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» LymeNet Flash » Questions and Discussion » Activism » Today! Lyme Patients Call on Congress January 26-27

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Author Topic: Today! Lyme Patients Call on Congress January 26-27
KarlaL
LymeNet Contributor
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Lyme Patients Call on Congress

https://www.facebook.com/events/1739734586248693/

January 26 - January 27

United States

Invited by Bruce Alan Fries

Hosted by Lyme Patient Advocacy Project:

https://www.facebook.com/Lyme-Patient-Advocacy-Project-1710662869153989/


Lyme patients and patient advocates from around the United States will join together and call on Congress to take decisive action to address the out of control epidemic of Lyme disease and related tick-borne illnesses.

In less than 10 minutes, you can make a difference by making three phone calls to your representatives in Congress to express your concerns and call for action.

We are concerned about CDC’s failure to contain this epidemic, we are concerned about violations of federal laws and rules on open goverment, and we are concerned about conflicts of interest that contribute to the preventable suffering of thousands of patients.

CDC continues to provide preferential treatment to the Infectious Diseases Society of America (IDSA) by promoting the 2006 IDSA guidelines for Lyme disease, which are non compliant with federal standards, while withholding information from the public about the 2014 guidelines from ILADS, which are fully compliant.

Especially disturbing is that the CDC officials providing the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a serious conflict of interest.

CDC’s preferential treatment harms many thousands of chronically ill patients, who are misdiagnosed and denied medically necessary treatment due to restrictions imposed by the IDSA guidelines. Thousands of patients face financial hardships from out-of-pocket costs and lost income. The burden on our economy is enormous, the suffering widespread, and much of this is preventable.


CALLING ON CONGRESS
Members of Congress are called “representatives” because their job is to represent the interests of their “constituents.” You are represented in Congress by two senators from your state and one representative from a district within your state.

When you request action from a government agency or Congress you are “petitioning” them, whether your request is via a letter, phone call, in-person meeting, or signature on a formal petition.

Senate staff have reported that telephone calls make a much stronger impression than email, because emails can easily be automated. They say getting 100 phone calls on a topic in a single day is considered “a lot”. We can do that…and much more.

INSTRUCTIONS
It’s easy and takes less than 10 minutes. All you need to do is make three phone calls: one call to each of your U.S. Senators, and one call to your representative in the U.S. House.

A sample script will be posted a few days prior to the start. You can find the phone numbers for each representative at this website: https://www.nationalpriorities.org/take-action/know-your-representative

This event has pinned post with a photo of a phone. After you have made your phone calls “like” the photo. The number of likes will provide a real time counter to monitor the response. Also, post the name of your state, so we can gauge the response in each state.

SPREAD THE WORD
Ask your friends, family and neighbors to participate. If they are not on Facebook, email this information to them. To make it easy for neighbors, print copies of the script with the telephone numbers. Ask if they are willing to spend 10 minutes to make three phone calls that will help provide a wakeup call to Congress to act decisively to address this out of control epidemic.

PETITIONS
This campaign leverages three Change.org petitions, with more than 65,000 combined signatures. Please sign them to show your support. By participating in this campaign, you are exercising your First Amendment right to “petition the government for redress of grievances.”

• End Preferential Treatment of the IDSA Guidelines for Lyme Disease petition to the Centers for Disease Control and Prevention
http://tinyurl.com/CDCpetition

• Calling for Congressional Investigation of CDC, IDSA & ALDF petition to the U.S. House of Representatives, U.S. Senate
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

• Legalize Lyme Disease petition to President Barack Obama, U.S. House of Representatives, U.S. Senate.
https://www.change.org/p/president-obama-and-congress-a-call-to-legalize-lyme-disease

TWITTER
If you are on Twitter, please send the following sequence of tweets to each of your representatives. You can find the Twitter handles at: https://www.nationalpriorities.org/take-action/know-your-representative

@ [Twitter Handle] I am your constituent. I have a grievance with CDC’s Lyme disease program #OneBiteAway #CDCoversight #Lymegate

