Petition to U.S. Senate, U.S. House of Representatives
Pass the STAR Act for my daughter Rhyan, a 6-year old cancer survivor
The petition below comes from Brad Loos, a volunteer with the American Cancer Society Cancer Action Network whose daughter was diagnosed with cancer. It’s like a bomb that’s dropped on you. My daughter Rhyan went from playing in the cul-de-sac to being diagnosed with stage four cancer. All in 48 hours. Rhyan had always been outgoing and loved school. When she was five years old, we started noticing that something was off with her and we weren’t sure why. Then she started limping on and off, so we took her to the doctor. Multiple doctors and many tests later, we found out that Rhyan had stage four neuroblastoma, or in other words, cancer all over her body. Rhyan was treated at Sloan Kettering in New York City, far from our Missouri home. Even though Sloan Kettering is on the cutting-edge for cancer treatment and research, it was scary. With cancer, and with childhood cancer in particular, there are so many unknowns. The doctors don’t know what’s going to happen. Our kids are the guinea pigs, and while we’re learning more every single day, we still just don’t know. For a while, Rhyan was doing well. There was no sign of cancer. Months later, she started having headaches, and we learned that the cancer had come back. This time it was a brain tumor. So, we started the whole thing again: surgery, chemo, radiation, immunotherapy. More than 14,500 children will be diagnosed with cancer this year. The survival rate for kids with cancer is going up every day, but there’s still too much we have to learn. We need to know more about the causes of cancer in children and how to treat it. Treatments we’re currently using often have long-term side effects on kids. Too often, we’re putting kids’ lives at risk to save their lives from cancer. We can – and must – do better than that. Today, Rhyan is doing well and there is no sign of the disease in her body. But she still has side effects from the treatments. She’s going to wear hearing aids for the rest of her life because of the treatments that saved her life. Every time she gets sick, we worry the cancer has come back. You can see the impact in other ways, too. My daughter is no longer as carefree as her friends. Kids who suffer from cancer lose a lot of their childhood in the process. Congress will be voting on the STAR Act sometime soon – possibly within days of you reading this. The STAR Act is the first step to getting more dedicated funding for childhood cancer research. It also allows for better sharing of childhood cancer data among doctors and medical systems. Because when a place like Sloan Kettering learns something new, our local Missouri hospital should know about it. We still have a long way to go in terms of understanding pediatric cancers the way we understand adult cancers. Please sign this petition and tell Congress to take the next step in making this happen. Pass the STAR Act immediately.
Petition to Dianne Feinstein, Kamala Harris, Ray Leclerc, Jerry Brown, Boeing, Senator Henry Stern
No more kids with cancer: clean up the Santa Susana Field Lab
When my daughter Grace Ellen was diagnosed with a very rare form of cancer, at age four, I thought that our family had the worst, most devastating luck. But after spending months in the hospital with her, we learned that she was one of 50 children who may have been poisoned by one of the worst nuclear meltdowns in America. Sign to demand that the Department of Toxic Substances Control (DTSC) safely and completely clean the Santa Susana Field Lab and prevent any more children from getting cancer. Grace Ellen’s form of cancer is incredibly aggressive. At age four she was put on several clinical trials, had ten times the normal amount of chemotherapy, and spent two years fighting her cancer. A year and a half later her cancer came back. Today she’s inpatient again, having finished more radiation and intense chemotherapy, and is healing from a bone marrow transplant. She’s addicted to morphine, unable to eat or drink, and is fighting for her life in the hospital isolation floor. It haunts me to know her cancer might have been avoidable. She, like the other 49 children, grew up within 20 miles the Santa Susana Field Lab, land which was developed in the 1940s to conduct nuclear research. In 1959 an uncontained partial meltdown of a sodium reactor caused such a devastating radiation leak that many consider it to be the worst nuclear disaster in U.S. history –and it was completely covered up for years. Our community has up to 60% higher cancer rates, we have decades of EPA reports to prove it. But the Boeing Company, who partially owns the site, is proposing that the land be open to families for recreational use, even while the disaster has still not been cleaned up. It is the Department of Toxic Substance Control’s job to clean up this mess, but they aren’t taking any meaningful action. Instead they released an Environmental Impact Report that proposes to leave vast amounts of the radioactive and carcinogenic waste on site permanently. They know our children are sick and dying, but Boeing doesn't care. They care about stockholders and profits more than people, and the government isn’t doing anything to stop them. I will protect my children even if I have to tear down mountains with my bare hands – and I am one of many parents fighting for our kids. To win this, we need our nation to stand with us to demand that DTSC clean up this disaster once and for all. Will you join us? #SantaSusana
Petition to President of the United States, Donald Trump
Turn the White House ‘Gold’ for kids with cancer
