Topic

Health and Safety

1,090 petitions

Update posted 11 hours ago

Petition to Vertex CEO Jeffrey M. Leiden

Stop price gouging our charity-funded drugs

My life changed for the better the second my son Eli entered my world. But shortly after his birth, we learned that Eli had cystic fibrosis, a fatal genetic lung disease. Without the right drugs, his life could be cut drastically short. So when I found out Vertex Pharmaceuticals had finally developed two Cystic Fibrosis drugs that could help extend his life, I was thrilled. But then I heard their price tags -- the cheapest one costs $286,000 a year. I was dumbstruck. How could my family -- how could any family, for that matter -- ever afford them? What’s worse -- supporters of the Cystic Fibrosis Foundation (CFF), like myself, have donated more than $75 million dollars to Vertex to fund its development research. We thought it was a partnership. We thought we were working toward the same goal -- to find a cure for a deadly disease. But I, like others who had been praying for these types of drugs, now feel betrayed. I am asking Vertex CEO Jeffrey Leiden to reconsider these unconscionable prices for drugs literally developed on the backs of the patients they claim to want to help. Vertex would not have discovered these drugs if not for the help of the CFF and others who cared about finding a cure. But now they have turned around and decided to charge more than the cost of a house for just one year’s prescription of this potentially life-saving medication. I am not the only one crying foul. In fact, a group of prominent cystic fibrosis doctors are urging Vertex to stop its “egregious” pricing. These drugs have the potential to treat tens of thousands of people, but they are priced for millionaires, people like Vertex CEO Jeffrey Leiden who earned almost $46 million dollars last year.   We are grateful to Vertex for creating invaluable medicine that will help our loved ones live longer, more fulfilling lives. But if we cannot afford it, it's as if it doesn’t exist at all. These prices strain taxpayers and the healthcare system, keep drugs completely out of the hands of those suffering from CF in developing nations and hold the potential to bankrupt families. It’s time for Vertex to switch to common sense pricing so that we can all have a chance at a healthy life. Please consider signing my petition on behalf of my son, Eli, and the up to 100,000 people around the world who share his lethal illness. And please share and urge your friends to sign through social media. Thank you, Juliana KeepingJournalist, blogger and momwww.hithisiseli.com@hithisiseli

Juliana K
131,199 supporters
Update posted 14 hours ago

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

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

Carl Tuttle
60,552 supporters
Update posted 2 days ago

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.

Hooman Noorchashm
94,025 supporters
Update posted 2 days ago

Petition to John Burlow (Nationa Institues of Health), Jenni Glenn Gingery, Sean Tipton, Mary Green, Dr. Anuja Dokras, Dr. Barbara Levy, Jeremy Lazarus, Kevin Griffis, Polly Webster, Louis DePaolo

Recognize #PCOS Polycystic Ovary Syndrome as a significant health concern demanding national attention and government support.

Often unrecognized PCOS (Polycystic Ovary Syndrome) can cause many physical and emotional symptoms and for the up to 10% -20% of women and girls with Polycystic Ovary Syndrome Worldwide, it is estimated less than half know what it is or that they have it. Many women with PCOS, have gone years without the proper diagnosis and have silently suffered not knowing what was truly wrong. Even in today’s medically advanced era, women from around the country are experiencing the same lack of response from a medical community with little understanding of PCOS, except in cases when the infertility aspect are addressed. As a result, single women, adolescents, LGBT, older women and those not trying to get pregnant have little chance of being diagnosed!!! PCOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cancer, cardiovascular disease, stroke and kidney problems if left undiagnosed or untreated. This means PCOS contributes to some of the leading causes of death and disability in women today. So why does all of this this matter? PCOS is the leading cause of female infertility in women of reproductive age PCOS is the most common endocrine disorder in women PCOS affects an estimated 14 milluon reproductive-age women in the U.S. Over 50% of PCOS patients are obese 50% of PCOS patients have diabetes by age 40 Approximately 34% of women with #PCOS have #depression and 45% have anxiety. PCOS patients are at higher risk to develop high blood pressure, lipid disorders and coronary artery disease As many as 40% of PCOS patients as young as age 30-45 may have coronary calcification (a warning of heart attack risk) To put this in to further perspective... PCOS affects about 14 million women in the USA. That's more than the number of people diagnosed with Breast Cancer, Rheumatoid Arthritis, Multiple Sclerosis and Lupus combined!" - Louise Chang, MD Therefore, PCOS leaders, government officials, organizaions and advocates are charged with identifying strategies for achieving substantial improvement in the quality of health care and education for all patients living with the syndrome.  PCOS patients can not and should not simply be dismissed as a gynecological or infertility problem! With more than half of the women with PCOS predestined to have prediabetes or type 2 diabetes before the age of 40,  and increased risks for heart disease, stroke and endometrial cancer, finding ways to diagnose, screen and educate on the connection between thesee diseases to PCOS is imperative! Without the proper education and awareness of these connected disorders and the seriousness of PCOS as a metabolic endocrine disorder, these epidemics will continue to rise. The NIH needs to allocate more than 0.1% of funding to the approximately 30 million women affected in The United States and needs to engage and direct federal agencies to support more research, better physician education and better tools and resources for women and girls with the syndrome to live healthier lives with healthier outcomes!

Ashley Levinson
15,890 supporters