Petition to Federal Drug Administration
Ban vaping devices in the United States
ProblemWe need the FDA to ban Juul, e-cigarettes, and other vaping devices. These products have many hidden dangers. They are made with chemicals that can harm people. Middle School children and High School children are now following the trend of vaping. These devices are so discreet that they can vape in school and disrupt the learning environment for other children. Students are putting THC into their Juul and other vaping devices and are getting high while at school and under their parents' noses. These children do not understand the risk and schools are trying to figure out how to prevent them. Juul looks like a USB drive and students can do it in the classroom without teachers knowing because students have learned to inhale and not exhale. I have heard of lungs bursting, the battery exploding in their faces, and other harmful effects. Nicotine, THC, and the other chemicals that are in these pods affect our children as their brains are not fully developed. Other countries have banned vaping,Juul, and other devices that are similar. We need to protect the health of the public and our children.SolutionHave the FDA ban and make illegal these devices. If they are not sold and the pods with all the chemicals are not sold then children will not be able to get ahold of them.
Petition to House Energy and Commerce Committee, Subcommittee on Health
Tell the House Subcommittee on Health to make PrEP a part of preventative care
There’s a proven way to prevent new cases of HIV, it’s called PrEP. The U.S. Preventive Services Task Force announced that PrEP (aka: Truvada) should be offered by doctors as a major form of HIV prevention. But there’s a huge hurdle to getting on PrEP - the cost. Without insurance, a 30-day supply of PrEP can cost roughly $1,700. Even with insurance, the costs can be prohibitive. But the House Subcommittee on Health can do something about it, they can make PrEP a part of preventative care. This would mean patients could get PrEP for free from their insurance, no matter the cost. Tell the House to make PrEP a free and essential part of preventative care. The Task Force found that many physicians aren’t offering PrEP for HIV prevention because of the high cost. Once completed, their report will be going to the House Subcommittee on Health and could help expand existing coverage under the Affordable Care Act (ACA), but HIV prevention should go further. An estimated 15% of people with HIV don’t know they have it. In the U.S., HIV rates are actually increasing among Latino and African American men. Southern states had half of all new HIV cases in 2016. With novel preventative drugs like PrEP, countless lives could be saved. Demand the House make PrEP an essential part of preventative care. In the U.S., 1.2 million people are at high risk of contracting HIV, but only about 80,000 of them had access to PrEP in 2016. That same year, there were 40,000 new cases of HIV in the United States. If high risk people use PrEP everyday, it can reduce their chances of getting HIV from 70-90%. Lives are at stake. Tell the House Subcommittee on Health to make PrEP an essential part of preventative care. No one should lose a friend or relative to complications with HIV/AIDS. Tell the House to make PrEP free.
Petition to Jurupa Valley City Council members, Brian Berkson, Micheal Goodland, Anthony Kelly, Jr., Verne Lauritzen, Laura Roughton
Stop the Jurupa Valley Truck Stop
The town I live in has some of the worst asthma and pollution-related health issues in the country and our city will make the situation even worse if they approve a proposed truck stop. My name is Dania, and I live in Jurupa Valley, California. I attend school next to a road which sees over 800 trucks pass every hour, and our community suffers serious health effects because of it. The Mira Loma community in the city of Jurupa Valley has been fighting against the industrialization of their neighborhoods for years. A once rural-agricultural community has been overrun with warehouses and diesel trucks that pollute the air and lungs of residents and create excess traffic and increasing commute times. Join us in demanding that the Jurupa Valley City Council stop this truck stop before it does more damage to our lungs and our community. On October 24, 2018, the Jurupa Valley Planning Commission voted to approve the “Pilot Flying J Travel Center”, an 11-acre truck stop proposal located less than a mile from the local high school and Mira Loma Village, a community of 101 homes. The proposal was appealed and will now be reviewed by the Jurupa Valley City Council for a final decision. The approval of the truck stop would further increase the diesel particulate pollution in a region that is already overburdened by ozone and PM 2.5 pollution, as well as add additional vehicles to an already over-congested road. Residents and students have shared their stories of asthma, double-lung transplants, and other health issues that they believe is the effect of living next to a road that sees over 800 trucks every hour. The ability to live, work, play, and go to school in healthy, toxic-free communities is made possible by just and equitable planning decisions that prioritize community health over corporate wealth. If the truck stop is approved at the city council meeting 7pm on December 20, 2018 at the Jurupa Valley City Hall, the fate of the health of our community is sealed. It will be obvious that our elected officials do not care about the health and safety of our residents and students. Please add your name to let the Jurupa Valley City Council know that you DO NOT support the “Pilot Flying J Travel Center” proposal so close to schools and homes.