Did you know that every 2 minutes, a child somewhere in the world is diagnosed with Pediatric cancer? A normal childhood comes to a halt for these kids. And each day in the U.S., 7 families have to bury their brave, beloved children who’ve lost the fight. I was one of those people, losing my beautiful, brave son Mathias to cancer. Childhood Cancer Awareness month is coming this September. I’m asking the President of the United States to light the White House Gold, for one night, to show support for the kids fighting the battle of their lives. It will help us remember the children who’ve lost their battles with cancer -- children like my son Mathias. Will you help me? The White House has been lighted up to recognize cancer and significant milestones in the past. Seeing the people’s house lit up is a moving experience, one shared across social media and on the news. More importantly, it shows kids fighting cancer they are not alone and their country supports. Please sign and share this petition telling our President to turn the White House gold for all the children battling cancer across our nation today. #TeamMathias #MathiasStrong https://m.facebook.com/groups/322030827926363
Petition to Tim Scott, Lindsey Graham, U.S. Senate
Pass the Childhood Cancer STAR Act
H.R. 820/S. 292, The Childhood CancerSurvivorship, Treatment, Access, and Research (STAR) Act of 2017House Sponsors: Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA), G.K. Butterfield (D-NC)Senate Sponsors: Senators Jack Reed (D-RI), Shelly Moore Capito (R-WV), Chris Van Hollen (D-MD), Johnny Isakson (R-GA) In the United States, cancer remains the leading cause of death from disease in children. There are more than 100 different types of childhood cancer, and many still have unacceptably low cure rates. Most funding for childhood cancer research comes from the National Cancer Institute (NCI), but only 4% of the NCI budget is dedicated to pediatric cancer research. The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act is the most comprehensive pediatric cancer bill ever taken up by Congress. It expands opportunities for research, improves efforts to identify and track incidences and enhances the quality of life for childhood cancer survivors. Our goal for the month is 1290 signatures - one for every child diagnosed with cancer during that time.
Petition to Politicians, Governments, Medical Associations
PETITION FOR BRIGGS FOR A NEW ERA IN MEDICAL CARE
My wife Briggs would still be alive if not for all the harm that was done to her in the course of her treatment. We had begun turning around her cancer when I lost her to medical errors in what was meant to be a short emergency hospital stay. I wrote a book about her cancer journey, "Briggs: Love, Cancer, and the Medical Profession". A sister petition to this one, the Petition for Briggs for Cancer Immunotherapy for All, has been signed by 30 stars, legends, eminent professors, and a founder of Stand Up to Cancer. A recent study in the British Medical Journal confirmed one of my chapter titles, that medical errors are still the third leading cause of death in the U.S. I took the shot above very early in the morning. All Briggs cared about was that a nurse had just given her a warmed blanket. Her loop colostomy had failed. She was about to have a revision surgery, a more radical end colostomy which put her through hell for months to come with a 24-hour-a-day discharge. Loop colostomies regularly fail. There are three methods to avoid it. In going over Briggs's medical records for the book, I found her doctor had used none. He's a premier surgeon at one of the most prestigious cancer centres in Manhattan, if not the world. A retired nurse wrote in a review of the book, "We need this type of information long before something happens because in the throes of it one becomes so drained they cannot decide which way to go!!" A doctor calls it "a major eye opener." He messaged me separately to say it's overturned his approach to medicine, and told me of saving a boy's life by intervening with a colleague. I quote a Harvard professor's estimate that between 90 and 99 percent of side effects go unreported. The FDA relies on those reports to determine the ongoing safety of a drug once it's on the market. The side effects of an anti-anemia drug Briggs was given just one time put her in the hospital for 30 days. I later found there'd been a Congressional hearing on the safety of it. Briggs had almost died even after the paramedics came. A University of Minnesota study found that morphine increases sensitivity to pain (hence the constant increases) and can cause tumors to grow. The State of Ohio has filed lawsuits against five major drug manufacturers, accusing them of misrepresenting the risks of other prescription opioids such as OxyContin. (One of those companies is Johnson & Johnson. It's now lost four cases, with 2400 more pending, over claims their talcum powder has long caused ovarian cancer.) I cite a study co-funded by the National Institutes of Health and led by a team at the University of California, San Francisco. Depending on the facility, it found that CT scans can deliver up to 13 times their already-high base radiation. There are dozens more examples in the book. Another reader wrote, "My own experience, and the unflinching witness of Paul Sanderson's enraging, moving, generous tribute to his wife, communicate that damage comes far more easily than healing when principles and intentions become distorted…So, read this book as a warning, as an opportunity, as a privilege."Susan Sarandon writes, "He's giving us the tools to avoid the 'died of complications from' in too many patients' obituaries at the same time as setting out to usher in a new era in cancer twenty years