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.
Petition to Donald Trump, Paul Ryan, Mitch McConnell
Tell Trump, Ryan and O’Connell, No Obamacare Repeal without a Plan
We are petitioning our new leaders to do right by the American people by not rushing to repeal the Affordable Care Act until they show the American people a socially responsible and fiscally feasible plan for affordable, accessible health care. We heard throughout the presidential campaign that the GOP can do better than Obamacare. We also heard President-elect Trump clearly state, in a tweet: “I was the first & only potential GOP candidate to state there will be no cuts to Social Security, Medicare & Medicaid.” In his opening remarks to the new Congress on Jan 3rd, Speaker Paul Ryan declared: “And so I want to say to the American people, ‘We hear you. We will do right by you. And we will deliver.’" With respect to healthcare “to deliver” means improved access (in addition to the 20 million people added with Obamacare), improved health benefits, affordable health benefits and lower overall costs. To Repeal Obamacare through a backdoor budget reconciliation bill without including the plan for improvement is NOT “doing right by the American people”, it is nothing more than the old politics we have seen... “politics in the swamp.” The American people voted for real actions that will affect their lives positively. The GOP has to “get out of the swamp” and send their promised plan for improved affordable, accessible health care, including the transition plan from Obamacare, to the House floor to be voted on. Repeal without a plan is NOT a solution.
Petition to •Office of Social Security Disability Administration -Federal Government of the United States
Place Dercum's Disease Syndrome (AKA: DD & AD; Adiposis Dolorosa) on the SSD Compassionate Allowances List of Diseases
A disease is defined as “RARE” in the U.S when it affects fewer than 200,000 Americans. Dercum’s Disease (DD), aka Adiposis dolorosa, is an extremely rare and very painful orphan disease. It is debilitating, devastating, and disabling! The face you see with this petition is that of my 10 year old; it is the face of not only a broken heart, but the devastation of what happens to her and other children who have a parent with this disease. It is the very face that I look at every day and pray to GOD that the illnesses and symptoms she is experiencing are not the beginning of her developing DD or a similar disease. NORD and the NIH have verified the extent and complications we experience as patients on a daily basis and it has been agreed upon that it is a syndrome. It is in the “TOP 10 of rare and most painful diseases known to mankind” and for many of us we go “hour to hour” not “day to day”. DD can cause obesity very quickly despite exercise and diet. Unfortunately for those of us who have DD, there is not enough accurate information and research available in the medical community or the Social Security Disability Judicial system to help us. We can have our tumors cut out, but in 50% of cases, they grow back and sometimes multiply. DD is an ORPHAN DISEASE and it has no parent, so no facet of the medical community claims it. 99.5 % of Dr.’s have never heard of it and many times we are treated like we are crazy or criminals because we seek help for our pain. Most traditional medications don’t work for us because we don’t fit inside the “box” that has been designed for regular patients. We are discriminated against, mislabeled, misjudged, and misdiagnosed by the time we get the correct diagnosis. We are then informed that “we are the footnote at the bottom of a medical textbook”! Place Dercum's Disease (AKA : DD & Adiposis Dolorosa) on the SSD Compassionate Allowances List of Diseases. · DD is an extremely progressive, degenerative, debilitating, and infiltrative disease that is systemic. There is no cure and it’s unknown if it’s genetic. It affects women 5-30 times more than men. · There are 3-4 different types of DD and a patient can have more than 1 type and more than one disease. There is only 1 specialist in the United States who actively treats Rare Adipose Tissue Disorders- Dr. Karen Herbst (lipomadoc.org) who is currently at The University of Arizona Medical Center. · People with DD develop painful lipomas and angiolipomas all over their bodies. It is thought that the tumors put pressure on and wrap around nerves, include connective tissues, form in or around joints and is an auto-immune disease. There are some of us who even have them in our head and it is agonizing! · DD is "like" a fatty tissue rheumatism and parts of your body can swell for no reason. As the disease progresses, you are unable to work b/c of the pain and complications. You can have low grade fevers that come and go. You can feel like you are being stabbed, bitten, and have a crawling or burning sensation all over your body. · Any and all layers of fat throughout your body are eventually affected and tumors can grow in lungs and right out of the tissue in any organ. DD is a dysfunction of your lymphatic and vascular systems. · There are many other symptoms and complications that have been experienced and impair our ability to work. Many of us have a variety of different issues and struggle to get accurate medical treatment for them even though they cause more pain. Some of them include, but are not limited to: Edema, Lymphedema, Lipedema, Lipoedema, Sleep Disorders, Fatigue, Vitamin Deficiencies, Tachycardia, Shortness Of Breath, Diabetes, Fibromyalgia, Thyroid Disease, Bone Pain, Congestive Heart Failure, myofascial pain syndrome, Connective Tissue Disorders, Blood Pressure issues, Arthritis, Seizures, Nervous System Dysfunction, Vascular Impairment, Bleeding or Clotting Disorders, Anxiety, Cardiovascular Disease, Vision And Hearing Disturbances, Migraines, Neuralgia, Extreme Joint Pain, Mast Cell Disorders, Memory Impairment, Brain Fog, Neuropathy; the list goes on and on. Quality of life is poor without a proper treatment plan. We can’t even get an accurate treatment plan unless we are fortunate enough to see Dr. Herbst. When an outbreak occurs, new tumors can develop daily. Outbreaks are brought on by