Access to Healthcare
Petition to U.S. Congress
Test All Babies for ALD - Vote Yes on Aidan’s Law
Aidan Jack Seeger was a happy, healthy, spirited NY boy who, at age 6, suddenly developed vision and concentration problems. His parents thought he just needed glasses. He was misdiagnosed several times. His sight went entirely, then his ability to walk and talk. Eventually, doctors figured out that Aidan had adrenoleukodystrophy (ALD), a mysterious and deadly brain disease. Eleven months later, he was gone. The worst part? If the disease had been caught early, Aidan could still be alive and well today. Aidan’s parents, Elisa and Bobby Seeger, have since made it their life’s work to save other children. ALD afflicts 1 in 17,000 people, mostly boys and men, silently ravaging their central nervous systems. Results include blindness, deafness, seizures, progressive dementia – leading to permanent paralysis or death. But there’s a solution: newborn screening of ALD. If the disease is caught before the onset of symptoms, it can be treated and, in some cases, entirely reversed. Through the Seegers’ hard work and commitment, newborn screening for ALD became law in New York State. They are now fighting to pass “Aidan’s Law” (S. 2641 & H.R. 4692), which would require ALD screening in all 50 states. The procedure costs less than $2.50 per infant, and the price will go down as it is adopted in more states. We have no excuse not to pass this bill. Help us save our boys. Please join us in calling on Congress to pass Aidan’s Law and require newborn ALD screening in all 50 states. In two years of ALD screening in NY, 46 babies have been diagnosed with the disease —that’s 46 lives saved. Three more states will begin newborn screening of ALD soon, but that leaves people in 46 states in the dark about this silent killer. We must fight for them – for their children. Screening of ALD requires a single drop of blood taken from a baby’s heel at birth, and costs less than a cup of coffee. Please join us in urging Congress to do the right thing, and pass “Aidan’s Law” requiring newborn ALD screening in all 50 states.
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
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. 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 President Trump, Christopher Dental, Elliott F. Kaye, Paul Gosar, Louisiana State House, President of the United States, U.S. Senate, Cpsc , Donald Trump, U.S. House of Representatives, Environmental Protection Agency
Ban Toxic Chinese Drywall, Provide Medical Monitoring, Injunctive Equitable Relief, Public Awareness
After Hurricane Katrina, our Family moved from Louisiana to Florida. We bought a new house and were thrilled to be getting a fresh start. However, our happiness was short-lived. Soon, the entire family’s health, and our house’s appliances, air conditioning unit, and wiring all began failing. It was a bizarre nightmare. What we learned later was that our walls were literally made from poison. After talking to neighbors who were experiencing the same issues, we brought in a forensic toxic specialist. Our drywall had been shipped in from China and was made with toxins that should never have been allowed in a building product. But by then, it was too late. Our builder had gone out of business, our insurance had a pollution exclusion, and our mortgage company said we were responsible. I filed a complaint with the insurance commissioner and after investigating they dismissed my complaint stating in fine print there was a pollution exclusion, I knew they weren't referencing these gasses emitting from Chinese Drywall. I need your help to make sure no family has to endure what we are facing. Join me in demanding that all Chinese drywall be banned from the United States until it has been guaranteed to be safe and toxin-free. After hurricanes Katrina and Rita, Chinese drywall flooded the US market. According to shipping information Knauf Tianjin sent at least 38.7 million pounds of Chinese Drywall, Knauf Wuhu sent 28.6 million pounds. Based on U.S. customs and census information these figures indicate 78% from these two China plants in 2006. Those numbers have continued to increase affecting more innocent homeowners. It was used in countless homes, and thousands of families are currently involved in lawsuits over it. They have experienced the same horrible health effects as us, such as eye and upper respiratory infections, chronic nose bleeds, vomiting blood,scalp sores, migraines and chronic fatigue, and have also seen it destroy everything they worked hard to build. The problem is so bad that Congress passed a bill to learn more about the dangers of Chinese drywall used in homes like mine. We ended up having to walk away from our home, losing over $100,000 in equity. After we did, it was bulldozed to the ground. When we moved into a new place, we learned that it, too, had Chinese drywall. This toxic product is everywhere. There is reports of eleven infants at Fort Bragg that have mysteriously died and the homes contained Chinese Drywall. This design defect by China allowed high levels of sulfide gasses: carbon disulfide, carbonyl sulfide, dimethyl sulfide and other chemicals to emit through off-gassing into our homes. If it can corrode wiring turn our metals, silverware, jewelry black, what is the long term health effects we face? We have photos of congress entering our homes wearing masks, however their saying theirs no danger when you leave. They refuse to study the health effects that families have suffered and continue to suffer daily. My family has never received justice. We still suffer from ill health, our credit has been destroyed, and we have to scrape every penny just to get by day-to-day. We are no longer home owners, we rent. Recently, I learned I have thyroid cancer, and I know in my heart that it is from the Chinese drywall. A home is supposed to protect you, not kill you. It is time to ban Chinese drywall until we have answers and guarantees that it is safe.
Petition to Charles Schumer
Increase access to proper health care for incarcerated individuals.
The purpose of this petition is to urge support from our State Senator in the efforts to preserve the Affordable Care Act (ACA) - a landmark statute that expanded health insurance coverage for millions of Americans - including individuals involved in the criminal justice System (CJS). Prior to the ACA 80-90% of individuals in prisons and jails were uninsured, both before and after incarceration. The ACA was a turning point for uninsured individuals in the CJS - who, prior to its passage, were often released from jail or prison with no insurance and no way to access healthcare services. Research shows that the first two weeks after prison release an individual’s risk for death is 12.7 times higher than the general population, especially due to drug overdose and cardiovascular disease. The ACA has made it possible for CJS-involved individuals to obtain health insurance. Lack of insurance means individuals will have limited or no access to health-related services and without services to address chronic illness, mental illness, and drug addiction many will cycle back through the CJS and be incarcerated again. The ACA is a step towards actualizing and protecting health as a human right. In addition, this petition was created to encourage our State Senator to file an 1115 Demonstration Waiver to expand the services covered by Federal Medicaid funds while an individual is incarcerated. Studies have identified that in comparison to the general population CJS-involved individuals are burdened with higher rates of health conditions: 50% of incarcerated individuals report having a chronic health condition (vs. 27-31% of general population); 14-21% report a diagnosis of an infectious disease (vs. 5% of general population). In addition, 53% of individuals in all state prisons and 45% of individuals all federal prisons meet the DSM criteria for drug dependence. Submitting a demonstration waiver to allow Federal Medicaid funds to pay for basic health care needs including the initiation of substance use and mental health services will help to remove barriers to treatment and will not only improved individual health but also improved community health. Submitting a demonstration waiver is an important step in the efforts to protect incarcerated individuals human right to health. Lastly, this petition is to urge support from our State Senator in efforts to improve correctional health services to protect an incarcerated individuals human right to health. Through additional support and funding, incarcerated persons with physical health, mental health and/or addiction will be able to receive better treatment services while imprisoned. Without proper medical care and consistent treatment, incarcerated individuals often experience high levels of sexual and physical abuse by other inmates and prison guards. In addition, without proper care incarcerated individuals have a higher rate of recidivism. It is of most importance that our State Senator help to restore and protect incarcerated individuals basic human right to health. Created by MSW Students - Jennifer Maine, Shelby Bour, and Nicole Jezairian
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 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.