Petition update

Response from Secretary Alex Azar, U.S. Department of Health and Human Services

Carl Tuttle
Hudson, NH, United States

Dec 27, 2018 — 

Please see the letter below regarding a response from Health and Human Services. It would appear that this is a case of the tail wagging the dog. 

---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: Congresswoman Ann McLane Kuster
Cc: brett.giroir@hhs.gov, Alex.Azar@HHS.GOV, tickbornedisease@hhs.gov (61 undisclosed recipients)
Date: December 26, 2018 at 5:45 PM
Subject: Response from Secretary Alex Azar, Secretary U.S. Department of Health and Human Services

December 26, 2018

Congresswoman Ann McLane Kuster
137 Cannon House Office Building
Washington, DC 20515

Dear Congresswoman Kuster,

I was given permission to forward the following email thread by Renee Kopek who worked in the healthcare system as a Registered Nurse for 35 years.  Ms. Kopek wrote to Secretary Azar describing her experience with Lyme disease which mimics the vast majority of complaints seen all across America.

Based on what you are about to read, it would appear that Health and Human Services is fully compliant with the IDSA/CDC established racketeering scheme to ignore and downplay late stage disabling Lyme disease; a plague that is destroying lives, ending careers while leaving its victim in financial ruin. There are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease.

As you know, ADM Brett P. Giroir, M.D., Assistant Secretary for Health is not answering any of my inquiries as to how the US Centers for Disease has gotten away with this for over three decades. (Complete and utter failure by the CDC) Until those in charge at HHS acknowledge it is the CDC/IDSA holding back proper care of TBD we will see another decade of unimaginable pain and suffering.

As you read the communication below let me remind you that your loved ones are a single tick bite away from experiencing this travesty as are the rest of your constituents.

Carl Tuttle
Hudson, NH


1. Letter to Secretary Alex Azar from Renee Kopek, RN:


---------- Forwarded message --------- 
From: R Kopek <rkopek213@gmail.com> 
Date: Thu, Nov 22, 2018 at 9:55 AM 
Subject: CDC control of Lyme Disease narrative 
To: Alex.Azar@HHS.GOV < Alex.Azar@hhs.gov> 


November 22, 2008

The Honorable Alex Azar, II
Secretary
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Secretary Azar:

I had Lyme Disease develop to Late Stage after a sudden onset swollen left knee that occurred overnight without any injury in July 2004 was ignored by my PCP.  The swelling was intermittent, unrelated to activity, and I was having increasing pain.  For years prior I had episodes of fatigue with migrating joint, muscle pain.  By December I had to beg for an ortho referral (HMO).  Finally was seen and tested for Lyme by ELISA, it was negative so never addressed again.

Will not bore you with my lengthy health story, unfortunately not much different from many others, but I ended up housebound and bedridden by early 2008 with a multitude of puzzling symptoms 9 months on the Medical Merry-Go-Round could not diagnose.  I was finally told by my new PCP (had been dropped by a few practices) that it must by viral and “take antidepressants to ride it out”.   I refused and finally sought help from an Integrative MD.

My health improved over time with his help and lifestyle changes on my part but I was still being ignored by my local medical community, one I had worked in for 35 years as a RN.  I have damage, advanced DDD and my left knee is often swollen, chronic synovitis, has multiple cysts, a macerated lateral meniscus.  I wanted an ortho evaluation in 2011 to see what could be done to help.  I explained my situation to the receptionist on the phone who said that the Doctor would help.  When I arrived the intake person took some info, went out of the room ,came back in and stated “ The doctor will not see you, we don’t do Lyme here, go somewhere else”.

This is what the strict use of IDSA guidelines has done.  I am a leper in the conventional medical community.  I used a PCP for routine CPEs only, the rest of my care was under that of the Integrative MD in NY until last year when I moved from NY to SC.  It is WORSE here, Lyme not recognized at all. Fortunately I have basically learned how to take care of myself, the weird symptoms that sometimes occur will pass.

I was positive for 2 Lyme specific bands on 1st WB.  My immune system was shot. Had reactivated viruses.  After one year of treatment (only 6 weeks Minocycline,NOT long term ABX, many other things addressed) I had a CDC/NYS positive Western Blot .  Had been tested by ELISA multiple times, NEVER positive.  Yet the Health Departments and CDC still push the two tier testing. 

After I regained my mind and physical strength I helped run a local CNY support group.  We heard it all.  A bullseye rash not treated because testing negative, 10 days of antibiotic not helping so not Lyme.   Take the 2 weeks ABX then we will test and if negative it means the treatment worked.  With 50% of local ticks tested positive in Oneida County by NYSDOH still heard people being told by their doctors “Lyme is not a problem around here”  OCHD on TV spots saying needed 36 to 72 hours attachment to contract disease, don’t “overworry”.

I could go on forever BUT this all stems from Medical Providers not having time or inclination to research on their own, they rely on the CDC, the Red Book, the local Health Departments to inform them how to treat tick bites. 

