tick-borne diseases are very complicated diseases that are poorly understood. There is a lack of awareness and early primary care is critical. Her concern that there is little government funding for tick-borne diseases dovetails with the purpose of the bills currently in Congress, HR 3427 (Smith-Kelly) and S 1479 (Dodd-Santorum) which will provide $100 million for Lyme disease research, prevention, physician education, and surveillance issues. 73 congressmen currently co-sponsor the House version and over 100 Lyme groups support it.
In closing, the LDA mentioned the unchecked spread of the deer tick populations nationwide over the past 20 years and how we need to learn from history and try to stop the spread of the more aggressive lone star tick now invading the Northeast.
The CDC is now reviewing the recommendations made by the Lyme Disease Association.
[ 23. July 2006, 08:28 PM: Message edited by: lymedesign ]
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
Thanks, Lymedesign! It's good to hear something positive in light of all that's gone on with the Medical Board Hearing in North Carolina.
I think this is the time for the Lyme community to work together & flood Dr Gerberding's office with letters. It would reinforce the info this group presented in the meeting.
There's no need to repeat scientific studies, treatment protocols, testing, etc.
Each person needs to VERY briefly include how difficult it was to get a diagnosis & tell what Lyme has done to their quality of life!! Put it on a personal level!! Tell it like it is!!
Also, each story would have more impact if it had a photo of the Lyme patient and/or Lyme patient & their family.
On their website (www.lyme.org), the Lyme Disease Foundation has "The Faces of Lyme Disease." I've found the stories very touching, especially seeing the picture of that person. This has a big impact on those who read the stories.
Lyme needs to be personalized.
Change needs to come from the top. If the CDC would recognize the problem & listen to what Lyme patients are dealing with, they would see TBDs from a different perspective.
The meeting has laid the groundwork. Now, each of us needs to do our part. In my opinion, this is top priority now!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
I went to the CDC website and found a bio. on the director, Dr. Julie Gerberding.
I called to get the Direct Mail address for her, it is as follows:
Dr. Julie Gerberding CDC Director 1600 Clifton Road Mail Stop #D14 Atlanta, GA 30333
Here is the bio.,
Julie Louise Gerberding, M.D., M.P.H.
Dr. Julie Louise Gerberding, MD, MPHFrom the Director
Welcome to the Centers for Disease Control and Prevention.
Each day at CDC, we try to imagine a safer, healthier world. A world where infants are born healthy and cared for -- so, as children, they can arrive at school safe, well-nourished, and ready to learn. A world in which teenagers have the information, motivation, and hope they need to make healthy choices about their lifestyles and behaviors. A world in which adults enjoy active and productive lives in safe communities where they can remain independent and engaged with family and friends throughout their senior years.
Imagining this safer, healthier world brings us closer to reaching our vision of "Healthy People in a Healthy World-Through Prevention."
For nearly 60 years, CDC's mission has been dedicated to protecting health and promoting quality of life through the prevention and control of disease, injury, and disability. We are committed to programs that reduce the health and economic consequences of the leading causes of death and disability and that ensure a long, productive, healthy life for all people.
We take our role very seriously, as CDC protects the health of Americans on many levels and in many arenas. We conduct surveillance on a wide range of health threats -- from infectious diseases to bioterrorism to environmental hazards. When diseases break out around the globe, CDC responds at a moment's notice, lending its expertise and resources to conduct outbreak investigations and provide technical assistance.
We also provide funding for state and local health departments, community based organizations, and academic institutions for a wide array of public health programs and research. Each day, Americans benefit from those activities through the safety and health tips we promote directly to the public, the training and education we offer our partners, and the guidance and recommendations we provide for health care providers.
So much has changed in the world since the CDC was founded in 1946. We have had to find new ways to carry out our mission and meet new threats head-on, whether a terrorist attack or the next global epidemic of an infectious disease like SARS or avian flu. As we look forward to the next 60 years and beyond, we will continue to position ourselves as the nation's health protection leader.
CDC is an exciting place to work, multi-faceted, constantly in motion. And it makes a real difference in the world, again and again. I am privileged to serve as the Director, and encourage you to explore the wealth of life-saving information on the CDC Web site.
Biographical Sketch
CDC Director, Julie Louise Gerberding, MD, MPH has been leading the Centers for Disease Control and Prevention (CDC) and the Administrator of the Agency for Toxic Substances and Disease Registry (ATSDR) since July 2002. She also serves as an Associate Clinical Professor of Medicine at Emory University and an Associate Professor of Medicine at the University of California at San Francisco. Read the full biographical sketch.
divider Related Topic Areas bullet Biography bullet Staff bullet Presentations bullet Futures Initiative bullet Health Protection Research Initiative bullet State of CDC
ttp://www.cdc.gov/about/director.htm
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
Wanted to post this seperately from above so it did't get overlooked.
I want to submit the above news release to some local papers. Should I assume the LDA has already done this or should I go ahead and do this. Any tips on how to get some priority on this???
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
I said about a week ago here that maybe we should flood the CDC with letters....Well, I think the handwriting is on the wall for that.
Can we get in touch with Pat Smith and ask if that sounds like a good idea??
Was this posted in Medical? I didn't see it this morning.
Hope this is a GOOD step in the RIGHT direction. At least the CDC was willing to have the meeting!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
This is good news. Thanks for posting this lymedesign.
I hope someone can move this to medical. Not many people make it over to general.
Lou B can we move this to medical??
Lymetoo. I like your idea about flooding the CDC with letters!!!!
If we wanted to flood the CDC with letters does anyone happen to have the right department name And who to make "attention too" and adress to direct them too?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Dana, Copy the thread link here, and then go to the top of ANY of Lou B's posts. Send him a PM, private message, and include the link asking him to move it.
This is the only way to guarantee HE WILL READ this since he doesn't come here often & does NOT read all notes; a few here & there....
posted
Many thanks to Pat Smith, Lorraine, the doctors and legislators who attended this session. Hope we will see some changes. They are surely overdue.
[ 24. July 2006, 10:14 AM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
lymedesign,
Please edit/PENCIL icon your topic line and ADD:
CDC's address for writing letters ASAP!
We want to make sure folks see this & HOPEFULLY ALL WILL WRITE SOMETHING pertaining to their OWN lyme disease story or ask a friend/relative to assist or WRITE YOUR LETTER!
I wasn't able to edit my own post, don't know why, that wasn't a problem before, not it is.
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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