@ [Twitter Handle] CDC has failed to protect the public from Lyme disease #OneBiteAway #CDCoversight #Lymegate

@ [Twitter Handle] I call for Congressional oversight of CDC’s Lyme disease program #OneBiteAway #CDCoversight #Lymegate

@ [Twitter Handle] I call for reform of CDC’s Division of Vector-Borne Diseases #OneBiteAway #CDCoversight #Lymegate

@ [Twitter Handle] Why does CDC reject good science and stick to failed policies on Lyme? #OneBiteAway #CDCoversight #Lymegate

@ [Twitter Handle] Why does CDC allow a private group to determine federal policy on Lyme disease? #OneBiteAway #CDCoversight

@ [Twitter Handle] Why does CDC provide preferential treatment to the Infectious Diseases Society of America? #OneBiteAway #CDCoversight

@ [Twitter Handle] Why did IDSA pass a resolution to “oppose patient legislative initiatives”? #OneBiteAway #CDCoversight #Lymegate

@ [Twitter Handle] Why did CDC & NIH employees attend secret meetings with Ad Hoc Lyme Group? #OneBiteAway #CDCoversight #Lymegate

@ [Twitter Handle] Why did a disproportionate amount of Lyme research $$ go to Yale, NY Med. College #OneBiteAway #CDCoversight #Lymegate

@ [Twitter Handle] Why did CDC purchase $15K of “tick cards” from American Lyme Disease Foundation? OneBiteAway #CDCoversight #Lymegate

[ 01-26-2016, 06:40 AM: Message edited by: KarlaL ]

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
LymeNet Contributor
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POSITION PAPER

Here's a link to the position paper for this campaign. Like many people, you probably will be outraged when you read about CDC's failure to protect the public health, and how CDC/IDSA conflicts of interest and CDC's preferential treatment of IDSA make matters worse and harms chronically ill patients, who are misdiagnosed and denied medically necessary treatment due to restrictions imposed by the IDSA guidelines for Lyme disease.

http://www.lymepatientadvocacy.org/

[ 01-26-2016, 06:42 AM: Message edited by: KarlaL ]

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
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Member # 29631

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This Action Alert Facebook event page now has a script available.

https://www.facebook.com/events/1739734586248693/

Lyme patients and patient advocates from around the United States will join together and call on Congress to take decisive action to address the out of control epidemic of Lyme disease and related tick-borne illnesses.

REQUESTED ACTION
Make three phone calls: one call to each of your U.S. Senators, and one call to your representative in the U.S. House.
Visit the following link to find contact information for Congress:
www.contactingthecongress.org/

This event has pinned post with a photo of a phone. After you have made your phone calls “like” the photo. The number of likes will provide a real time counter to monitor the response. Also, post the name of your state, so we can gauge the response in each state.

ONE MINUTE SCRIPT
1. I am a constituent of [senator or representative name] and I would like to register my concern on an important issue.

2. I’m concerned about CDC’s handling of the Lyme disease epidemic and CDC’s preferential treatment of a private organization and other conflicts of interest.

[It’s ok to add a personal comment by mentioning that you, yourself, a family member or friend has Lyme disease. Try to keep the call short, though, so that others can get through.]

3. I request that [senator or representative name] review this matter and ensure that CDC’s Lyme disease program is subject to proper Congressional oversight.

4. [Optional for calls to senators]
If you would like to register support for the Lyme bill that’s pending in the Senate (S.1503, The Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2016), include the statement:

Please ask [senator name] to co-sponsor bill S. 1503.

5. I would appreciate a reply once [senator or representative name] has had a chance to look into this matter.

6. Thank you.

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
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Please click the Facebook event link for more information this call in/tweet campaign to be held today and tomorrow, January 26th and 27th. Anyone who is able to make three phone calls to their US Senators and Representative can participate. It's also easy to use the Facebook event page to invite your family and friends to join you!

