Topic

Health and Safety

2,696 petitions

Update posted 19 hours ago

Petition to Barbara Newhouse, All Regional Chapters

Tell ALS Association: Improve home care for ALS patients immediately

ALS patients desperately need the ALS Association to ACT IMMEDIATELY to address and correct home care issues.  There is miscommunication, as well as a knowledge deficit, of the home health services options available through insurance programs, including Medicare.  There is also a great disparity between the home care coverage allowed by Medicaid as compared to Medicare.  As a result, we are being forced into unnecessary and extreme circumstances, including:  premature placement in skilled nursing facilities; family deterioration and collapse as a product of the immense strain placed upon it; bankruptcy, and, early death.  The taxpayers are then unjustly burdened with the resolution of debt, increased health care costs from unnecessary skilled nursing facilities placements and increased utilization of government programs. The National ALS Advocacy Day & Public Policy Conference 2016 will be held in Washington D.C. on May 8-10, 2016.  Barbara Newhouse, President & CEO of the ALS Association, MUST MAKE HOME CARE FOR ALS PATIENTS THE #1 PRIORITY TO BE ADDRESSED.  Issues which must be resolved in 2016 include: Lobby Medicare and Congress to modify guidelines and regulations for home health services, including, but not limited to: Increase home health services coverage and hours per week allowed to equaling or being greater than those provided for by Medicaid. Add as an independent, sole qualifying factor for home health services the loss of use and mobility of upper and/or lower extremities. Increase the duration of home health services re-certification requirements from 60 day intervals to 180 day intervals. Ensure the process to receive home health services benefits is simple, streamlined and guarantees consistent and dependable access to the maximum allowable hours per week in each of the six disciplines*. Improve the ALS Association’s quality and effectiveness in serving the ALS community’s home care issues by implementing the following: Provide prompt, in-person information about ALS, as well as guidance on how the ALS Association will help manage the complexities of navigating 'the systems'. Require staff of all ALS clinics/centers, patient services and chapter support persons to be competent in Medicare home health services.  This includes developing and disseminating in-depth knowledge of the “Medicare Benefit Policy Manual, Chapter 7 - Home Health Services”.  To ensure compliance and effectiveness, the ALS Association must teach and train, monitor, as well as produce and publish a quarterly ALS community survey.  Monitoring must ensure the consistency and quality of patient services amongst ALL ALS clinics/centers. Work closely with Medicare-certified home health agencies, and hold each agency accountable for providing ALS patients with the maximum benefit allowed in each of the six disciplines* of home health services, provided eligibility criteria has been met. Restrict interactions, relationships and referrals with home health agencies to only Medicare-certified home health agencies who offer all six disciplines* to patients. As a Gold Partner with the ALS Association, Bayada must become the standard and example of excellence in services for other Medicare-certified home health agencies to emulate.  All six disciplines* must be available through their organizations, and they must also be in compliance with Medicare guidelines and regulations. Implement, and publicly report on, online patient surveys.  Surveys should be simple and include a feedback option.  This will allow ongoing monitoring of how ALS clinics/centers, patient services and chapter support persons are performing.  Areas of interest to target in the survey should include: quality of information sharing of Medicare-certified home health services options, services accessibility, as well as Medicare-certified home health agencies performance in all six disciplines*.  Update the alsa.org website to reflect current and relevant information, particularly the list of active ALS clinics/centers. * The six disciplines of home health services are: skilled nursing, home health aide, physical therapy, speech-language pathology, occupational therapy and medical social services. Additional information of note: ALS patients and their families are currently being drastically underserved by ALS clinics/centers, patient support services and ALS chapter-sponsored meetings.  Random, nationwide ALS patient experiences with ALS clinics/centers, patient services and chapter support for patients and families demonstrates the lack of forthcoming information and assistance in identifying options in home health services.   (Skilled home health services play a critical role in maintaining, slowing and preventing damage to major organs and body functions caused by immobility.)  There also is a lack of knowledge and understanding of Medicare home health services which can be utilized to meet patient needs during the course of disease progression.   Current miscommunication and conflict issues encountered include: Patients are either not told or are given discouraging information as to Medicare home health services options. Patients are told Medicare home health services are for short-term, rehabilitative purposes only. Patients are not provided information about Medicare home health services certification and re-certification details.  Home health agencies are invited to support meetings to market their private pay services. Support meetings, and invited home health agencies, fail to advise patients of Medicare home health services and how patients can benefit from them.   

