Access to Healthcare
Petition to U.S. House of Representatives, U.S. Senate, Chuck Grassley
Pass the CARERS Act and protect medical marijuana patients
My six-year-old daughter Morgan suffers from Dravet Syndrome, a rare form of epilepsy that causes frequent and dangerous seizures. We’ve tried everything to help her. She’s taken more than 10 different anti-epilepsy medications but at best, she's gone only four weeks without a seizure. Based on our own research, advice from our doctors, and what we’ve heard from families living in other states, we would like Morgan to try cannabidiol oil -- a form of medical marijuana. For children with similar illnesses in other parts of the country, the results using medical marijuana have been life changing. Medical marijuana comes in many different preparations, and is prescribed accordingly to treat specific conditions. The treatment Morgan needs would not make her "high", and she wouldn't smoke it. It would come in a bottle just like her other medications, but with fewer side effects. The medications that Morgan has tried have devastating side effects. They gave her kidney stones, ulcerative colitis, and compromise her respiratory system. She should be able to try this much safer option. But medical marijuana is still illegal at the federal level. It’s currently a Schedule 1 drug, which means the federal government considers it just as dangerous as heroin and says there is no medicinal value. This means our family would have to move to a different state to get it, or obtain it illegally and risk arrest. I have decided that neither of those choices are good enough for my family. That’s why I’m supporting the Compassionate Access, Research Expansion and Respect States (CARERS) Act -- a bipartisan bill that will let states legalize medical marijuana without federal interference. It will also expand research into the health benefits of marijuana and allow Veterans Affairs doctors to recommend marijuana to ailing veterans. The CARERS Act would remove also CBD from scheduling under the Controlled Substances Act, affirming to the world that marijuana does have medical benefits. This bill will change the lives of so many sick and suffering people, like my daughter, around the country. Please sign my petition asking Congress to pass the CARERS Act.
Petition to U.S. House of Representatives, U.S. Senate, President Donald Trump
Legalize Lyme Disease
Lyme disease has reached epidemic proportions. It is the fastest growing infectious bacterial disease in America. Generally contracted through a tick bite, new evidence shows it is also contractable via mosquito, spider, or fly bite , from mother to child in the womb , or potentially through unprotected sex . The CDC admits that it does not know how many people have Lyme disease. Estimates vary between 300,000 and 1.5 Million new cases diagnosed per year . These figures do not include tens of thousands of undiagnosed or misdiagnosed cases. 25% of all Lyme cases are children. When Lyme disease is not treated early it can be debilitating, even fatal. The spiral-shaped bacteria (Borrelia) bore their way through every tissue, organ, or bone, causing damage wherever they go. The bacteria knowingly avoid treatment areas in the body and by changing their shape, mimic non-threatening cells. They create intelligent biofilms to protect themselves from antibiotics and their host's natural immune response. Studies now show that 1 in 5 cases may go on to become chronic due to Borrelia "persisters" . Unfortunately, the CDC-approved test available for early detection fails approximately 50% of the time . And due to abysmal funding for research, effective treatments are experimental and often long-lasting. The CDC's illegal preferential treatment of out-of-date and inaccurate Infectious Disease Society of America (IDSA) Lyme Treatment Guidelines  support a government narrative that chronic Lyme does not exist. Thusly, insurance companies are not required to cover treatment costs and patients are left to pay for long-lasting treatment out of pocket. Lyme Literate Medical Doctors (LLMDs) who practice life-saving medicine for Lyme patients are forced to operate outside of the insurance industry, for risk of being shut down. Such little information and training is available to physicians across the country, patients