illness, stress, and sometimes just because your body is constantly attacking itself. · Medication and durable medical equipment costs cause most of us to suffer more because we can’t afford them. We NEED our disease to be placed on the “compassionate Allowances List” of disease so that we can start getting the help we need. · DD CAUSES DEPRESSION IN MOST OF US. We don’t want to continue to live in constant pain and have no resources available to help us live to the best of our ability. I am tired of fighting for recognition, financial stability, and constantly having to prove my disease and pain ARE REAL. Most of us have lost ourselves and everything we worked so hard for: cars, homes, careers, income, dreams, friends and families. When the time comes that we can no longer walk, use our hands and arms, do regular household tasks, let alone continue to hold down our jobs, we get turned down by the SSD administration because they have never heard of our disease. They don’t understand the pain, dysfunction or disfigurement that accompanies it. We then become doubly discriminated against for that reason alone. Once your initial SSD claim has been denied and you file an appeal, in many states, you have to wait and be unable, and out of work for at least 1+ full year before you can even get on a waiting list for an appointment with a SSD judge! I can tell you from experience that we lose everything in that waiting time frame and become destitute and poverty ridden because you can’t support yourself or family. You also lose your medical benefits and have no income because you can barely walk let alone work. Just imagine having this horrid disease and then being told that you can’t collect SSD because a judge has never heard of it. Many of us will end up fighting the system for years and get worse and worse in the process. Please help us get DD on “the compassionate allowances disease list” for SSD and SSDI. According to The National Disability Institute 1 in 3 disabled individuals live in poverty. We are so few in number because of the rarity of the disease that we don’t pose a threat SSD reserve and we have paid into it our entire working lives. I started this petition because I have just turned 40 and have had this disease for 7 ½ years. I was stricken with it the day after my son was born and it took me over 3 years to get a diagnosis. Within this last year I have become progressively worse to the point that I can no longer work or take care of my kids, home, or self. How can i fight and protect my kids when i can't even take care of myself by getting the proper treatment i need and deserve? I have lost everything and am not going to get any better. I was never really sick a day in my adult life before this disease struck me and I wouldn’t wish this on anyone! I am asking you to please help and make a difference by fighting for those who can no longer fight for themselves. By signing my petition you will be helping us in our battle to get our disease recognized as the compassionate disease that it is. This is the first step that will enable us to help educate professionals and get the research funding that we so desperately need. If we could focus on fact and research instead of fighting a system that’s designed to keep us down and sick, we could make much needed medical advancements, not only in our disease, but others as well. Statistically, there are more than 7000 rare diseases and combined they make up more than 1/3 of all illnesses.However, they are poorly researched because there is no monetary gain for drug companies. While I may be a statistic, I refuse to be just another number and this is the only way I can fight back. This is about about our children now and trying to prevent them from developing a disease that is the equivalent to a long suffering death sentence. Please help me and others with my disease by signing my petition. Thank you.
Petition to U.S. House of Representatives, U.S. Senate, Paul Ryan, Mitch McConnell
Congress' Retirement Must Be Like Everyone Else's
Congress continually wants to modify both Social Security and Medicare to cut costs but fail to address their own bloated pension and health benefits. (A single individual's pension, alone, can exceed $100,000 annually.) It is simply unacceptable that taxpayer money continues to support benefits for Congress and its employees at a time when the rest of the citizens are being asked to accept benefit cuts. This petition is simple: Congress, including both the House of Representatives, Senate, and all of their non-Civil Service employees must be converted from the existing, extravagant pension and retirement medical plans to have only Social Security and Medicare eligibility before any legislation that changes the benefit calculations or payments for those programs can be proposed.
Petition to Mitch McConnell
Tell Mitch McConnell: Save Our Healthcare!
We, the undersigned, do hereby petition our Senator, Mitch McConnell, to halt the undemocratic process being used to develop the healthcare reform bill, currently known as the Better Care Reconciliation Act. We call for bipartisan committees, open hearings, and an amendment process sufficient to allow input from both parties. We call for opportunities for all stakeholders to be invited to participate in the process of developing a bill. We demand a process of sufficient duration to accomplish the above. We request that any healthcare bill safeguard our most vulnerable citizens. We oppose the currently proposed cuts to Medicaid including elimination of the expansion and the change to per capita caps/block grants that will reduce revenue available to care for the disabled and elderly. We oppose changes that fail to adequately protect those with pre-existing conditions and that burden older Americans with premiums that are unaffordable. We oppose the elimination of protections such as lifetime limits and essential health benefits. We oppose any bill whose CBO score indicates that substantial numbers of citizens will lose health insurance because losing health insurance coverage can mean losing life for many individuals as well as significant loss of liberty and quality of life for millions more.