KarlaL

www.Facebook.com/events/1739734586248693

Lyme Patients to Call on Congress for Decisive Action on Epidemic

Advocates demand reform of CDC Lyme disease program


Washington, DC – WEBWIRE – Friday, January 22, 2016

https://www.webwire.com/ViewPressRel.asp?aId=201786

Time for Decisive Action from Congress
It has been 40 years since Lyme disease was identified, yet CDC has failed to protect the public health and made matters worse by endorsing outdated treatment guidelines that misrepresent science and restrict access to care for chronically ill patients.
On January 26 - 27, a different kind of telethon will take place when Lyme patients and their supporters from coast to coast will make phone calls to their Congressional representatives demanding more attention be paid to the growing epidemic of Lyme disease—what many people believe to be the greatest threat to public health since the AIDS epidemic.

According to Debra McGregor, of the Texas Lyme Disease Association and a co-organizer of the campaign, “Unreliable tests, inadequate treatment regimens, insufficient funding for research, ineffective programs for prevention, combined with CDC’s endorsement of outdated treatment guidelines have created a perfect storm of unmet medical need and patient suffering.”

She continues, “Hundreds of thousands of patients suffer a greatly diminished quality of life; a tragedy compounded by severe financial hardships from out-of-pocket costs and lost income.”

Lyme disease continues to spread rapidly, with a 320% increase in the number of high risk counties from 1992 to 2012. The number of new cases annually acknowledged by CDC has increased dramatically from just 10,000 in 1995 to more than 300,000 in 2013—six times more than HIV/AIDS—and likely many more due to underreporting and misdiagnosis

A review of studies from 1992 – 2008, shows that the two-tier test endorsed by CDC misses more than half the cases, even in the late stages of the disease. A 2015 report by the Johns Hopkins Bloomberg School of Public Health shows that treatment regimens endorsed by CDC leave up to 36 percent with persistent symptoms.

The position paper for the telephone call campaign says CDC provides preferential treatment to the Infectious Diseases Society of America (IDSA) by promoting the 2006 IDSA guidelines for Lyme disease, which are non compliant with federal standards, while withholding information from the public about the 2014 guidelines from ILADS, which are compliant with current standards.

According to Bruce Fries, a co-organizer of the campaign and member of the Mayday Project advocacy group, “It has been 40 years since Lyme disease was identified, yet CDC has failed to protect the public health and made matters worse by endorsing outdated treatment guidelines that misrepresent science and restrict access to care for chronically ill patients.”

What’s even more troubling says Fries “is that CDC officials who are providing the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a glaring and long-standing conflict of interest.”

Fries is also concerned that members of the IDSA guidelines review panel are awarded a disproportionate share of CDC and NIH research grants for Lyme disease, with two institutions, Yale University and New York Medical College, receiving more than $52 million over the past 17 years with few tangible benefits to patients.

In addition to legislation, such as S.1503, the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2016, which is under consideration in the U.S. Senate, callers want stringent legislative remedies to address the underlying problems and compel reforms of the CDC and NIH grant award process.

McGregor adds, “The costs of ignoring these underlying issues is continued unnecessary suffering and an escalating economic burden to our society.”

The two-day campaign is the result of collaboration of advocates and advocacy groups who are working together for the collective good of the community.

The complete text of the position paper for the campaign is available at: www.LymePatientAdvocacy.org

More details can be found at: www.Facebook.com/events/1739734586248693

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
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From the "Lyme Patients Call on Congress" event page; "OPM announced that the Federal goverment will be closed Tuesday. You can still make the phone calls and leave a message today. If you want to speak to a person, you can call Wednesday. Even though OPM announced the closing, many Senate offices will be open."