are left to suffer for years before they even receive a diagnosis . By then, many have been misdiagnosed with any of the 300+ diseases that Lyme mimics . They have lost their jobs and are on disability. Some (including children and teens) are heavily affected by the neuropsychological effects of the disease and succumb to suicide . Others have died simply due to ignorance of doctors . This cannot continue. The CDC and IDSA have failed to control Lyme disease. As sufferers, care-takers, friends, family, and co-workers of those who are suffering, we urgently request from the President and all members of Congress: 1. Legislation Expanding The Definition Of Lyme Disease To Cover Chronic Lyme And Co-infections 2. Legislation Protecting Doctors Who Treat Chronic Lyme And Co-infections From Insurance Industry-driven Investigation And Shut-down 3. Heavily Increased Funding For Research Into Chronic Lyme Disease And Co-infections 4. Greatly Improved Testing With High Accuracy Rates (As Seen With Ebola And Other Infectious Diseases) 5. Education Of Doctors And The Public Regarding Symptoms And All Treatment Options -- This petition was originally featured on the We The People petition site. Thank you for signing and sharing with friends, coworkers, spiritual leaders, family members, loved ones, and strangers. It is time to Legalize Lyme disease, including chronic stage and co-infections! -- Sign to add your voice to establish proper legislation and funding of this global epidemic. Important resources: ILADS.org lymedisease.org lymestats.org lymediseasechallenge.org -- Sources:  New England Journal of Medicine: http://www.nejm.org/doi/full/10.1056/NEJM199006143222415Journal of Molecular Medicine: http://link.springer.com/article/10.1007/BF01711648Journal of Clinical Microbiology: http://jcm.asm.org/content/26/8/1482.full.pdfPubMed: http://www.ncbi.nlm.nih.gov/pubmed/4075471Folia Parasitologica: http://folia.paru.cas.cz/pdfs/fol/1998/01/11.pdf  Annals of Internal Medicine: http://annals.org/article.aspx?articleid=699780 PubMed: http://www.ncbi.nlm.nih.gov/pubmed/7648832  Journal of Investigative Medicine: http://www.lymedisease.org/lyme-sexual-transmission-2/Conclusions Raphael B. Stricker, MD On Sexual transmission of Lyme disease: https://twitter.com/NorVect/status/604992062421921792  Dr. Richard Horowitz discusses new case estimates with Congressional Candidate Zephyr Teachout: https://youtu.be/rTIeyKuo8JY  Scientific American: http://www.scientificamerican.com/article/lyme-disease-may-linger-for-1-in-5-because-of-persisters/  Journal of Infectious Diseases, Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program: http://www.lymedisease.org/lymepolicywonk-two-tiered-lab-testing-for-lyme-disease-no-better-than-a-coin-toss-time-for-change-2/  Advocates Call on CDC to Remove Expired Lyme Guidelines from all Publications https://www.webwire.com/ViewPressRel.asp?aId=202124  Study of over 6,000 Lyme patients: http://www.lymedisease.org/wp-content/uploads/2015/04/lymedisease.org-patient-survey-20151.pdf  Can Lyme Disease Be Chronic? Dr. Richard Horowitz: http://www.foxnews.com/health/2015/05/06/lyme-disease-debate-can-condition-be-chronic/  Psychology Today: https://www.psychologytoday.com/blog/emerging-diseases/200903/infection-can-change-your-personality-theres-plenty-proof?collection=126213  "Doctors Pushed ALS Diagnosis, Ignored Lyme", Valley Breeze: http://www.valleybreeze.com/2014-12-17/cumberland-lincoln-area/geraghtys-doctors-pushed-als-diagnosis-ignored-lyme#.Vub33JMrJE5  Tulane University study finds Lyme bacteria can survive antibiotic treatment months after infection https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-survive-after-antibiotic-treatment-months-after-infection
Petition to Food and Drug Administration, Dr. Susan T. Mayne
Tell the FDA to Ban Harmful Synthetic Food Dyes
