Petition to Mr. Alex Gorsky CEO of Johnson and Johnson
Johnson and Johnson: Lower the price for life-saving cancer drug IMBRUVICA
My name is Beth. My mom is fighting a rare cancer that requires her to take a drug called Imbruvica. The drug is highly effective – and extremely expensive. A year’s treatment can cost over $148,000. That’s why I started this petition to demand that Johnson and Johnson (JNJ) stop price-gouging patients who rely on Imbruvica to live. Upon gaining FDA approval, JNJ raised the price for Imbruvica to over $90 per pill. In the years since, they’ve reported that sales of Imbruvica have soared. Yearly sales of the drug are projected to reach $7.5 billion by 2022. Those are great numbers for Wall Street investors – not so great for patients struggling to pay for the drug to fight their blood cancers. Critics say the price hikes are happening because companies like Johnson and Johnson hope to rake in the profits before Congress or some regulatory body takes action to stop them. Until then, patients across the U.S. will continue to be taken advantage of by corporations that appear to care nothing for people and only for profit. We need to stand up and speak out for patients whose lives are at stake. Please sign and share this petition calling on Johnson and Johnson to immediately lower the price of Imbruvica to match the lowest global market price. It is unconscionable to allow them to continue doing otherwise.
Petition to U.S. Senate and House of Representatives
Pass the ALS Disability Insurance Access Act
The ALS Disability Insurance Access Act (S.379/H.R.1171) will waive the 5-month waiting period for patients with ALS (Lou Gehrig's Disease) before receiving benefits under Social Security Disability Insurance. Due to the progressive nature of this disease, waiting five months can be a matter of life and death. Getting social security benefits is the first step towards getting on Medicare which is sometimes the only way ALS patients can afford to live at a nursing home or get the expensive life-support equipment needed for living with ALS. When we get a significant amount of signatures on this petition, we will write letters to every member of congress who has yet to support this bill. The more people who sign this petition, the more our senators and representatives will listen to us. This petition was started by Scott Gingold, a 38-year old husband and father living with ALS. Scott is an advocate for the ALS Association and the ALS Ride for Life. He is completely paralyzed and on a ventilator for breathing, is fed through a stomach tube, and currently living at a nursing home in Commack, NY. He communicates using a computer that he controls with his eyes, which he uses to write bedtime stories for his daughter. You can help support his wife and 6-year old daughter through GoFundMe: https://www.gofundme.com/qcxq4-darby039s-daddy
Petition to Blue Cross Blue Shield
Blue Cross Blue Shield: Cover therapy treatments for Reed
Our 4 year old, Reed, has experienced developmental delays in all areas since he was an infant. A recent brain MRI has shown some neurological abnormalities. He has received speech, physical, and occupational therapies since he was a year old. He initially received therapy services from our local Early Childhood Intervention program, but began receiving private therapy services at the age of 3. He has made steady progress with consistent therapy, but it is anticipated that Reed will continue to need therapy over the years to reach his full potential. Last year, Reed was on a BCBS PPO insurance plan through my employer that covered all of his therapies through home health. He is now on a different BCBS PPO through my husband's employer as of August 2018. From August to October of 2018, this insurance plan covered a home health agency coming to Reed's daycare for his therapy. This allowed him to receive therapy while my husband and I both worked full time in order to make enough to cover the cost. Although the therapy was "covered," we are required to pay the full cost until we meet a high deductible. BCBS has recently denied more therapy visits for Reed stating that they have a policy of only covering home health visits for children who are unable to leave their house. When the therapy company asked to see this policy in writing, BCBS has been unable to produce it. During a peer to peer review with Reed's doctor, the insurance company said they would cover the visits if the home health agency billed them as "not in the home." However, BCBS has a contract with the home health agency stating they must bill the therapy as being in the home. So BCBS asked me to tell the therapy company to do something that they have a contract with the therapy company stating that they cannot do. Just 3 months ago, they covered his visits through home health. They are now trying to force us to take Reed to an outpatient facility if we want his therapy visits to count towards our deductible. We are unable to do that without one of us significantly reducing the amount we work, and therefore, our income to be able to pay for these therapies until we meet the high deductible. I believe this is a move by BCBS to keep us from meeting our deductible so that they will not have to do their part and begin paying for services once the deducible is met. They are enacting "policies" at random and suggesting billing changes that they know the therapy company cannot do as part of a game to avoid providing coverage. Home health is not solely for children who are unable to leave their homes. I am a home health speech therapist myself and none of the 20+ children I have worked with over the past year have been confined to their homes. Various insurance companies, BCBS included, have covered services for these children so that they could receive therapy and their parents could continue to work or be available to care for other children in the home while therapy was done. Additionally, BCBS has imposed a 60 visit limit for all therapies. This means that they will only allow a few months worth of therapy to count towards our deductible. It will take 47 visits for us to meet our deductible. Then BCBS will cover 13 before we will again be responsible for the full cost. Reed needs consistent, year-round therapy for years to come. Visit limits are based on the therapy model for adults recovering from strokes and brain injuries where they receive intensive therapy over a short period of time. It is RE-habilitative. Therapy for children is habilitative. They are not recovering lost skills, but gaining them for the first time. That requires more than just a few months of therapy. The combination of denying home health and an unreasonable visit limit will bankrupt our family or force us to not be able to get him the help he needs. We are not looking for a handout but just asking BCBS to provide the health coverage we are working hard to earn and pay for. Reed has been making good progress with therapy and deserves the chance to gain the skills he needs to succeed in life. Please help us appeal to BCBS not only for Reed, but the thousands of other families being put in this position by these "policies" that insurance companies use to avoid meeting their responsibility to cover services.