Petition to Blue Cross Blue Shield
Blue Cross Blue Shield: Cover therapy treatments for Reed
Our 4 year old, Reed, has experienced developmental delays in all areas since he was an infant. A recent brain MRI has shown some neurological abnormalities. He has received speech, physical, and occupational therapies since he was a year old. He initially received therapy services from our local Early Childhood Intervention program, but began receiving private therapy services at the age of 3. He has made steady progress with consistent therapy, but it is anticipated that Reed will continue to need therapy over the years to reach his full potential. Last year, Reed was on a BCBS PPO insurance plan through my employer that covered all of his therapies through home health. He is now on a different BCBS PPO through my husband's employer as of August 2018. From August to October of 2018, this insurance plan covered a home health agency coming to Reed's daycare for his therapy. This allowed him to receive therapy while my husband and I both worked full time in order to make enough to cover the cost. Although the therapy was "covered," we are required to pay the full cost until we meet a high deductible. BCBS has recently denied more therapy visits for Reed stating that they have a policy of only covering home health visits for children who are unable to leave their house. When the therapy company asked to see this policy in writing, BCBS has been unable to produce it. During a peer to peer review with Reed's doctor, the insurance company said they would cover the visits if the home health agency billed them as "not in the home." However, BCBS has a contract with the home health agency stating they must bill the therapy as being in the home. So BCBS asked me to tell the therapy company to do something that they have a contract with the therapy company stating that they cannot do. Just 3 months ago, they covered his visits through home health. They are now trying to force us to take Reed to an outpatient facility if we want his therapy visits to count towards our deductible. We are unable to do that without one of us significantly reducing the amount we work, and therefore, our income to be able to pay for these therapies until we meet the high deductible. I believe this is a move by BCBS to keep us from meeting our deductible so that they will not have to do their part and begin paying for services once the deducible is met. They are enacting "policies" at random and suggesting billing changes that they know the therapy company cannot do as part of a game to avoid providing coverage. Home health is not solely for children who are unable to leave their homes. I am a home health speech therapist myself and none of the 20+ children I have worked with over the past year have been confined to their homes. Various insurance companies, BCBS included, have covered services for these children so that they could receive therapy and their parents could continue to work or be available to care for other children in the home while therapy was done. Additionally, BCBS has imposed a 60 visit limit for all therapies. This means that they will only allow a few months worth of therapy to count towards our deductible. It will take 47 visits for us to meet our deductible. Then BCBS will cover 13 before we will again be responsible for the full cost. Reed needs consistent, year-round therapy for years to come. Visit limits are based on the therapy model for adults recovering from strokes and brain injuries where they receive intensive therapy over a short period of time. It is RE-habilitative. Therapy for children is habilitative. They are not recovering lost skills, but gaining them for the first time. That requires more than just a few months of therapy. The combination of denying home health and an unreasonable visit limit will bankrupt our family or force us to not be able to get him the help he needs. We are not looking for a handout but just asking BCBS to provide the health coverage we are working hard to earn and pay for. Reed has been making good progress with therapy and deserves the chance to gain the skills he needs to succeed in life. Please help us appeal to BCBS not only for Reed, but the thousands of other families being put in this position by these "policies" that insurance companies use to avoid meeting their responsibility to cover services.