A number of studies -- and an emerging scientific consensus -- demonstrate that some children experience episodes of inattention, hyperactivity, and other harmful behavioral effects following exposure to synthetic dyes. Many of these dyes, including Red 40, Yellow 5, and Yellow 6, require warning labels in Europe because of adverse health effects. Yet the Food and Drug Administration (FDA) has failed to act to ban these cheap, synthetic chemicals with no nutritional or essential value from food. Please sign our petition asking the FDA to ban synthetic food dyes in the United States, and, in the meantime, to require a warning label on dye-containing foods and beverages. Thousands of parents of affected kids confirm these findings and have sent our organization emails detailing their families’ struggles to identify that dyes are the cause and help their children. These dyes are sold in products like Fruity Pebbles, Hawaiian Punch, Kool-Aid, and many others lining the shelves of grocery stores. We need members of the public to tell FDA to ban dyes and, in the meantime, to require a warning label on dye-containing foods and beverages to let parents know of the issue. Given how widespread dyes are in food, public pressure on the FDA and companies that use dyes is the best way to win this fight. Consumers have used Change.org and other social media channels to successfully communicate these concerns to major companies, and as a result of this advocacy Kraft removed artificial dyes from Mac & Cheese products, Taco Bell and Panera eliminated these dyes, and General Mills and Mars announced they’re doing away with them as well! Banning dyes is an achievable step that will improve the safety of the food supply, and we believe members of Congress and consumers will be able to successfully pressure the FDA to take decisive action to remove these dyes from our food system. In Europe, most synthetic dyes dropped out of the food supply after the European Union required a sensible, clear warning notice on foods containing dyes, based on studies done in the United Kingdom that showed the harmful effects of dyes on kids. Yet many companies that removed dyes from foods in Europe continue to sell the same foods in the United States with the artificial dyes still in them! As detailed in our recent report, Seeing Red: Time for Action on Food Dyes, studies show that susceptible children—which may number more than half-a-million in the U.S.—experience episodes of inattention, hyperactivity, or other behavioral effects, after consuming foods containing synthetic dyes. In addition, recent research has revealed far higher levels of dyes in commonly consumed foods than was previously thought. Please sign our petition and share it with your family and friends.
Petition to U.S. Senate, U.S. House of Representatives, President of the United States
Reject the FDA's Deeming of Vapor Products as Tobacco Products
Soon Congress will be presented with regulations proposing to deem electronic cigarettes and other vapor products as tobacco products, bringing them within the regulatory control of the FDA under the Family Smoking Prevention and Tobacco Control Act. We, the members of the vaping community, including users of vapor products, current and ex smokers, concerned citizens, and friends and family of those whose lives have been or could be changed by vapor products, urge you to reject the proposed deeming regulations. The classification of vapor products as tobacco products is tenuous at best. While some vapor products do contain nicotine, many do not, and this is where the link to tobacco ends. The goal of the FSPTCA is to minimize the effects of tobacco on public health. In 1976 Professor Michael Russell wrote: “People smoke for nicotine but they die from the tar.”1 Vapor products are free of tobacco, contain no tar, and are not combusted and as such are orders of magnitude less potentially harmful than combustible tobacco.2 In fact, more recent studies that look at nicotine, absent tobacco smoke, show that nicotine is possibly not addictive and could have potential health benefits related to treating Parkinson’s symptoms and staving off Alzheimer’s.3 The Federal government and each state have spent hundreds of millions over decades attempting to discourage people from smoking cigarettes. We now have a viable alternative to tobacco products that could do just that, through tobacco harm reduction. This life changing technology has the potential to accomplish what Tobacco Control has failed to do for the past fifty years, unless it is smothered in its infancy. Vapor products, as a recreational consumer good, have the potential to replace combustible tobacco, keeping millions from potential tobacco related illnesses. According to recent CDC surveys, in the time frame that vapor products have been available, smoking rates in the United States have plummeted to an all time low.4 However, if vapor products are subjected to the same strict regulatory control intended to minimize harm from tobacco products, they could be rendered ineffectual due to the stifling nature of those regulations.5 By rejecting the classification of vapor products as tobacco products we can: 1 Protect access to flavors, which are an integral part of the vapor experience.6 2 Protect access to online sales that allow consumers to procure the equipment and e-liquids that are best suited for their needs. 