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
me
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Bump. Let's work together to try and make a change. Please take time to do this!
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NanceLynn
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Better a bit late than never ... I called my DC representatives. Thank you for the reminder and for making it so easy.
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me
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Yay, Nance!!!
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me
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Bump. Let's try and make a difference. Please take a few minutes to make these very important calls. Thank you!!!
Posts: 1431 | From USA | Registered: Mar 2015  |  IP: Logged | Report this post to a Moderator
KarlaL
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Both my MA Representative and Senators have received a number of calls, so we are getting their attention. Keep those calls coming!

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
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Member # 29631

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From the Lyme Patient Advocacy Project
January 27 at 9:53pm ·

https://www.facebook.com/events/1739734586248693/

Thanks so much to everyone who participated in the Lyme telethon. And thanks to everyone who collaborated as co-organizers, state coordinators, writers, editors, reviewers, and advisors.

Everything went well, and many of the senate offices reported that they had received a lot of calls. Several callers were invited to set up meetings with the aide responsible for healthcare policy.

Our best estimate is that we generated more than 5,000 phone calls. We will have a better estimate once we complete the follow-up calls to the senate offices Thursday and Friday.

If anyone missed today, or couldn’t get through, it’s fine to call Thursday. Every call still counts, and every email counts.

This was a great example of collective action and citizen democracy, and it’s the beginning of a process. Next week state coordinators will make follow-up phone calls with their Congressional representatives. Many will also schedule meetings.

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KarlaL

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KarlaL
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Good News! The press release about the recent Lyme Advocacy Action is getting more than a thousand hits a day and the interview will be covered in Outbreak News Radio on Monday or Tuesday.

https://www.webwire.com/ViewPressRel.asp?aId=201786

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
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Lyme Warrior Princess Sammie, Grievances with the CDC, IDSA

Posted by Robert Herriman on February 2, 2016 // 1 Comment

The Jan. 31 airing of the Outbreak News This Week Radio show centered around the ever controversial and misunderstood tick borne illness, Lyme disease.

Outbreak News Radio/Robert Herriman

http://outbreaknewstoday.com/lyme-warrior-princess-sammie-grievances-with-the-cdc-idsa-97582/

During the first half of the show I talked to a Georgia teen suffering with Lyme and a couple of co-infections and her mother concerning her situation and battle with Lyme disease. 15-year-old “Lyme Warrior Princess”, Sammie Moss and her mom, Kym Manglona discussed Sammie’s illness, problems with diagnosis and treatment and their upcoming trip to Germany to receive apparently 97% successful holistic therapy in an attempt to put Sammie’s suffering behind them.

Visit their Facebook page to learn more about their journey.

In the second half, I talked to Bruce Fries with the Mayday Project, a Lyme disease advocacy group to talk about last week’s telephone call-to-action where hundreds of Lyme sufferers called their Representatives and Senators to take decisive action to combat the growing epidemic of Lyme disease.

In addition, Mr Fries and I went over some issues they have with the CDC and the Infectious Diseases Society of America (IDSA) concerning preferential treatment, conflicts of interest and much more. See their position paper HERE:

http://www.lymepatientadvocacy.org/

Just a note, I did contact the IDSA to see if someone would appear on the show to address the issues Fries discussed and the above position paper; however, I received the following response from a spokesperson with the organization, Matt Sobczak:

“Hi, Robert – Thanks for reaching out to IDSA regarding this request. Unfortunately, we will not be able to participate.”

Let me say, the offer stands as I have no skin in the game and just want to get all the voices from the various parties out there. NOTE: Listen next Sunday at 8 pm ET as I talk about these issues with Dr. Holly Ahern, Associate Professor of Microbiology at SUNY Adirondack.

Related: The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015 introduced by Sens. Blumenthal, Ayotte

http://outbreaknewstoday.com/the-lyme-and-tick-borne-disease-prevention-education-and-research-act-of-2015-introduced-by-sens-blumenthal-ayotte-62247/
[B][/B]

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KarlaL

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KarlaL
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February 02, 2016, 09:00 am

Senate should address Lyme and tick-borne disease epidemic

By former Gov. Tommy Thompson (R-Wis.)

http://thehill.com/blogs/congress-blog/healthcare/267754-senate-should-address-lyme-and-tick-borne-disease-epidemic

If you have a family member or friend who has suffered from Lyme disease, you already know the pain it can cause. Conservatively, the Centers for Disease Control and Prevention (CDC) estimates that 300,000 people contracted Lyme disease in 2013. While some people are diagnosed and treated early, effectively stopping the disease in its tracks, many others are not so lucky.