Petition to Dianne Feinstein, Kamala D. Harris, Gavin Newsom, Boeing, Senator Henry Stern, Barbara Lee, Mohsen Nazemi, Julia Brownley
No more kids with cancer: clean up the Santa Susana Field Lab
When my daughter Grace Ellen was diagnosed with a very rare form of cancer, at age four, I thought that our family had the worst, most devastating luck. But after spending months in the hospital with her, we learned that she was one of over 50 children who may have been poisoned by one of the worst nuclear meltdowns in America. Sign to demand that incoming governor Gavin Newsom push the Department of Toxic Substances Control (DTSC) to completely clean the Santa Susana Field Lab and prevent any more children from getting cancer. Grace Ellen’s form of cancer was incredibly aggressive. At age four she was put on several clinical trials, had ten times the normal amount of chemotherapy, and spent two years fighting her cancer. A year and a half later her cancer came back. She’s been addicted to morphine, unable to eat or drink, and had to fight for her life in the hospital isolation floor. Her childhood was stolen from her, and it haunts me to know her cancer might have been avoidable. She, like the other 50 children, grew up within 20 miles the Santa Susana Field Lab, land which was developed in the 1940s to conduct nuclear research. In 1959 an uncontained partial meltdown of a sodium reactor caused such a devastating radiation leak that many consider it to be the worst nuclear disaster in U.S. history – and it was completely covered up for years. Our community has up to 60% higher cancer rates, 20% higher invasive breast cancer rates, we have the reports to prove it. It is the Department of Toxic Substance Control’s job to clean up this mess. They know our children are sick and dying, but they aren’t taking any meaningful action against those who own the land – Boeing, NASA and the DOE. I will protect my children even if I have to tear down mountains with my bare hands – and I am one of many parents fighting for our kids. To win this, we need our future governor to push the corrupt Department of Toxic Substances to clean up this disaster once and for all. Will you join us?
Petition to Claire McCaskill, Jill Schupp, Gary Romine, U.S. Senate, Roy Blunt, Dan Brown, Mike Cierpiot, Sandy Crawford, Mike Cunningham, S. Kiki Curls, Bill Eigel, Jason Holsman, Denny Hoskins, Jacob W Hummel, Andrew Koenig, Doug Libla, Brian Munzlinger, Jamilah Nasheed, Bob Onder, Ron Richard, Jeanie Riddle, John Joseph Rizzo, Caleb Rowden, David Cameron MP, Rob Schaaf, Dave Schatz, Scott Sifton, Wayne Wallingford, Jay Wasson, Paul Wieland, Richard C. Shelby, Doug Jones, Lisa Murkowski, Dan Sullivan, John McCain, Jeff Flake, John Boozman, Tom Cotton, DIane Feinstein, Kamala D. Harris, Michael F. Bennet, Cory Gardner, Richard Blumenthal, Chris Murphy, Thomas R. Carper, Christopher A. Coons, Bill Nelson, Marco Rubio, Johnny Isakson, David Perdue, Brian Schatz, Mazie K. Hirono, Mike Crapo, James E. Risch, Richard J. Durbin, Tammy Duckworth, Joe Donnelly, Todd Young, Chuck Grassley, Joni Ernst, Pat Roberts, Jerry Moran, Mitch McConnell, Rand Paul, Bill Cassidy, John F. Kennedy, Susan M. Collins, Angus S. King Jr., Benjamin L. Cardin, Chris Van Hollen, Elizabeth Warren, Ed Markey, Debbie Stabenow, Gary C. Peters, Amy Klobuchar, Tina Smith, Roger F. Wicker, Cindy Hyde-Smith, Jon Tester, Steve Daines, Deb Fischer, Benjamin Sasse, Dean Heller, Catherine Cortez Masto, Jeanne Shaheen, Margaret Wood Hassan, Robert Menendez, Cory A. Booker, Tom Udall, Martin Heinrich, Charles E. Schumer, Kirsten E. Gillibrand, Richard Burr, Thom Tillis, John Hoeven, Heidi Heitkamp, Sherrod Brown, Rob Portman, James Inhofe, Ron Wyden, Jeff Merkley, Robert Casey, Pat Toomey, Jack Reed, Sheldon whitehouse, Lindsey Graham, Tim Scott, John Thune, Mike Rounds, Lamar Alexander, Bob Corker, John Cornyn, Ted Cruz, Orrin G. Hatch, Mike Lee, Patrick J. Leahy, Bernie Sanders, Mark Warner, Tim Kaine, Patty Murray, Maria Cantwell, Joe Manchin III, Shelley Moore Capito, Ron Johnson, Tammy Baldwin, Michael B. Enzi, John Barrasso, President of the United States, Maria Chappelle-Nadal, Ann Wagner
Stop Forcing Mail Order Pharmacy as Only Choice of Coverage & Monitor Package Temperature
