Petition to U.S. House of Representatives, U.S. Senate
Don't Deny Compensation to 9/11 First Responders
My name is John Feal and I’ve been to 181 funerals since September 11, 2001, for first-responders who joined me at Ground Zero after the attacks on the World Trade Center. They are now dying from cancer due to exposure to asbestos, burning jet fuel, burning computer parts, pulverized concrete and other toxic substances. By 2021, it’s expected that more people will have died from toxic exposure than were killed in the attacks. And Congress could break their promise to provide them with compensation. I went to Ground Zero hoping that my experience as a US Army veteran and demolition supervisor could save lives. Seventeen years later, many of my fellow responders have died or are dying from cancer, respiratory illness, and other health problems caused by their exposure to debris and toxic chemicals. In 2015, we successfully fought to reauthorize the James Zadroga Health and Compensation Act, which ensures victims could receive health screenings and medical benefits for 70 years, and compensation through 2020. In less than two years, that Victim Compensation Fund will close — and it’s already running out of money. After 9/11, the EPA assured the responders and residents that "the air is safe," and hundreds of thousands of residents and workers returned. Today over 10,000 people have been diagnosed with WTC-linked cancers and more than 2,000 of those people have died, including 184 NYC firefighters. I live with the memory of the lives lost that day, but also the sadness of knowing survivors are still dying. It’s tragic that our elected officials won’t come together to guarantee support for these victims, who inhaled cancer causing chemicals as they searched for survivors and recovered bodies. Now, thousands of families face steep medical bills and struggle every day just to survive. This is no way to treat human beings who sacrificed so much that day. Please sign my petition to make sure 9/11 responders and victims are supported by the September 11th Victim Compensation Fund after they sacrificed everything.
Petition to Pennsylvania State House, Pennsylvania State Senate, Pennsylvania Governor
Price cap on insulin in Pennsylvania
In Pennsylvania, insulin costs $270 a vial - a prohibitively expensive price for many diabetics. This vial lasts a month at most for many diabetics. Others require three or more vials per month, skyrocketing the price up to $1000 a month for something they need to survive. However, pricing elsewhere shows that this high cost is not necessary. Canada’s price for insulin is $90, and Colorado recently passed an insulin price cap of $100 per month. It's time for Pennsylvania to join Colorado in passing a price cap on this life-saving drug. Sign and share this petition today to ask Pennsylvania state legislators to take a stand for those with diabetes by instituting an insulin price cap. Because of the incredibly high cost of insulin and other expensive supplies to handle their diabetes, many diabetics are forced into dire situations. Many diabetics have resorted to rationing insulin, risking their lives every day because they can’t afford to pay for their next vial. People are forced to choose between the insulin they need to survive, and keeping a roof over their head and food on the table for their families. I know firsthand how stressful paying for insulin can be. My girlfriend has Type 1 diabetes, and worries constantly about whether her insurance will continue to cover the costs of her insulin and related supplies. People’s lives shouldn’t be put at risk because the insulin they require to live isn’t deemed “necessary” by insurance. The insulin price cap in Colorado has shown that it’s possible for states to take control of outrageous insulin pricing and as a result, to save lives. It’s time for Pennsylvania to join them in protecting Pennsylvanians with diabetes from avoidable health risks. Please sign this petition to urge Pennsylvania state legislators to save lives with an insulin price cap.
Petition to Premera Blue Cross, Starbucks, Jay Inslee
Premera Blue Cross: My daughter needs this life sustaining medical device
My daughter Laurie Beth Nelson needs a "gastric neurostimulator". This medical device, implanted in the stomach, will stimulate the nerves that allow the stomach to empty. Laurie's insurance company Premera Blue Cross (via her employer Starbucks) is denying coverage for this device. The device is used to treat an incurable condition called gastroparesis, where the stomach no longer empties regularly, causing nausea, vomiting, and dehydration. Because Laurie has received a kidney-pancreas transplant, a feeding tube is not optional due to the risk of infection. There are no medications to treat this disease. The constant nausea and frequent vomiting that she experiences as a result of the gastroparesis are making it difficult for her to absorb her transplant medications that prevent rejection of her transplanted organs. Laurie has been admitted to the hospital monthly, sometimes weekly, for IV. hydration and medication that she cannot keep down due to nausea and vomiting. Premera Blue Cross helped cover the cost of her life-saving transplant, but refuses to cover this device which will keep it from failing. After all that Laurie has endured to stay alive, this is inconceivable, but true. Please demand that Premera Blue Cross pay for the gastric neurostimulator so that Laurie can continue her fight for a normal, healthy life.