Petition to Biogen Idec, Michel Vounatsos, Biogen
Without Spinraza, Zahra will die
By signing this petition, you are literally saving Zahra’s life. Zahra, a 6 years old girl, has been diagnosed with a rare disease called Spinal Muscular Atrophy ("SMA"), which is a terminal, degenerative disease, that takes away a child’s ability to walk, stand, sit, eat, breathe, and even swallow. SMA is the most common genetic cause of infant death. HOWEVER, a new medication, SPINRAZA™ (nusinersen), not only can stop the disease, it will restore the previous degeneration. Unfortunately, Spinraza is VERY expensive, costing $750,000 USD! Without SPINRAZA™ (nusinersen), Zahra will die. All you have to do in order to help Zahra is to simply sign this petition requesting Biogen, the company which makes SPINRAZA™, to ease Zahra's access to this medication by either reducing the price or any other way possible to save her life. Please follow Zahra on Twitter: https://twitter.com/SaveZahraD #SaveZahra Zahra's family is working hard to save their little one, but without this drug nothing will save Zahra. To learn more about Zahra and her story please click on the link below: http://savezahrad.ir/ Dear Biogen company, please gift Zahra the compassionate use of SPINRAZA™ (nusinersen) or at lower prices before it is too late. Please support Zahra's family so that this little girl can start her treatment as soon as possible. No kid in this world deserves to be left to gradually or eventually die. Please help saving Zahra's life.
Petition to Department of Justice
Tell the Department of Justice to stop criminalizing safe injection sites
Across rural America, people are suffering with opioid addiction, but they aren’t alone. Cities are impacted too. Despite threats from the Department of Justice, the former governor of Pennsylvania and public health advocates opened the nation’s first ever safe injection site in Philadelphia. Just last year, 1,275 people in Philadelphia died of opioid overdoses - the highest rate anywhere in America. Safe injection sites can save lives while offering those struggling with addiction a window to recovery. Tell Deputy Director of the Department of Justice Rod Rosenstein to stop criminalizing safe injection sites. Philadelphia non-profit, Safe House, opened the first medically supervised safe injection site. Those struggling with opioid addiction bring their own drugs and administer it themselves, but under medical supervision. It’s controversial, but it saves lives by preventing overdose deaths. Philadelphia isn’t alone, cities across the U.S. are preparing to open safe injection sites as a way to save lives. But the Department of Justice is threatening these cities with legal action if they open these necessary facilities. Tell the Department of Justice to empower states and cities to deal with the opioid crisis. Safe injection sites open the door to rehabilitation instead of incarceration for those suffering with drug addiction. In 2017, 72,287 people died of opioid and related drug overdoses nationwide. These deaths could have been prevented. Safe injection sites offer a second chance for addicts and their families. Tell Deputy Director Rod Rosenstein to stop criminalizing addiction. Opioid addiction is a national health crisis. Criminalizing these sites will only make the opioid crisis harder to address, potentially discouraging people from seeking help for addiction. Lives are on the line. The Department of Justice needs to allow cities and states the freedom to deal with the opioid crisis. Tell Deputy Director Rod Rosenstein to stop criminalizing people seeking help for addiction. Safe injection sites can save lives.
Petition to Tim Scott, James E. Clyburn, Jay (James) Richardson
Justice and a Chance for Krista. Hop Krista's Law.