My son, received a life saving liver transplant at the age of 2. His life depends on the potency and effectiveness of chemotherapy/immune suppression medications to prevent his body's immune system from fighting off his transplanted liver. In the past mail order delivered his liquid oral medications in nothing but a plastic envelope on a 102 degree day on a hot enclosed not temperature controlled UPS truck. Shortly after, he went into liver rejection which could have resulted in complete liver failure or death. I speculated that the medication could have been too weak after the delivery of medications in high heat. I vowed to never again risk his life with mail order pharmacy. Recently, we were mandated/forced to only use mail order pharmacy in order to receive coverage for his life-saving medications. Hesitant, I begged for an ice pack. The package arrived in only a bag on an about 90 degree day again without an ice pack. The hot non-temperature controlled enclosed delivery truck can reach temperatures up to 170 degrees. His labs elevated again afterward. My son wants to know, "Why would they do that?" I contacted the manufacturer, who does all of the testings for my son drugs who stated that both of my son's medications should be discarded and considered less potent once stored above 86 degrees as higher temperatures and freezing could result in lower potency. I also found out that liquid medication is the most harmed by the mishandling of medications outside of the manufactures temperature storage guidelines. I contacted the mail order pharmacy who refused to replace or take back the medication. They said the law & USP Pharmacopoeia allows them to ship up to 104 degrees, although the manufacturer states it is not proven safe at these temperatures. However, I have received communication from USP Pharmacopoeia who writes the guidelines for storage and they also said that the mail order pharmacy should follow the manufacturer's guidelines of 59-86 degrees for storage. I contacted the FDA, who states that the mail order pharmacy should be using the manufacturer's guidelines that have been proven safe.. However, since the mail order pharmacies are regulated loosely by the State Board of Pharmacy, not the FDA there was nothing that the FDA could do. Since starting this petition, I connected with another petitioner for air conditioning of the back of UPS trucks as the trucks are not temperature controlled. Her husband went into renal failure, because the UPS trucks are hot and enclosed and temperatures reach up to 170 degrees. It's like walking into a low temp oven. When the temperatures of the outside are colder than your freezer, I'm not sure how cold the trucks are but I'm certain mailboxes and doorsteps can get in negative temperatures. I made over 30 calls to the insurance company begging for them to please let us pick my son's medications up at the local pharmacy at which they are filled. My son's physician wrote a note/appeal as his transplant team has stated that they have tried to voice their concerns about this issue with their pediatric/child patients and no one is listening! The insurance company still denied the doctor's appeal for us to pick up my son's medications in the safest way. It was not until the Media became evolved that the insurance company budged. I felt helpless and have united with many other pharmacists, physicians, patients, mothers and fathers, and caregivers who feel the same way. Helpless. Mail order of prescription drugs should be a choice not the only option of coverage. Mandatory mail order programs from all plan types (INCLUDING the plans that are regulated by ERISA) needs to cease until mail order pharmacies are forced to store and monitor medications during their deliveries at the temperatures tested and proven safe by the manufacturer. I would never put my son's medications in a hot non-temperature controlled environment, and shouldn't be forced to only use this option in order to get coverage for his life-saving medications. Mail order pharmacies may appear to save money, but when my son ended up in the hospital after taking medications that could have been compromised by having lower potency, the cost of the rejection was thousands of dollars. If his liver would have fully failed, the cost of his liver transplant for just 5 days (he was in the hospital for 5 weeks) was over $1,000,000. The lax regulation and