Petition to Donald J. Trump, Department of Justice
DOJ: The Deaths & Abuse Must Stop! Improve Medical Care in Detention Centers
With an estimated 15,000 children still held in immigration detention facilities in the US, the top complaint people in detention centers have reported is medical neglect or abuse. Thousands of children have reported instances of sexual abuse. Children sleep on concrete floors, and yesterday, we learned Justice Department lawyers said children don’t need soap or toothbrushes. In the last two years, more than 22 people have died in detention centers in the United States, including six children. Most recently reported, 16-year-old Carlos Gregorio Hernández Vásquez from Guatemala died at a detention centre in Texas in May. These deaths could have been prevented with appropriate and timely medical care. Everyone deserves the right to appropriate medical care. It is imperative that the Department of Justice and President Trump address this health care crisis immediately. Sign the petition to be the voice of the voiceless in detention centers, and urge the DOJ and President Trump to improve health care conditions for migrants in detention centers.
Petition to HHS Secretary, Assistant Secretary for Health, Dr. Francis Collins, Dr. Elizabeth Unger, CFSAC , Dr. Walter Koroshetz, Vicky Whittemore
#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC
We are international medical practitioners and researchers in the field of myalgic encephalomyelitis (ME), ME advocates, patients and their supporters. We are located in the US and in other countries that are affected by US health policy. We call on the US government health agencies to accurately name, define, fund and represent the distinct biomedical disease ME which has been recognized by the World Health Organization (WHO) since 1969 as a neurological disease with the ICD code G93.3 and has been well-defined by the 2011 International Consensus Criteria (ICC). Since October 2015, the US ICD-10-CM classifies ME with the same neurological code, G93.3, as the WHO ICD. We demand the US Department of Health and Human Services (HHS) and all its agencies: Adopt ICC for diagnostic purposes Adopt ICC for research purposes Use ICC on all HHS and all HHS agency websites and all educational materials created by or for HHS and its agencies Educate medical practitioners to use the IC Primer for diagnosis Disseminate the IC primer to educate medical practitioners on testing and treatment Insist that ME researchers use ICC for their research funded by HHS or HHS agencies The Problem: ME has appeared in 50+ outbreaks worldwide and was first named and defined by Dr. A. Melvin Ramsay after a massive outbreak in 1955 in the Royal Free Hospital in London. The disease also appears in the sporadic form and is neurological in nature with immune dysfunction, muscle weakness (including paralysis) and pain as well as affecting multiple body systems. It renders most afflicted unable to work – many become house or bed bound. Severely affected patients are left isolated, unable to tolerate human interaction and often require 24/7 care for basic needs. Currently, there is no FDA approved treatment or cure. In an attempt to mystify and marginalize this severely debilitating disease, government health agencies have misrepresented ME as part of an ill-defined chronic fatigue syndrome (CFS) (Reeves’, Fukuda, Oxford). The latest attempt at obfuscation by the US Department of Health and Human Services (HHS) has been sponsoring and adopting the recommendations by the Institute of Medicine (IOM) (now called the National Academy of Medicine) to use the name Systemic Exertion Intolerance Disease (SEID) and the IOM/SEID criteria. The IOM/SEID definition does not require any neurological or immune dysfunction symptoms and because of its lack of specificity will include many who do not suffer from ME. Research by Dr. Leonard Jason’s group at DePaul University, Frank Twisk, and Asprusten et al. has shown that the IOM/SEID criteria do not define the distinct neuroimmune disease ME as described in the medical literature, classified by the WHO and defined by the