3 Protect access to all nicotine concentrations, which allow the consumer to tailor their experience to their needs which could range from higher concentrations to aid in transitioning from smoking to nicotine free for enjoyment and maintenance. 4 Protect access to open, reusable container systems that are more cost effective and environmentally friendly. 5 Allow for the continued innovation and refinement of products currently on the market. Vapor products are not tobacco products, they are a safer alternative to tobacco products which may or may not contain nicotine. Vapor products are also a driving force behind thousands of small and medium businesses across the country, creating jobs and feeding the economy, many of which will not survive the exorbitant fee structure of tobacco product approval that has kept the cigarette market in the hands of only the major tobacco companies. The vapor product industry has already gained ground in self regulation by the formation of industry trade groups, and through the active involvement of the consumers.7 Instead of relegating vapor products to tobacco control, a new category of product regulation can be implemented, one that could inspire innovation along with public health and safety. The best way to protect this life altering technology is to not place it under the auspices of the FSPTCA, by not deeming vapor products as tobacco products. #vaporisnottobacco Cited References 1 http://www.bmj.com/content/1/6023/1430.full.pdf+html 2 http://www.mdpi.com/1660-4601/12/4/3439 3 http://discovermagazine.com/2014/march/13-nicotine-fix 4 http://www.cdc.gov/media/releases/2014/p1126-adult-smoking.html 5 http://blog.casaa.org/2014_04_01_archive.html 6 http://vaping.com/data/big-survey-2014-initial-findings-eliquid 7 CASAA.org AEMSA.org SFATA.org Additional Resources: http://notblowingsmoke.org http://www.ecigarette-research.org/research/index.php/research/research-2015/210-ald http://blogs.biomedcentral.com/on-health/2015/05/28/research-behind-giving-cigarettes-qa-leading-expert-peter-hajek/ http://mnvapers.com/2014/04/epa-fda-vapor-harmless-children/ http://www.ecigarette-research.org/research/index.php/research/research-2013/135-evaluation-of-the-cytotoxic http://www.casaa.org/Clinical_Research.html http://www.biomedcentral.com/1471-2458/14/18/abstract http://www.ecigalternative.com/ecigarette-studies-research.htm http://www.ecigarettedirect.co.uk/ashtray-blog/2015/05/real-experts-e-cigarettes.html http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110871/?report=classic
Petition to Jeff Flake, John McCain, Donald Trump
Fight For Those Who Fought For You
As federal patients, Veterans are being prescribed extremely addictive pharmaceuticals linked to widespread death across the country. Despite this fact, these pills remain at a lower classification within the Controlled Substances Act (CSA) than cannabis. Cannabis has helped many people suffering from debilitating conditions such as PTSD, cancer, chronic pain, addiction withdrawal and has statistically lowered the suicide rate in states where it is “legal.” Veterans Health Administration (VA) primary care teams should be educated on how to best implement cannabis into a veterans treatment plan. When a patient is a legal medical cannabis card holder as well as a veteran, they should be afforded the freedom to use cannabis within the VA system as a recognized medical alternative to psychiatric drugs without any discrimination or unjust actions against them. Do you agree: Should veterans be able to treat themselves with medical marijuana? If you do, please join us in the fight to provide veterans safe access and compassionate care within the Veterans Health Administration.