oversight may save money on prescription drug plans but may come at an increased cost to the health plan itself. Also, keep in mind the endless waste of medications that automatically are sent regardless of whether or not patients need them. Also, people with chronic, complex conditions, should always have the option of face to face interaction with a pharmacist who knows their complex needs and medical history. The pharmacist and patient relationship is crucial to the successful outcome of the patient's overall health. Taking this away is harmful to patients and be more costly to our already stressed healthcare system. Since starting the petition, many have also stated that they experience life-threatening delays in receiving their prescriptions. Medications get lost, stolen, people are going days without medications that their life depends on. Only allowing mail-order pharmacy for coverage is unethical and irresponsible. Another important fact. Mandatory mail order programs are discriminatory. It is estimated that 40% of our homeless are disabled. How is mandatory mail order fair and working for them as they may not have an address and not even know where they will be from day to day? It is crucial that All plans should include true fair coverage and reimbursements of our pharmacist. Please help! We need legislation to protect all patients by ending the mandatory mail order pharmacy coverage in every type of plan offered in the nation. We need your help to make mandatory mail order an option, not a mandate. YOUR URGENT SUPPORT WILL SAVE LIVES! THANK YOU!!
Petition to U.S. House of Representatives, U.S. Senate, New Hampshire State House, New Hampshire State Senate, New Hampshire Governor, The US Senate, Beth Bell, MD, Sylvia Burwell, Dr. Tom Frieden, Rima Khabbaz, Chris smith, Collin Peterson, Alex Azar, II
Calling for a Congressional investigation of the CDC, IDSA and ALDF
We are experiencing a health crisis here in New Hampshire and across the country with the growing epidemic of Lyme disease. A number of legislators have personally been affected and have introduced legislation to address this problem. Here are just a few recent examples. Massachusetts Representative David Linsky: “The occurrence of Lyme disease has reached near epidemic proportions in Massachusetts. Virtually every family in Massachusetts has been affected by Lyme disease in some way. Lyme disease is a public health crisis in the Commonwealth.” Read more… Connecticut, Rhode Island, New York Senator Richard Blumenthal: "Today for me culminates more than a decade of work and probably a decade more, because I've seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease” Read more…. New Jersey, Pennsylvania Congressman Chris Smith: "It seems everywhere I go, someone comes up to me to talk about how Lyme disease has severely impacted their lives or someone they know," Read more… Virginia Virginia Governor’s Task Force Chair Michael P Farris, Esq: "Doctors here in Virginia are committing malpractice by saying the ELISA test is sufficient." Read more… Texas Sen. Harris says he was severely affected by the disease, but “got a lucky break.” His doctor, constrained by a disciplinary board that limited antibiotic use for tick-borne illness to 1 month or less, arranged for 17 physicians to take turns writing prescriptions for Sen. Harris’s treatment. Read more… Two HoustonTexas physicians tested their chronically ill patients for Lyme disease via CDC Western blot criteria finding all patients positive for the infection in a state where the prevalence of Lyme infected ticks is only about 1-2%. “No history of bull’s-eye rash or illness following tick bite was reported by these patients.” The CDC defines “Lyme disease” exclusively as a zoonotic illness. Congenital and gestational transfer cases have been disregarded for reasons not evident to us”. Read more… Congenital Transmission of Lyme: 28 Peer-Reviewed Studies After spending four years on this subject the following statement from a physician on the front lines treating the late stage Lyme epidemic for a quarter century rings true: “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.” We have studies proving persistent infection after antibiotic treatment for mice, dogs, ponies, monkeys, cows, iris biopsy, and ligamentous tissue but if you perform a simple Yahoo