ICC. Research affirms that unlike the ICC, the four required subjective symptoms of the IOM criteria are commonly found in many chronic diseases and are not unique to any identifiable disease. In addition, the IOM/SEID criteria lack exclusions for conditions with similar symptoms that are typically found in disease definitions. As a result, the IOM/SEID criteria select a broad, diverse group of people without a common underlying pathology. Research by the DePaul group has found that the IOM criteria increase the prevalence of Fukuda CFS almost three times from 0.42% to 1.2% – or about 4 million people in the US alone. Only a small fraction of that group will be people with ME – an estimated 10 to 20 percent. Many in that broad group will be misdiagnosed with IOM/SEID while they actually suffer from different conditions with some similar symptoms. The confusion caused by the co-mingling of ME and non-ME patients will result in harm to people with ME (#PwME) through the recommendation of inappropriate treatment – as well as to all of those who don’t have ME but are misdiagnosed. Moreover, the use of the IOM/SEID criteria in research (which is already happening) will impede meaningful scientific progress by selecting patients for ME research who do not have the disease ME. We, therefore, reject the IOM recommendations and object to their implementation; SEID does not accurately name, and the IOM/SEID criteria do not explicitly define the distinct disease ME. We further object to the reference by HHS and its agencies in their educational material or otherwise, to the IOM/SEID criteria concerning ME. The government’s malfeasance has already caused too much suffering and premature deaths in over three decades. We will not stand by in silence while more of this whitewashing and harm take place. The time to act is now! We demand HHS adopt myalgic encephalomyelitis as classified by WHO and defined by the ICC for diagnostic and research purposes and all education materials created by or for HHS and its agencies now! References: IOM- Report Guide for Physicians ME-ICC diagnostic and research criteria Note: This includes atypical ME which requires fewer symptoms. IC Primer for Medical Practitioners Chart comparing IOM/SEID and ICC criteria ICC Questionnaire “What is it? Do I fit the Criteria?” Jason et al. June 2015 "Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease." Jason et al. July 2015 "Reﬂections on the Institute of Medicine’s systemic exertion intolerance disease.” Jason L.A. September 2015 “Patients battle for justice.” Frank N.M.Twisk April 2015 “A critical analysis of the proposal of the Institute of Medicine to replace Myalgic Encephalomyelitis and Chronic Fatigue Syndrome by a new diagnostic entity called Systemic Exertion Intolerance Disease.” Frank N.M. Twisk February 2016 “Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward.” Asprusten et al. March 2018 “Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility.”
Petition to Governor Tom Wolf, Attorney General Josh Shapiro, PA General Assembly
Tell our public officials to ACT to protect health care access for all.
To Governor Tom Wolf, Attorney General Josh Shapiro and the General Assembly: UPMC and Allegheny Health Network facilities were built on the backs of our residents through our dollars and their exemptions from taxes as non-profits. But after June 30, many Western PA residents will be shut out of one of our regional health care networks. Seniors and cancer patients are just the latest to be held hostage by the “divorce” of our local health care giants. We have reached the point at which local residents are at risk of permanent harm, and where Western PA residents are second-class citizens of our Commonwealth deprived of the freedom of choice of provider enjoyed in the rest of the state. Action must be taken. We believe that every local resident deserves access to the hospitals and doctors that serve them best, regardless of their insurer. These entities must be held to their commitments as tax-exempt “charities” to serve the public. We urge you to ACT to protect health care access for our families and neighbors.
