Topic

Health and Safety

1,465 petitions

Update posted 7 hours ago

Petition to U.S. Senate, Dan Brown, Kathy J. Byron, Lee Ware, Mike Cunningham, Timothy Hugo, Bill Eigel, Jason Holsman, Daniel Marshall, III, Jacob W Hummel, Robert B. Bell, Israel D. O'Quinn, Jamilah Nasheed, Bob Onder, Ron Richard, David E. Yancey, John Joseph Rizzo, Caleb Rowden, Margaret B. Ransone, Dave Schatz, Scott Sifton, Wayne Wallingford, Michael J. Webert, Paul Wieland, Tony O. Wilt, Christopher T. Head, Jeion A. Ward, Mark L. Keam, Eileen Filler-Corn, Kaye Kory, Joseph C. Lindsey, Lamont Bagby, David J. Toscano, Steve E. Heretick, Michael P. Mullin, Jeffrey M. Bourne, President of the United States, Maria Chappelle-Nadal, U.S. House of Representatives

Stop Forcing Mail-Order Pharmacy as the Only Option of Coverage

Patients' lives depend on choice. **Since starting the petition, I have realized that there are many issues other than temperatures with forced mail-order pharmacy.  Mail-order pharmacy is very loosely regulated. There are life-threatening delays, lack of face-to-face relationship with pharmacists for people with chronic conditions, and rapid closures of our independent pharmacies; although, a recent study showed people prefer independent pharmacy (2018, Gill).    *************Our Story************* Our son, received a life-saving liver transplant at the age of 2 from a 3-year-old little girl. His life depends on the potency and effectiveness of chemotherapy/immune suppression medications every 12 hours 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.  The package arrived in only a bag on a hot day 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 performs the testing 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 both result in lower potency. 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 guidelines for storage, and they also said that the mail order pharmacy should follow the manufacturer's guidelines of 59-86 degrees for storage. Again, the trucks reach up to 170 degrees which is much hotter than 104.  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.  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.  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 are 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.   Only allowing mail-order pharmacy for coverage is unethical and irresponsible. I share stories on my social media sites every day of patients who are suffering from lack of choice.  We need your help to make mandatory mail-order an option, not a mandate.  YOUR URGENT SUPPORT WILL SAVE LIVES! THANK YOU!! WE APPRECIATE ALL OF THE SUPPORTERS, CAREGIVERS, & PATIENTS.  Thank you,  Loretta Boesing, Founder of Unite for Safe Medications You may make a tax-deductible contribution to support our advocacy here Email: loretta@uniteforsafemeds.com Facebook Page: Issues with Mail Order Pharmacy @justamomwholovesherson Twitter: @BoesingLoretta The greatest way that you can help is by sharing this petition & gathering 2-3 people in your community who are having issues and speak to your legislatures.                  Reference: Gill, Lisa L. “Consumers Still Prefer Independent Pharmacies, CR's Ratings Show.” Product Reviews and Ratings - Consumer Reports, 7 Dec. 2018, www.consumerreports.org/pharmacies/consumers-still-prefer-independent-pharmacies-consumer-reports-ratings-show/

Loretta Boesing
163,645 supporters
Update posted 1 day ago

Petition to Francis Collins, Jenni Glenn Gingery, Sean Tipton, Mary Green, Dr. Anuja Dokras, Dr. Barbara Levy, Jeremy Lazarus, Kevin Griffis, Polly Webster, Yvonne Lau, Richard Ricciardi

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
35,348 supporters
Update posted 2 days 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, 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

Carl Tuttle
84,199 supporters