Krista was born with two brain malformations. Cerebellar Atrophy is atrophy of the cerebellum portion of her brain, the command center for balance and motor skills. Microcephally is tiny head and smaller brain. She is intellectually disabled, with accompanying diagnoses - such as processing disorder - as a result of her brain malformations. Krista also has physical limitations, including suffering from motor dyspraxia. This petition seeks to win federal mandate to afford individuals BORN with disability(ies) or becoming disabled before adulthood an opportunity, a chance, and a healthy, safe life out of poverty and/or state-run facilities. The same opportunities that we typical-abled, healthy individuals take for granted. My former husband, Krista's biological father, abandoned us in 2011 for a different life. Although I filed for divorce and it is admitted in the courtroom (public, family court records) that her father got caught up in this different life, which included paying for prostitutes, my daughter and I left the court room with no alimony, NO child support. The lack of alimony after 25 years of marriage was devastating since I am and have always been Krista's caregiver. A court of U.S. law though ordering no/ZERO child support for Krista is, well - I do not have the words. We were invited by the judge to re-petition the court - this after borrowing 22,000 for this 5 year battle - for child support and that he MAY reconsider the issue. How would I re-file when the court (explained below) awarded Krista's father everything?? I couldn't/can not re-file. Krista has struggled, since birth, with developmental delays, low/weak immune system, and non-stop infections. She overcame battles with pneumonia and cellulitis (a deadly infection) that near cost Krista her life. She fought through numerous other illnesses, physical differences - such as a leg-length discrepancy, etc., etc. Her and I fought to pick her posture up (a symptom of the atrophied cerebellum), we fought to gain words, we fought to help her take that first step. Krista has had occupational and physical therapy her entire life. Although, she is still unable to match her motor skill movement with what her mind wants and she still may jump in front of a vehicle instead of away from it, look at her now...Look at Krista perform her dance in front of the large crowd. (See link below.) Krista has come so far, please help her and all of those like her thrive. Krista deserves a solid chance to be as healthy and successful as she can be. Myself with Bi-Lateral Meniere's and my daughter with multiple disabilities, left the courtroom with no monetary award/compensation, no asset division, no health insurance. This occurred due to Krista's father's financial status and clout in the county we resided. My daughter, Krista, is disabled by state, federal and medical guidelines. Proof of disability was introduced and produced in the courtroom. These documents included "disability" findings from the federal government. Krista's father was able to dismiss these documents by simply uttering, "she is not disabled". His statement was allowed to trump and/or dismiss federal documentation of her disabilities. Her documents were ignored and thrown out. Krista was NOT allowed to speak or even present herself to the court. Krista's father (my former husband) has assets totaling over 1.5 million, owns multiple homes (including beach home) AND is president and owner of a very successful oil company (that I helped grow) with multiple locations. Krista should not be without. Without appropriate support from Krista's father, Krista loses out on medical advancement opportunities, therapies, enrichment opportunities - to name a few, and if my disease continues to worsen, we do not know what the future holds. Although Krista (post family court) now receives SSI benefits from the government, it is VERY limited. It is substantially, WELL below poverty level assistance. The court system should not have the right to oppress individuals in order to give in to power, money, bias and prejudice. A disabled individual's livelihood should not depend on the arrogance of one judge. No one should have the right to intentionally oppress any human being, by imposing - via court order - poverty on her/him. Please help Krista and others like her gain the support they need to live. Help bring change to a faulty - often purchased -judicial and family court system. Help us #HopKristasLaw (Twitter) We are on: https://www.instagram.com/karola.richardson/ https://youtu.be/_ZJnkGKiej8 https://www.instagram.com/karola.richardson/ http://www.theitem.com/stories/kto-night-for-children-with-differences,4078
Petition to Claire McCaskill, Jill Schupp, Gary Romine, U.S. Senate, Roy Blunt, Dan Brown, Mike Cierpiot, Sandy Crawford, Mike Cunningham, S. Kiki Curls, Bill Eigel, Jason Holsman, Denny Hoskins, Jacob W Hummel, Andrew Koenig, Doug Libla, Brian Munzlinger, Jamilah Nasheed, Bob Onder, Ron Richard, Jeanie Riddle, John Joseph Rizzo, Caleb Rowden, David Cameron MP, Rob Schaaf, Dave Schatz, Scott Sifton, Wayne Wallingford, Jay Wasson, Paul Wieland, Richard C. Shelby, Doug Jones, Lisa Murkowski, Dan Sullivan, John McCain, Jeff Flake, John Boozman, Tom Cotton, DIane Feinstein, Kamala D. Harris, Michael F. Bennet, Cory Gardner, Richard Blumenthal, Chris Murphy, 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, Chuck Grassley, Joni Ernst, Pat Roberts, Jerry Moran, Mitch McConnell, Rand Paul, Bill Cassidy, John F. Kennedy, Susan M. Collins, Angus S. King Jr., Benjamin L. Cardin, Chris Van Hollen, Elizabeth Warren, Ed Markey, 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, Sherrod Brown, Rob Portman, James Inhofe, Ron Wyden, Jeff Merkley, Robert Casey, Pat Toomey, Jack Reed, Sheldon whitehouse, Lindsey Graham, Tim Scott, John Thune, Mike Rounds, Lamar Alexander, Bob Corker, John Cornyn, 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 Only Choice of Coverage & Monitor Package Temperature