Petition to Elizabeth Warren, Jill Schupp, Terry Kilgore, U.S. Senate, Roy Blunt, Dan Brown, Kathy J. Byron, Lee Ware, Mike Cunningham, Timothy Hugo, Bill Eigel, Jason Holsman, Daniel Marshall, III, Jacob W Hummel, Robert B. Bell, Israel D. O'Quinn, Jamilah Nasheed, Bob Onder, Ron Richard, David E. Yancey, John Joseph Rizzo, Caleb Rowden, David Cameron MP, Margaret B. Ransone, Dave Schatz, Scott Sifton, Wayne Wallingford, Michael J. Webert, Paul Wieland, Richard C. Shelby, Doug Jones, Lisa Murkowski, Dan Sullivan, Tony O. Wilt, Jeff Flake, John Boozman, Tom Cotton, DIane Feinstein, Kamala D. Harris, Michael F. Bennet, Cory Gardner, Richard Blumenthal, Christopher T. Head, Thomas R. Carper, Christopher A. Coons, Bill Nelson, Marco Rubio, Johnny Isakson, David Perdue, Brian Schatz, Mazie K. Hirono, Mike Crapo, James E. Risch, Richard J. Durbin, Tammy Duckworth, Joe Donnelly, Todd Young, Jeion A. Ward, Joni Ernst, Pat Roberts, Jerry Moran, Mitch McConnell, Rand Paul, Bill Cassidy, Mark L. Keam, Susan M. Collins, Angus S. King Jr., Benjamin L. Cardin, Chris Van Hollen, Elizabeth Warren, Eileen Filler-Corn, Debbie Stabenow, Gary C. Peters, Amy Klobuchar, Tina Smith, Roger F. Wicker, Cindy Hyde-Smith, Jon Tester, Steve Daines, Deb Fischer, Benjamin Sasse, Dean Heller, Catherine Cortez Masto, Jeanne Shaheen, Margaret Wood Hassan, Robert Menendez, Cory A. Booker, Tom Udall, Martin Heinrich, Charles E. Schumer, Kirsten E. Gillibrand, Richard Burr, Thom Tillis, John Hoeven, Heidi Heitkamp, Kaye Kory, Joseph C. Lindsey, Lamont Bagby, Ron Wyden, Jeff Merkley, David J. Toscano, Steve E. Heretick, Jack Reed, Michael P. Mullin, Lindsey Graham, Tim Scott, John Thune, Mike Rounds, Lamar Alexander, Bob Corker, Jeffrey M. Bourne, Ted Cruz, Orrin G. Hatch, Mike Lee, Patrick J. Leahy, Bernie Sanders, Mark Warner, Tim Kaine, Patty Murray, Maria Cantwell, Joe Manchin III, Shelley Moore Capito, Ron Johnson, Tammy Baldwin, Michael B. Enzi, John Barrasso, President of the United States, Maria Chappelle-Nadal, Ann Wagner
Stop Forcing Mail-Order Pharmacy as the Only Option of Coverage
Patients' lives depend on choice. **Since starting the petition, I have realized that there are many issues other than temperatures with forced mail-order pharmacy. Mail-order pharmacy is very loosely regulated. There are life-threatening delays, lack of face-to-face relationship with pharmacists for people with chronic conditions, and rapid closures of our independent pharmacies; although, a recent study showed people prefer independent pharmacy (2018, Gill). *************Our Story************* Our son, received a life-saving liver transplant at the age of 2 from a 3-year-old little girl. His life depends on the potency and effectiveness of chemotherapy/immune suppression medications every 12 hours to prevent his body's immune system from fighting off his transplanted liver. In the past mail-order delivered his liquid oral medications in nothing but a plastic envelope on a 102-degree day on a hot enclosed not temperature controlled UPS truck. Shortly after, he went into liver rejection which could have resulted in complete liver failure or death. I speculated that the medication could have been too weak after the delivery of medications in high heat. I vowed to never again risk his life with mail order pharmacy. Recently, we were mandated/forced to only use mail-order pharmacy in order to receive coverage for his life-saving medications. The package arrived in only a bag on a hot day without an ice pack. The hot non-temperature controlled enclosed delivery truck can reach temperatures up to 170 degrees. His labs elevated again afterward. My son wants to know, "Why would they do that?" I contacted the manufacturer, who performs the testing stated that both of my son's medications should be discarded and considered less potent once stored above 86 degrees as higher temperatures and freezing could both result in lower potency. Liquid medication is the most harmed by the mishandling of medications outside of the manufactures temperature storage guidelines. I contacted the mail-order pharmacy who refused to replace or take back the medication. They said the law & USP Pharmacopoeia allows them to ship up to 104 degrees, although the manufacturer states it is not proven safe at these temperatures. However, I have received communication from USP Pharmacopoeia who writes guidelines for storage, and they also said that the mail order pharmacy should follow the manufacturer's guidelines of 59-86 degrees for storage. Again, the trucks reach up to 170 degrees which is much hotter than 104. I contacted the FDA, who states that the mail order pharmacy should be using the manufacturer's guidelines that have been proven