ahead of time. Let's join him in the fight."Please join me in calling for a new era in medical care and treatment, including by extension the pharmaceutical industry. We need standardized procedures; a new approach to the approval and dispensing of drugs; far more analysis of their effectiveness and safety compared with well-documented natural alternatives; patients and caregivers being given crucial, comprehensive information; the list goes on and on, including addressing such issues as in a recent study in the Annals of Internal Medicine. With the U.S.'s multiple insurer system, it found that for every hour physicians were seeing patients, they needed to spend almost two additional hours on paperwork. I've written a new article about the 250,000 Americans a year dying from medical errors, with more on Briggs's journey: I Didn’t Think One Person Had This Many Tears. At the end, I ask patients and caregivers to use #ThisManyTears and the link to the article to add their stories on social media. This petition is meant to begin the conversation in earnest. Paul
Petition to US/EPA And Department Of Toxic Substance Control, Heidi Harmon, Mayor, Jerry Brown Governor - California
Ban Oil/Gas Fracking in San Luis Obispo County, CA & underground pipeline in Nipomo, CA.
Dear Governor Jerry Brown, Major/ Board Of Supervisors Of San Luis Obispo, United States Environment Protection Agency And Department Of Toxic Substance Control Fracking is an inherently dangerous threat to our air, water and health. Ban Oil/Gas fracking now in San Luis Obispo County, CA. Why is this important?Fracking is a toxic method of oil and gas extraction that involves blasting vast quantities of water and toxic chemicals deep underground and it's endangering countless Californians' health, safety and livelihoods. Big Oil/Gas has plans to massively expand fracking in a huge section of the state roughly 1,750 square miles from Southern to Central California, from Modesto to San Diego County--putting our precious water, our farms, and our health at risk. In the last ten years, fracking has expanded rapidly in states like Pennsylvania, North Dakota, Texas and Colorado. Residents living near fracking operations suffer from constant noise and light pollution, endless diesel truck traffic, toxic spills, contaminated water, dangerous air pollution, increased crime, and falling property values. If fracking continues to expand, it could spell ruin for California farmers. Appallingly, even in times of drought, the fracking industry regularly outbids farmers for water rights, increasing the price of water and directly jeopardizing their livelihoods. And the toxic chemicals and heavy metals associated with fracking operations can contaminate the soil, air and water, leach into crops, and kill livestock. But despite the clear risks posed to Californians by the oil industry's plans to frack our state, legislation that would have placed a moratorium on fracking died in the Assembly and Governor Brown appears eager to encourage the expansion of this toxic industry. That's why we have to take matters into our own hands and ban fracking at the local level. Cities and counties in California have broad authority to ban fracking, and we should pressure our elected officials to step in where the state government has so far failed to act. Local bans on fracking may also be one of the most effective strategies for winning change at the state level. If a wave of cities and counties in California reject fracking, it will put increased pressure on Governor Brown to ban fracking in all of California. Hundreds of communities across the country, from New York and New Mexico to Pennsylvania, Ohio and Colorado, have successfully passed local bans or moratoriums on fracking in order to protect their homes and pressure state officials to act. Ban underground pipeline project construction at the public park in Nipomo, CA. Now it's up to us. Please sign my petition and help me ban fracking in our community. Together, we can pressure our elected officials to act. Sources: San Luis Obispo County Pending. 7/2017 Santa Barbara Becomes First California City to Pass Resolution Against Offshore Oil and Gas Drilling. 7/26/2017https://www.ecowatch.com/santa-barbara-offshore-drilling-2465777011.html Monterey County is California’s first major oil-producing county to ban fracking. 11/29/2016 https://www.foodandwaterwatch.org/impact/monterey-county-california%E2%80%99s-first-major-oil-producing-county-ban-fracking Alameda Becomes 5th County in California to Ban Fracking. 7/20/2016 https://www.ecowatch.com/alameda-county-becomes-fifth-in-California-to-ban-fracking-1933900702.html What Banning Fracking in Butte County Taught Me about Grassroots Organizing. 6/17/2016 https://www.foodandwaterwatch.org/impact/what-banning-fracking-butte-county-taught-me-about-grassroots-organizing Election win puts rural San Benito County on the anti-fracking map. 11/29/2014 http://www.latimes.com/local/california/la-me-San-Benito-fracking-20141129-story.html Mendocino County is first California community to enact a ban. 11/5/2017 http://www.ohio.com/blogs/drilling/ohio-utica-shale-1.291290/mendocino-county-is-first-california-community-to-enact-ban-1.538340 Beverly Hills Becomes First City in California to Pass Fracking Ban. 4/24/2014 https://www.ecowatch.com/beverly-hills-becomes-first-city-in-california-to-pass-fracking-ban-1881899667.html
Petition to Scott Gottlieb MD, Jeff Shuren, Sybill Storz, Managing Director, Hal Lawrence, William Maisel MD
Health Alert: Many Women Have Died Unnecessarily Because Dangerous Cancers of the Uterus and Ovaries Are Being Spread using MORCELLATORS. Stop MORCELLATION in Minimally Invasive Gynecological Surgery.