Petition to Hillary Clinton, Donald Trump
Commit to act for paid family leave for all in your first 100 days
Under ordinary circumstances, two mothers as different as we are would never have met. One of us is from Oklahoma and is a registered Republican. The other is an unmarried liberal who lives in Brooklyn. But tragedy has a way of bringing people together. Last year, we both lost our babies, infant sons who died at daycare, after we’d left them in childcare to return to work. Neither of us wanted to leave our babies when we did, at mere weeks old, not yet. But neither of us had the luxury of choice. Our respective employers would not grant us any more time for parental leave, and we couldn’t afford to quit our jobs. So, reluctantly, on an April morning in Oklahoma, baby Shepard was left at daycare. A childcare worker swaddled him for a nap, placed him in a car seat, and didn’t check on him. He slipped down and suffocated, still too little to lift up his own head. Just as reluctantly, in July, baby Karl was dropped off for his first day at daycare near his mother’s Manhattan office. When she came back to feed him at noon, Karl’s lips were blue and a childcare worker was performing CPR. A medical examiner could not determine why this healthy baby died. 1 in 4 American moms have no choice but to return to work just two weeks after the birth of a child. 87 percent of parents have no access to paid leave through their employers. No parent should have to choose between leaving their baby too soon and making ends meet. Given that 73% of Republicans, 87% of independents and 96% of Democrats agree it is important for Congress and the president to consider a family leave insurance system, we are jointly calling on the candidates for president, Republican and Democrat, to publicly commit that, if elected, they will take action for national paid family leave policy in their first 100 days in office. Most babies don’t die in day care, of course. But, as it turns out, our instinct that Karl and Shepard would be safer if we could have stayed with them a little longer was not wrong. An important study released last week found that for each additional month that a woman has paid parental leave, infant mortality goes down 13 percent. America has the highest infant mortality rate of any industrialized nation in the world. Paid leave, in countries that have implemented it, has dramatically lowered infant death rates. But beyond this, parental leave is good for our children. When Norway began offering paid parental leave, there were dramatic long-range effects: children had lower high school dropout rates, higher rates of college attendance, and higher incomes at age 30. American babies whose mothers don’t have maternity leave are less likely to be taken to the doctor, and less likely to be breastfed. Toddlers of parents without access to paid leave have more behavioral problems, and score lower on cognitive tests. Every American baby would be safer, healthier, and have a better start in life if given time with their mother or father during the first months of life. If our political leaders claim to be pro-family, they need to put families first by supporting paid family leave. In the richest country in the world, we should not have sobbing mothers leaving their premature babies in the NICU because they have to return to their jobs. We do not need to tear babies from their mothers’ arms before they can even hold up their own necks. Parental leave is a necessity, not a perk. Join us, a mom from Oklahoma and a mom from Brooklyn, in calling upon the presidential candidates of both parties to publicly commit that, if elected, they will take action for paid family leave policy in their first 100 days in office. Through our great loss, we are now united to fight for change. We charge our leaders, both Republican and Democrat, to enact laws that protect the right of every American baby to have the loving care of a parent during the fragile first months of their life.
Petition to Kemp Hannon, Richard Gottfried, John Flanagan, Carl Heastie
Enact the "Dream law" Bill S1165/ A5514 for all Transplant Patients 2018
TITLE OF BILL : An act to amend the public health law, in relation to deeming central venous lines as medically necessary Dream Shepherd is an 12-year-old girl who has courageously battled Sickle Cell Disease and who suffered a stroke in 2010 at the age of five. In December 2014, as part of a study, Dream received a stem cell transplant as part of her treatment plan and fight against Sickle Cell Disease. After the transplant she remained in the hospital for several months, while Doctors worked to stabilize her immune system, which was crucial to her discharge and transplant success. Additionally while in the hospital Dream had a Central Venous Line placed into her heart. The Central Venous Line has strict care requirements. In New York State Health Facilities only Registered Nurses are legally allowed to administer I.V. medications with use of a Central Venous Line; which have to be properly managed to ensure that Dream, and other's with a Central Line, do not acquire infections, especially if immuno-compromised. This central line goes directly into the right atrium of the heart, and requires immediate action should there be a disconnection for any reason as a patient with this type of line can exsanguinate should this go unmonitored or unnoticed. In addition to the high risk of infections, other complications of Central Venous Lines include Air Embolism, Pneumothorax, Pinch-off, Syndrome, Drug Precipitates, Thrombosis, Catheter Occlusion, Catheter Malposition, and Sepsis a severe blood infection caused by bacteria, viruses, and fungi. Sepsis is extremely serious and can be life-threatening. Due to the high potential for dangerous infections, as part of discharge planning, Dream's mother, who is not a medical professional, made a request for a skilled private duty nurse to care for Dream's central venous line. This request was denied by the insurance company as it was "not deemed medically necessary." Due to this rejection by the insurance company, the hospital informed Dream's mother, that she was required to provide the necessary care to Dream's central venous line. Not ensuring that Dream would have the correct and proper skilled nurse to provide the care after discharge which could have caused irreparable harm, including the worst outcome. Attempting to force the mother to provide the care would have required her to lose her job and source of income, along with saddling her with the anxiety of overseeing the medical attention that if not done properly, could lead to the loss of her daughter's life. That is a position no family member or friend should ever be in.