search for the following statement, “There is no convincing scientific evidence that chronic Lyme exists” you will find the top search results are connected to “elements of academic medicine” involved in the denial of the late stage Lyme epidemic. Persistent Lyme infection: 273 Peer-Reviewed Studies Circular reasoning: "Suppress all evidence and then proclaim there is no evidence" “One way to stop an epidemic is to redefine it by narrowing the disease's diagnostic criteria so tightly that it's hard for any chronically ill Lyme patient to fit the profile and obtain insurance reimbursement.” Read more… The following CDC letter (Dec 1996) addressed to former Senator Alfonse D’Amato promising to inform the medical community that the CDC’s Lyme case definition was created for reporting purposes only and not intended for clinical diagnosis is yet another failure on the part of the CDC to follow up on their responsibilities. Countless numbers of Lyme patients have been denied treatment and insurance reimbursement as a result of the restrictive case definition. Read more… Jan 2004 testimony from Paul Mead, M.D., M.P.H. Medical Epidemiologist from the CDC’s Division of Vector-Borne Infectious Diseases: “No surveillance case definition is 100% accurate. There will always be some patients with Lyme disease whose illness does not meet the national surveillance case definition.” Read more… Seronegativity in Lyme borreliosis: 103 Peer-Reviewed Studies There has been a combined effort on the part of the CDC, IDSA and ALDF to use the media for propagating the Lyme disease disinformation campaign following Chomsky's propaganda model. They have used Medscape, Family Practice News, The New England Journal of Medicine, The Lancet Infectious Diseases and now The American Heart Association to spread the disinformation. This deliberate campaign is aimed at purposely confusing our medical community to keep case numbers artificially low by omitting the late stage of the disease entirely as there is absolutely no medical training whatsoever for the later stages of this disease (Willful Ignorance) so patients are often ping ponged though the medical community for years or decades before obtaining a late stage Lyme diagnosis. Nine Steps to Deny an Epidemic on a National Level 101 Letter to the editor of Clinical Infectious Diseases questioning the validity of Dr Alan Steere’s research. Read more…. Letter to the editor of Clinical Infectious Diseases questioning the validity of Dr Gary Wormser’s research. Read more…. Dr Alan MacDonald’s letter to the editor of Clinical Infectious Diseases questioning the reality of the abstract by Lantos, Auwaerter, and Wormser: Read more….. Agenda-driven bias: “People with these types of agendas may be more likely to abuse meta-analysis due to personal bias” NEJM editor: “No longer possible to believe much of clinical research published” When “evidence based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science? Email message sent to the editors of the publications listed above announcing this petition. Read more… It’s all about the VACCINE It has become blatantly obvious that the CDC will go to great lengths to insure that Lyme disease remains within its narrow definition in order to fit the vaccine model. Chronic Lyme does not fit any vaccine model. The CDC has long known about the virulence and persistence of this spirochete focusing on a vaccine as the cure-all to this world wide epidemic. The late stage/chronic Lyme community has become collateral damage for a vaccine market in the course of a government sponsored initiative as Baxter’s phase III clinical trials are underway. The CDC has aligned itself with institutions/researchers with a bias against persistent infection and has misused its authority by inappropriately allotting government funds to Mass General Hospital (Dr Alan Steere) and New York Medical College (Dr Gary Wormser) as identified in the following communications. Read more…. The Principle Investigators of the two previous Lyme vaccines: Allen C. Steere for SmithKlineBeecham's LymeRix and Gary Wormser for Connaught's vaccine (which never made it to market) have conceptualized a disease that would enable vaccine development. The one-size-fits-all Lyme treatment guideline (lead author: Gary Wormser) matches the conceptualized disease. A preventive