My son, received a life saving liver transplant at the age of 2. His life depends on the potency and effectiveness of chemotherapy/immune suppression medications 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. Hesitant, I begged for an ice pack. The package arrived in only a bag on an about 90 degree day again 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 does all of the testings for my son drugs who 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 result in lower potency. I also found out that 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 the guidelines for storage and they also said that the mail order pharmacy should follow the manufacturer's guidelines of 59-86 degrees for storage. 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. Since starting this petition, I connected with another petitioner for air conditioning of the back of UPS trucks as the trucks are not temperature controlled. Her husband went into renal failure, because the UPS trucks are hot and enclosed and temperatures reach up to 170 degrees. It's like walking into a low temp oven. When the temperatures of the outside are colder than your freezer, I'm not sure how cold the trucks are but I'm certain mailboxes and doorsteps can get in negative temperatures. 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. Mandatory mail order programs from all plan types (INCLUDING the plans that are regulated by ERISA) needs to cease until mail order pharmacies are forced to store and monitor medications during their deliveries at the temperatures tested and proven safe by the manufacturer. I would never put my son's medications in a hot non-temperature controlled environment, and shouldn't be forced to only use this option in order to get coverage for his life-saving medications. 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. Since starting the petition, many have also stated that they experience life-threatening delays in receiving their prescriptions. Medications get lost, stolen, people are going days without medications that their life depends on. Only allowing mail-order pharmacy for coverage is unethical and irresponsible. Another important fact. Mandatory mail order programs are discriminatory. It is estimated that 40% of our 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? It is crucial that All plans should include true fair coverage and reimbursements of our pharmacist. Please help! We need legislation to protect all patients by ending the mandatory mail order pharmacy coverage in every type of plan offered in the nation. We need your help to make mandatory mail order an option, not a mandate. YOUR URGENT SUPPORT WILL SAVE LIVES! THANK YOU!!
Petition to Gina M. Raimondo, Nicholas Mattiello, Dominick J. Ruggerio, Marvin L. Abney
9-1-1 for 911: Demand a better dispatch system in Rhode Island
The Rhode Island Legislature currently takes $8.4 million a year (about 60 percent) from E-911 fees collected from monthly telephone bills to balance the state budget. This misuse of E-911 fees has left our 911 service understaffed, underfunded, and unprepared to serve Rhode Islanders. The Federal Communications Commission and Representative Lancia recently directed public attention to this matter, leading to an increase in staffing. However, this new staffing only took the resources we devote to 911 from abysmal to inadequate—an inadequacy that puts the people of Rhode Island at unusual risk. Here’s why 911 funding and operations are so important for Rhode Island. At present, our 911 system lacks GPS, Emergency Medical Dispatch (a process that puts a trained nurse practitioner or physician’s assistant on the line to provide emergency medical instruction), and medical translators. Without GPS, the current cell tower triangulation system can only determine your location within ¾ of a square mile, so callers must know their exact address in order to get help. Without Emergency Medical Dispatch, callers cannot receive pre-arrival medical instruction, such as CPR. Without medical translators, the many speakers of Spanish, French, Portuguese, Cape Verdean Creole, and other languages can’t ask for help or get help coherently. If you live in the city, it’s possible to locate an address, and rescue is usually a minute away. However, it’s more difficult for people in rural areas to accurately describe their location. Even with some of the best Rescue and Ambulance Corps in the state, the response times in rural areas are often 10 to 15 minutes – a response time imposed by distance. Despite fantastic EMTs, paramedics, and other volunteers, 10 to 15 minutes can be the difference between life and death in cases of major trauma or cardiac arrest. Having someone on the phone who can talk a bystander through CPR or other lifesaving techniques can be just that – lifesaving. If you speak another language, there is nothing more terrifying than needing emergency help and not being able to communicate. This language barrier can prove deadly for non-English speakers, but it can be easily fixed with a medical translator on the line. So, when the legislature scoops money from EMS, they have been scooping the difference between life and death for Rhode Islanders. In states where there is Emergency Medical Dispatch, the survival rate from a cardiac event outside of the hospital is 50 percent. In Rhode Island, it is 10 percent. We can and must do better than this. It’s time for Rhode Islanders to stand up together and demand a better EMS system. We’re paying for it. Let’s get the decent treatment we deserve.