Petition to The Cancer Industry, Cancer Organizations, and Governments
PETITION FOR BRIGGS FOR CANCER IMMUNOTHERAPY FOR ALL - A New Era
Thanks for coming here in Briggs's memory. I tried for a year to get access to the immunotherapy she needed. Just four days after I heard we finally had a chance, I lost her to complications brought on in what was meant to be a short emergency hospital stay. It should never have been that close. And no-one should ever have to go through all Briggs did. Cancer disguises itself. Immunotherapy either alerts the immune system to it or does such things as block the disguise. The immunotherapeutic vaccine (curative not preventive) I'd been pursuing for Briggs had brought complete remissions in stage IV colorectal cancer. Immunotherapy's a potential cure in all other solid-tumor cancers such as breast, lung, renal, and pancreatic. The Vice Chair of Neurosurgery at University of California, Los Angeles has successfully used it in the usually incurable brain cancer that took Senator Ted Kennedy and, in 2015, Joe Biden's son Beau. She has patients still cancer-free at over 10 years. In early 2016 an immunotherapy put President Jimmy Carter's stage IV melanoma into complete remission despite it having already spread to his liver and brain. Development of it was led by a professor on this petition. Immunotherapy's also worked in acute leukemia. In 2012 all treatment had failed with a 6-year-old girl at the Children's Hospital of Philadelphia. Her condition was terminal, but a test after 3 weeks showed no cancer. 60 Minutes later ran a story on it. Memorial Sloan-Kettering has succeeded in adult leukemia. If you'd like to read more on immunotherapy, this article of mine about it and Briggs was featured by the Huffington Post and Stand Up to Cancer: 30 Stars and Doctors Sign the 'Petition for Briggs for Cancer Immunotherapy for All'. Former NYC mayor Mike Bloomberg and Amazon's Jeff Bezos and his family have donated tens of millions to cancer centres for the development of immunotherapies. Bill and Melinda Gates have invested in a company focused on them. It takes anywhere from $350 million at a biotech to $5 billion at a major drug company to bring one new treatment to the market. Tens of billions are needed from, among others, Congress. Please join us in calling for governments, the cancer industry, and cancer organizations to reorient the primary direction of funding, research, and treatment to the safest, most potentially effective immunotherapies in every cancer, and, notably in this context, curative immunotherapeutic vaccines. (The one I'd tried to get Briggs had a perfect safety profile.) Not trials for trials' sake, which has too often been the case in the past with chemo, etc. An overabundance of unwarranted trials only leads to lack of oversight and harm. And in conjunction with that, to make information on immunotherapy routinely and widely available to patients and caregivers. (If you've read Briggs: Love, Cancer, and the Medical Profession, comments to build awareness would helpfully reach more people as a book review on the Amazon kindle/paperback page: www.Amazon.com/BRIGGS. Only the latest show below.) Heartfelt thanks for signing in Briggs's memory, to begin changing this for others as she so wanted, and for anyone you know with cancer; I hope not a close loved one or you yourself. Paul_________________________________A sister petition to this one addresses Medical Errors, the third leading cause of death in the U.S. Briggs is one of millions who have died from their treatment, not their cancer: Petition for Briggs for a New Era in Medical Care and Treatment _________________________________Join Rod Laver, Martina Navratilova, Nick Kyrgios & 10 squash greats in the Volleying Challenge for Briggs's Petition_________________________________I've also begun a petition to put Briggs's beautiful, smiling face on the cover of TIME Magazine to begin this new era. 40,000 people have signed so far: Put Briggs on the Cover of TIME. _________________________________Twitter: @BRIGGSsBook