vaccine for Lyme disease would not satisfy the FDA if a chronic persistent infection and seronegative disease exist. Post-treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure. Seronegativity in Lyme borreliosis: 103 Peer-Reviewed Studies It remains questionable that a Lyme disease vaccine is practical for an infection that produces a lack of immunological memory (unlike Measles, Mumps etc.) so the Wormser study fabricating a six year strain-specific immunity makes perfect sense for the marketing/acceptance of such vaccine as identified in a letter to Editor in Chief, Ferric C. Fang, M.D. Infection and Immunity. Read more… The producers of the documentary, “Under Our Skin,” submitted a Freedom of Information Act (FOIA) request to investigate possible conflicts-of-interest of three Centers for Disease Control (CDC) employees who control public health policy for Lyme disease. (Barbara Johnson, Paul Mead and David Dennis) That request was finally fulfilled (May 2012) from the Department of Health and Human Services (five years later!). The information received is highly redacted with approximately half the information cut. What does the CDC know about Lyme disease that requires hiding from the public? The Centers for Disease Control has betrayed the public trust. For more on the FOIA see Poughkeepsie Journal article # 1 article # 2 By Mary Beth Pfeiffer Mary Beth Pfeiffer of the Poughkeepsie Journal highlighted the worst conflicts of interests between federal officials and a core group of researchers receiving government grants in the “ties that bind” page. Read more… Who is responsible for the “highly pathogenic” clone of the Lyme disease bacteria, (Borrelia burgdorferi) found in Europe and North America as reported by the journal Emerging Infectious Diseases? Read more… The following list establishes who knew what and when identifying their contribution to the disinformation campaign aimed at denying persistent Borrelia infection. When subpoenas are issued CDC officials cannot claim conflicts of scheduling issues and must attend to testify under oath regarding the mishandling of Lyme disease. Congressional Investigation Subpoena List 1. CDC Officials DAVID DENNIS (1) (2) (3), C. Ben Beard, Barbara Johnson (1), Paul Mead (1), Joseph Breen Former NIH Lyme Program Officers Phillip Baker, Edward McSweegan (1)(2) 2. IDSA Lyme Treatment Guideline Authors (1) (2) (3) (4) Gary P Wormser (1), Raymond J. Dattwyler (1), Eugene D. Shapiro, John J Halperin (1), Allen C. Steere (1), Mark S Klempner (1), Peter J. Krause, Johan S. Bakken, Franc Strle, Gerold Stanek, Linda Bockenstedt (1), Durland Fish (1) (2), J. Stephen Dumler, Robert B. Nadelman Academic Medicine Paul Auwaerter, Arthur Weinstein (1) 3. The American Lyme Disease Foundation Phillip Baker, (1) (2) Executive Director Please call your legislator and respectfully urge immediate action from the U.S. Senate and U.S. House of Representatives to fully investigate the facts surrounding the failures of leadership and management deficiencies by requesting a Congressional investigation of the CDC, IDSA and ALDF (Find your Senator) (Find your Representative) Yolanda Foster on Lyme disease, one of the "Real Housewives of Beverly Hills” Dr Alan MacDonald on Alzheimer's and Lyme disease, “The Biology of Lyme Disease: An Expert's Perspective” Remarks: World Wide Lyme Rally & Protest Kenneth B. Liegner, M.D. Lyme disease testing flaws and conflicts of interests The Barry Marshall affect on chronic disease Inconvenient truths Bullying of Lyme patients List of abbreviations CDC: Centers for Disease ControlIDSA: Infectious Disease Society of AmericaALDF: American Lyme Disease Foundation Carl TuttleHudson, NH03051 Website: New Hampshire Lyme Misdiagnosis Letter to the Editor, The Lancet Infectious Diseases Published May 2012 The Tuttle family was featured on New Hampshire Chronicle’s “Living with Lyme” with the program archived on their site in six small segments for viewing on the computer Part 1, Part 2, Part 3, Part 4, Part 5, Part 6
Petition to Scott Gottlieb MD, Jeff Shuren, Sybill Storz, Managing Director, Hal Lawrence, William Maisel MD
Health Alert: Many Women Have Died Unnecessarily Because Dangerous Cancers of the Uterus and Ovaries Are Being Spread using MORCELLATORS. Stop MORCELLATION in Minimally Invasive Gynecological Surgery.