Lyme disease is caused by a bacteria transmitted when an infected tick bites a human or animal (as veterinarians know, Lyme disease is a big problem for pets as well). While anyone can contract the disease once bitten, children and the elderly are the most vulnerable.

For starters, the disease is hard to diagnose. Some patients will experience what’s commonly referred to as a “bulls-eye” rash, which makes diagnosis easier, but most patients do not, allowing the disease to take hold and spread throughout the body. Worse, many of these symptoms overlap with other common diseases, creating misdiagnoses such as fibromyalgia, rheumatoid arthritis, multiple sclerosis, Parkinson’s disease, ALS, and even Alzheimer’s disease.

For those who aren’t diagnosed quickly, the disease can be debilitating, highlighted by severe joint pain, memory loss, Bell’s palsy (facial drooping), fatigue, and depression. In some cases, the bacteria that causes Lyme disease can affect the human heart, which can be fatal.

Lyme and other tick-borne diseases are on the rise in our country. Between 1993 and 2013, the number of estimated new cases of Lyme disease rose by 340 percent, according to the CDC. With thousands of people becoming infected by the disease annually, it’s fair to say Lyme disease has become an epidemic and a significant public health risk.

In my home state of Wisconsin, the number of confirmed cases has continued to rise year after year. In 2013, the Wisconsin Department of Health Services estimated 4,000 new cases. While Lyme disease is generally associated with the Northeast part of our country, its spread across the country fits the definition of a prevalent and significant health threat. Notably, Alabama’s Department of Public Health recently declared Lyme disease endemic to seven counties.

As Lyme disease grows, so do the costs. According to a 2015 report out of the Johns Hopkins Bloomberg School of Public Health, the healthcare costs of each case averages over $3,000, adding up to a staggering price tag of over $1.3 billion nationwide. This measurement only includes direct medical costs. If calculating the costs of lost wages, lost tax revenues, and the emotional/physical toll taken on patients and their families, Lyme disease represents one of the great healthcare crises in America.

Lyme is just one of over a dozen disease-causing pathogens that can be passed to humans from ticks. Many of these other diseases, though less prevalent than Lyme, can have even more debilitating consequences, including death.

The evidence is overwhelming; something needs to be done about Lyme and other tick-borne diseases, and the time has come for the federal government to step-up its response.

As a first step, the Senate needs to pass what’s called The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015 (S. 1503). The bill, which is similar to a House bill that passed last year, has bipartisan support and is being championed by Sens. Kelly Ayotte (R-N.H.) and Richard Blumenthal (D-Conn.).

The Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015 would establish an advisory committee within the federal government that would help the secretary of Health and Human Services (HHS) coordinate the government’s response to Lyme and other tick-borne diseases, specifically:

· Help improve interagency communication and coordination

· Identify opportunities for collaboration between federal agencies and private organizations, ensuring that a broad spectrum of scientific viewpoints are represented in public health policy decisions

· Focus on developing better diagnostic tests

· Increase public awareness related to Lyme and other tick-borne diseases

For those who are rightly budget conscious, it’s important to note that this legislation does not authorize any additional federal funds, but utilizes existing HHS funding.

Congress has its share of partisan battles, but this bill isn’t one of them. I strongly encourage senators of both parties to come together to support and pass this important piece of legislation.

Thompson was governor of Wisconsin from 1987 to 2001. He served as the U.S. Secretary of Health and Human Services from 2001 to 2005 under President George W. Bush. He currently serves as an independent board member of US BIOLOGIC, which is developing a novel wildlife Lyme vaccine.

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
   

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