Petition to Colleen Hanabusa, Mazie Hirono, David y. Ige
Medicare For All needs our help, so let's create a Health Caucus in the HI Dem Party
Aloha! We want Universal Single Payer Health Care, aka, Medicare For All, but, congress needs persuasion, Governor Ige needs persuasion, so, let's up our organizing game by making a Health Caucus in the Hawaii Democratic Party. If Democratic Parties in all states form a health caucus aimed at getting HB676, Medicare For All, passed, we might create the enthusiasm the democratic party needs to do something we all want, and then based on that success, retaking congress in 2018 could become a possibility. I'm not sure how appealing the democratic parties current theme is: "the ACA is as good as it gets, don't ask for what the rest of the world has, just oppose republicans, and keep voting for us." With a Health Caucus, we can better represent people who are suffering from the economic injustice of our current 'private insurance' model of Health Care. Universal Health Care will wipe away many of the hardships currently faced by people with disabilities, rare diseases, who have low income, and might be a senior citizen. It will significantly lower the cost of health care while improving the delivery of health care. Business will save enormously, and, Universal Health Care makes Workers Compensation insurance unnecessary. Think about that; no more workers compensation insurance to pay for. Employees, when injured, just go to any doctor they want, without needing to prove that the injury was work related. http://www.pnhp.org/ Our first meeting is this Wednesday, May 17, at the Hi Dem Party HQ on Oahu. Event info can be found here: https://www.facebook.com/events/1690230837945550/ The meeting will be live streamed and is available for phone conference: Here is the info for the conference/video conferencingTo join the conference via phone: Dial: (712) 451-0200Access Code: 938390 To participate in the video conference: Online Meeting Link: https://join.freeconfere ncecall.com/dph2017 Online Meeting ID: dph2017 Aloha! Dennis B Miller Email: email@example.com https://www.facebook.com/groups/healthcareforallhawaii/ www.healthcareforall-hawaii.com
Petition to Donald Trump, U.S. House of Representatives, U.S. Senate
Tell Congress to Let Medicare Negotiate Lower Drug Prices
Most Tuesdays, I sit in a treatment room to fight my never-ending battle with incurable cancer. I am grateful for the drugs working to hold my blood disease in check. Unfortunately, what isn’t being held in check is the drug price. My drugs are priced at $20,000 per treatment. With 22 treatments this year, that’s $440,000. Outrageous. Before this, I took a drug that costs a typical Medicare patient $11,500 out-of-pocket every year. These are Americans with a median income of $24,150 per year. My wife - a breast cancer survivor - and I founded Patients For Affordable Drugs to amplify the voices of Americans struggling under crushing drug prices and to make policymakers and elected officials see the heavy toll on real people. We don’t accept funding from organizations that profit from the development and distribution of prescription drugs. The craziest part about drug prices is that Congress can fix it. Right now, Medicare is forced to accept prices dictated by drug companies. Drug corporations and their lobbyists rigged the system to give themselves monopoly pricing power. They charge whatever they want for new drugs and often raise prices for old drugs with impunity. In fact, the law explicitly prohibits Medicare from negotiating the price of drugs. It’s time for change. As long as Medicare can’t bargain, patients will pay higher prices. Sign your name and tell the President and Congress that Medicare should negotiate lower drug prices for patients and taxpayers. Sincerely,David Mitchell, Patients For Affordable Drugs Co-Founder and President
Petition to Kevin Brady, U.S. House of Representatives, Mike Enzi
HELP PEOPLE WITH ORPHAN DISEASES GET THEIR LIFE-SAVING MEDICATIONS
I am one of about 400,000 people in the U.S. who suffer from relapsing multiple sclerosis, a disabling disease which affects the central nervous system. Other rare diseases include ALS (Lou Gehrig's Disease), muscular dystrophy and sarcoidosis. I lost my career to this disease, as I have become totally disabled. Treatment for these diseases is very costly. There is no cure for MS, but the disease can be managed. There are currently 12 FDA-recognized therapy medications, and even less for relapses. My daily therapy medication costs $6,500 per month, and the relapse medication costs $40,000 per treatment. This far exceeds my and my husband's total income, as my husband is totally disabled from a stroke. Obviously, very few people can afford these treatments, especially when they are fully disabled. There is help available; the drug companies which make these orphan drugs have programs that allow the patient to receive the drugs at low cost or for free. HOWEVER, PEOPLE WHO ARE ON MEDICARE CANNOT RECEIVE THIS HELP. A provision of the Social Security Act designed to prevent Medicare fraud also makes it a felony for a drug company to directly assist a patient financially if that patient has purchased a Medicare Part D prescription plan which covers these drugs. Many Part D plans do not even cover these drugs, but those which do leave the patient with expensive co-insurance of thousands of dollars in order to get these life-saving drugs which are simply unaffordable, especially for those who cannot work because of their disease. YOU CAN HELP! PLEASE LET CONGRESS KNOW THAT IT MUST AMEND THE SOCIAL SECURITY ACT TO PERMIT DRUG COMPANIES TO PROVIDE PATIENTS WITH RARE DISEASES WITH DIRECT FINANCIAL ASSISTANCE SO THAT THEY CAN GET THEIR LIFE-SAVING MEDICATION!!!