Catherine Scott
11,466 supporters
Update posted 1 day ago

Petition to United States Department of Agriculture (USDA), United States Department of Agriculture (USDA), Medical Doctors, President of the United States, Barack Obama, Congressman, IAC/InterActiveCorp, U.S. Senate, U.S Congress, Congressional hearing, St. Jude Medical, American Heart Association

Proper medical care

What does Interstitial Cystitis (IC) feel like? A million paper cuts with lemon juice and salt poured on top. A dry catheter insert. A popping rubber band. A bowling ball on your bladder. Acid on open wounds. The intense need to pee as if you've held it for a day; every few minutes. Burning acid flowing out as you urinate. Sore stomach muscles. ALL. THE. TIME. Fear of going anywhere unfamiliar because you dont know where or how easily accessible a bathroom is. BEING DENIED PAIN RELIEF MEASURES because doctors dont believe how much IC hurts. Going to doctors who dont believe it exists. Going to doctors who won't treat it. Going to doctors who know nothing about it. Being given conflicting information and misinformation from every health care provider you see. Being told repeatedly by general physicians to see a psychiatrist because they dont believe in IC. Being ignored when you try to explain how much you hurt. How tired you are from never fully sleeping. You hurt even in your sleep. Its a constant tormentor. One who never leaves. That is my constant reality.The constant reality of hundreds of thousands of women, men and children. We hurt. We exist. We deserve proper care. A. Pain relievers HAVE to be made available to EVERY (IC) patient. B. Any procedure must be performed with at minimum a local anesthetic. C. STOP the abuse of (IC) patients at the hands of ignorant or jaded doctors. D. Place (IC) on the medical marijauna list in EVERY state. E. Follow your Hippocratic oath and stop hurting us by denying pain management. F. Listen to your patient. If we say we pee 60-100-150x a day, its because we DO!!!

Naomi Allison-Williams
1,220 supporters
Update posted 2 days ago

Petition to Loretta Sanchez, Cory Booker, Robert Menendez, Jerry Brown, Barbara Boxer, Loretta Weinberg

Implement minimum federal standards for worker’s comp.

In 1998, a file cabinet fell on me at my workplace, seriously injuring my back, knees and arms. I diligently followed my company’s worker’s compensation plan, going from doctor to doctor, waiting on diagnoses for months on end. But by the time actual treatment started, my spine was so bad, I had to have major invasive surgery and was left permanently disabled. And that was only the beginning of my struggle. I was not receiving enough compensation to cover my medications, and I was in major debt. I fought the Worker’s Compensation Board for sufficient coverage for 11 years, until they abruptly closed my case, without any valid reason, in 2009. I now receive nothing from them, and all of my appeals have been met with denials. Worker’s compensation came about as a bargain between business and workers -- we gave up our right to sue our employers in exchange for the promise of protection if we were injured on the job. I now live in poverty. I can’t afford to buy the medications I need, and have trouble putting food on my table. What a great bargain. I have since learned that hundreds of thousands of workers around the country are enduring the same hardship as me. States have stripped workers’ compensation down to nearly nothing in recent years, and people are suffering for it. Please join me in demanding that the federal government step in and implement minimum federal standards for worker’s comp, so that workers can be a respected part of the bargain again. 33 states have cut worker’s comp in the last decade, some so drastically that they virtually guarantee injured workers will plummet into poverty. Workers often battle insurance companies for years to get the surgeries and prescriptions they need. It’s a story I know too well. And, amazingly, the U.S. Labor Department flat-out stopped keeping track of states’ compliance with federal recommendations in 2004. It seems the workers have been forgotten. So where do we go for relief when our worker’s comp falls short? We have no choice but to turn to Social Security Disability Insurance, Medicare and Medicaid for lost wages and medical costs. This means that it’s American taxpayers, rather than worker’s comp insurers, who shell out tens of billions of dollars a year to make up for the cuts. Nobody wins in this. States are clearly not looking out for workers, so we must demand that the federal government do so. I don’t want anyone else to experience my torment. Please join me in calling on Congress to implement minimum federal standards for worker’s comp.

Minerva Rosario
5,784 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

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
35,399 supporters