safe..However, since the mail-order pharmacies are regulated loosely by the State Board of Pharmacy, not the FDA there was nothing that the FDA could do. I made over 30 calls to the insurance company begging for them to please let us pick my son's medications up at the local pharmacy at which they are filled. My son's physician wrote a note/appeal as his transplant team has stated that they have tried to voice their concerns about this issue with their pediatric/child patients and no one is listening! The insurance company still denied the doctor's appeal for us to pick up my son's medications in the safest way. It was not until the Media became evolved that the insurance company budged. I felt helpless and have united with many other pharmacists, physicians, patients, mothers and fathers, and caregivers who feel the same way. Helpless. Mail-order of prescription drugs should be a choice, not the only option of coverage. Mail-order pharmacies may appear to save money, but when my son ended up in the hospital after taking medications that could have been compromised by having lower potency, the cost of the rejection was thousands of dollars. If his liver would have fully failed, the cost of his liver transplant for just 5 days (he was in the hospital for 5 weeks) was over $1,000,000. The lax regulation and oversight may save money on prescription drug plans but may come at an increased cost to the health plan itself. Also, keep in mind the endless waste of medications that automatically are sent regardless of whether or not patients need them. Also, people with chronic, complex conditions, should always have the option of face to face interaction with a pharmacist who knows their complex needs and medical history. The pharmacist and patient relationship is crucial to the successful outcome of the patient's overall health. Taking this away is harmful to patients and be more costly to our already stressed healthcare system. Another important fact. Mandatory mail-order programs are discriminatory. It is estimated that 40% of the homeless are disabled. How is mandatory mail order fair and working for them as they may not have an address and not even know where they will be from day to day? Only allowing mail-order pharmacy for coverage is unethical and irresponsible. I share stories on my social media sites every day of patients who are suffering from lack of choice. We need your help to make mandatory mail-order an option, not a mandate. YOUR URGENT SUPPORT WILL SAVE LIVES! THANK YOU!! WE APPRECIATE ALL OF THE SUPPORTERS, CAREGIVERS, & PATIENTS. Thank you, Loretta Boesing, Founder of Unite for Safe Medications You may make a tax-deductible contribution to support our advocacy here Email: firstname.lastname@example.org Facebook Page: Issues with Mail Order Pharmacy @justamomwholovesherson Twitter: @BoesingLoretta The greatest way that you can help is by sharing this petition & gathering 2-3 people in your community who are having issues and speak to your legislatures. Reference: Gill, Lisa L. “Consumers Still Prefer Independent Pharmacies, CR's Ratings Show.” Product Reviews and Ratings - Consumer Reports, 7 Dec. 2018, www.consumerreports.org/pharmacies/consumers-still-prefer-independent-pharmacies-consumer-reports-ratings-show/
Petition to Environmental Protection Agency
Ban Asbestos in the US Now, Without Loopholes or Exemptions
My daughter was just 10 years-old when my husband, Alan, was diagnosed with a cancer caused by exposure to asbestos, a deadly material which is still being used in the U.S. today. Families like mine have fought for decades to get the Environmental Protection Agency (EPA) to ban the use of asbestos, but instead the administration allows imports and use to continue. Alan’s disease was incurable – but it was also entirely preventable. Asbestos kills an estimated 39,000 people in the US every year, yet the EPA has not banned companies from continuing to use it. They are knowingly poisoning Americans. In 2004, Doug Larkin and I co-founded the Asbestos Disease Awareness Organization to fight for families battling mesothelioma. We vowed that we would fight with all of our strength to prevent other families from going through the pain, devastation, and loss that we experienced. Emily and I were there with Alan when he took his last breaths. I lost my soulmate and my daughter lost her father because our government refused to stand up to greedy corporations. The EPA has now spent decades of time and taxpayer dollars on asbestos research. They know it is deadly, yet hundreds of tons of raw asbestos are allowed every year to be used in our country. It’s long past time that the EPA banned this deadly material once and for all. Enough is enough.