Friends of the Public, Many women have been harmed and have died prematurely or unnecessarily because of a routine but avoidable gynecological practice known as MORCELLATION. This world-wide practice has devastated many families for well over two decades now. More than 600,000 hysterectomies are done in the US every year. By the age of 70, one out of every three American women will have had a hysterectomy. About 90% of these surgeries are done for what is presumed to be a benign condition called fibroids. More and more of these surgeries are done with minimally invasive techniques. Usually, to get the uterus out of the body using the "minimally invasive" technique, it is cut into small pieces with a machine called a morcellator. However, a devastating problem happens if in fact the woman did NOT have fibroids – but if she actually had cancer. Unfortunately, the tests that are done before a hysterectomy do not identify these cancers well. Many gynecologists don't even bother getting any tests. In fact, morcellating cancer spreads the cancer inside the woman’s body. This is called ‘up staging’ the cancer. It is important to understand: 1) The average life span following accidental morcellation of sarcoma is only 24-36 months. 2) Only 15% of woman who have leiomyosarcoma (LMS) that has spread (stage 4) will be alive after 5 years. 3) Women with sarcoma who are morcellated are about 4 times more likely to die from sarcoma than if they had not been morcellated. This is an avoidable disaster. This problem has been recognized for more than two decades. A review of the literature, by the Food and Drug Administration, revealed that 1 in 350 women who go for fibroid surgery actually have sarcoma. This means that everyday 2-5 women in the US – and more around the world are susceptible to having a deadly cancer spread because of morcellation. This catastrophic problem has happened in my family and we are fighting to stop this dangerous activity called morcellation. A chance of 1 in 350 for such a devastating outcome is much too high to accept. Women should be told the truth and the practice should stop. Please help us bring an end to spreading cancer with morcellation. This is a totally AVOIDABLE practice. People need to understand their options, which include hysterectomy through a mini-lapartomy incision or trans-vaginally – but – up until recently, most women never heard anything about morcellation or about the possibility of cancer upstaging. And, if they do, this risk is down-played by most minimally invasive gynecologists. We can tell you based on our experience, when cancers are spread by morcellation, the outcomes can be devastating - because the cancer is upstaged. We need your help. Please sign our petition so we can get the word out. We want the American College of Obstetricians and Gynecologists and the American Board of Obstetrics and Gynecology to change this "standard of care" by ending the needless waste of life caused by spreading cancer with morcellation. For more information and original references see: http://journals.lww.com/oncology-times/blog/onlinefirst/pages/post.aspx?PostID=188 ) (also see:http://www.ncbi.nlm.nih.gov/pubmed/23189178) (also see:http://www.ncbi.nlm.nih.gov/pubmed/21565389). The attached video below shows an example of morcellation https://www.youtube.com/watch?v=nPkKw0j-aXE The following companies manufacture and distribute uterine morcellator devices: 1) ETHICON: Gynecare morcellator 2) Storz: Rotocut Morcellator 3) Richard Wolf Medical Instrumentation Company 4) LiNA: LiNA Xcise Cordless Laparoscopic Morcellator 5) Blue Endo MOREsolution Tissue Morcellator 6) Pneumoliner Power Morcellation System by Olympus Corporation. Intuitive Surgical's Da Vinci Robot deserves special mention, as the frequency of robotic hysterectomies performed by minimally invasive gynecologists is currently on the rise across the United States. Note that Intuitive Surgical builds and markets the DaVinci robot, which is not itself a "morcellator". However, use of the DaVinci robot almost invariably appears to require that the uterus be minced up, or morcellated, into smaller pieces inside the woman's belly cavity in order to extract from the abdomen. A clear example is shown in the following YouTube video of DaVinci being used to perform a robotic hysterectomy and manually morcellating the uterus using the endo-wrist component of the robot (morcellation is being performed at minute 5:30 of the video). https://www.youtube.com/watch?v=f6luiX6UQmg Without morcellation using equipment manufactured by Intuitive Surgical, robotic hysterectomies would, likely, not be possible using the DaVinci Robot. It is noteworthy that the DaVinci robot does not appear to have a readily available warning label advising against its use to morcellate tumors with malignant potential inside the body. The company's Chief Medical Advisor, Dr. Myriam Curet, a surgeon herself, has been informed and advised of this severe hazard in the use of DaVinci for robotic hysterectomy and the absence of a readily available warning label.