When Zika around NYSDOH sent out warning letters to Physicians.  No such thing was happening with ticks and Lyme.

We need something done soon.  People are bitten in their own yards and the physicians clueless on what to do.  Sometimes it seems to be a purposeful ignorance.  Doctors experienced in treating Late Stage called “quacks”  IgeneX dismissed as invalid even though the lab CLIA and NYS certified.  

Education of the Medical Community on the many faces of Lyme and TBD needs to be taken out of the hands of the CDC who seem to stick to the very old standards of the IDSA and refuse to see the years of failure in using those standards.

What other disease is treated based only on decades old information?

Sincerely,

Renee Kopek
Rock Hill, SC   29732

Formerly from Deerfield NY

 

2. Response to Renee Kopek, RN from the U.S. Centers for Disease Control:

 

From: CDCExecSec@cdc.gov (CDC)
Sent: Wednesday, December 26, 2018 10:53 AM
To: rkopek213@gmail.com
Subject: Lyme Disease

Dear Ms. Kopek:

Thank you for letter to Mr. Alex Azar, Secretary of Health and Human Services (HHS), regarding Lyme disease. HHS forwarded your letter to the Centers for Disease Control and Prevention (CDC) for a response.

We are sorry to hear about your health issues and are glad that your situation has improved.

CDC shares your concern that Lyme disease patients should receive the best possible diagnosis and treatment to prevent suffering. We are also concerned about the increasing numbers of cases of Lyme and other tick-borne diseases.

The agency continually monitors and evaluates new scientific information about Lyme disease and annually updates its Lyme disease strategic plan, reviews accomplishments, and sets goals and project milestones. For more information about these projects, see www.cdc.gov/lyme/why-is-cdc-concerned-about-lyme-disease.html

We also provide information for health care providers at www.cdc.gov/lyme/healthcare/index.html and educational materials for a variety of audiences at www.cdc.gov/lyme/toolkit/index.html

The Infectious Diseases Society of America (IDSA) is currently updating its Lyme disease guidelines. CDC will evaluate IDSA’s new guidelines once they are finalized and published.

In addition, the Tick-Borne Disease Working Group, part of a federal advisory committee administered by HHS under the 21st Century Cures Act, has been convened to provide subject matter expertise, review federal efforts related to all tick-borne diseases, help ensure interagency coordination and minimize overlap, and examine research priorities. We encourage you to view these public meetings online. For more information, see www.hhs.gov/ash/advisory-committees/tickbornedisease/index.html

Thank you, again, for your letter and your work on behalf of others with Lyme disease. We hope this information is helpful to you.

Sincerely,

Sandra Cashman, MS

Executive Secretary

Office of the Chief of Staff, CDC

 

3. Reply to the Centers for Disease Control from Renee Kopek, RN:

 

From: R Kopek
Sent: Wednesday, December 26, 2018 11:10 AM
To: CDCExecSec (CDC)
Subject: RE: Lyme Disease

I am sorry but your response is a joke.  Not to be disrespectful but the resources you have given me have done little to nothing to help those of us with Late Stage Lyme who were undiagnosed years, sometimes decades.

I was finally diagnosed in 2008 after living with what was labeled CFIDS for years. A swollen knee was ignored, migrating muscle/joint pain ignored. Declining stamina, loss of function ignored. Then my loss of cognitive ability ignored, was blamed on me as it is with MANY others with cases similar to mine.

I worked in the healthcare system as a RN for 35 years.  I lived in NY State, a Lyme hotbed.  Yet no one in my area, including me, knew much about Lyme or tick borne disease.  In 2008 local Utica NY doctors were still denying Lyme was a problem in the area as was the local Health Department.  They still are not much better informed to this day.

The IDSA/CDC members are steeped in denial that anything other than acute Lyme exists, use the label “Post Treatment Lyme Disease Syndrome” which is an insult.  ANY infection not properly treated is still an infection but somehow Lyme is not.

They have tried other labels such as MUS “Medically Unexplained Symptoms”  and have come right out and called us “Lyme Loonies”.  No disease should be disrespected by those making the guidelines to diagnose and treat it.

I appreciate the response but the only way I did improve my health was to research outside the IDSA and CDC box.  If I had not done that I would not be alive today, it was that bad.  And I live daily with the damage done by a longstanding infection.  THAT is what we want recognized and someone actually looking for a way to improve OUR quality of life.

Thank you for your time

Renee Kopek


Keep fighting for people power!

Politicians and rich CEOs shouldn't make all the decisions. Today we ask you to help keep Change.org free and independent. Our job as a public benefit company is to help petitions like this one fight back and get heard. If everyone who saw this chipped in monthly we'd secure Change.org's future today. Help us hold the powerful to account. Can you spare a minute to become a member today?

I'll power Change with $5 monthlyPayment method

Discussion

Please enter a comment.

We were unable to post your comment. Please try again.