Friends of the Public, Many women have been harmed and have died prematurely or unnecessarily because of a routine but avoidable gynecological practice known as MORCELLATION. This world-wide practice has devastated many families for well over two decades now. More than 600,000 hysterectomies are done in the US every year. By the age of 70, one out of every three American women will have had a hysterectomy. About 90% of these surgeries are done for what is presumed to be a benign condition called fibroids. More and more of these surgeries are done with minimally invasive techniques. Usually, to get the uterus out of the body using the "minimally invasive" technique, it is cut into small pieces with a machine called a morcellator. However, a devastating problem happens if in fact the woman did NOT have fibroids – but if she actually had cancer. Unfortunately, the tests that are done before a hysterectomy do not identify these cancers well. Many gynecologists don't even bother getting any tests. In fact, morcellating cancer spreads the cancer inside the woman’s body. This is called ‘up staging’ the cancer. It is important to understand: 1) The average life span following accidental morcellation of sarcoma is only 24-36 months. 2) Only 15% of woman who have leiomyosarcoma (LMS) that has spread (stage 4) will be alive after 5 years. 3) Women with sarcoma who are morcellated are about 4 times more likely to die from sarcoma than if they had not been morcellated. This is an avoidable disaster. This problem has been recognized for more than two decades. A review of the literature, by the Food and Drug Administration, revealed that 1 in 350 women who go for fibroid surgery actually have sarcoma. This means that everyday 2-5 women in the US – and more around the world are susceptible to having a deadly cancer spread because of morcellation. This catastrophic problem has happened in my family and we are fighting to stop this dangerous activity called morcellation. A chance of 1 in 350 for such a devastating outcome is much too high to accept. Women should be told the truth and the practice should stop. Please help us bring an end to spreading cancer with morcellation. This is a totally AVOIDABLE practice. People need to understand their options, which include hysterectomy through a mini-lapartomy incision or trans-vaginally – but – up until recently, most women never heard anything about morcellation or about the possibility of cancer upstaging. And, if they do, this risk is down-played by most minimally invasive gynecologists. We can tell you based on our experience, when cancers are spread by morcellation, the outcomes can be devastating - because the cancer is upstaged. We need your help. Please sign our petition so we can get the word out. We want the American College of Obstetricians and Gynecologists and the American Board of Obstetrics and Gynecology to change this "standard of care" by ending the needless waste of life caused by spreading cancer with morcellation. For more information and original references see: http://journals.lww.com/oncology-times/blog/onlinefirst/pages/post.aspx?PostID=188 ) (also see:http://www.ncbi.nlm.nih.gov/pubmed/23189178) (also see:http://www.ncbi.nlm.nih.gov/pubmed/21565389). The attached video below shows an example of morcellation https://www.youtube.com/watch?v=nPkKw0j-aXE The following companies manufacture and distribute uterine morcellator devices: 1) ETHICON: Gynecare morcellator 2) Storz: Rotocut Morcellator 3) Richard Wolf Medical Instrumentation Company 4) LiNA: LiNA Xcise Cordless Laparoscopic Morcellator 5) Blue Endo MOREsolution Tissue Morcellator 6) Pneumoliner Power Morcellation System by Olympus Corporation. Intuitive Surgical's Da Vinci Robot deserves special mention, as the frequency of robotic hysterectomies performed by minimally invasive gynecologists is currently on the rise across the United States. Note that Intuitive Surgical builds and markets the DaVinci robot, which is not itself a "morcellator". However, use of the DaVinci robot almost invariably appears to require that the uterus be minced up, or morcellated, into smaller pieces inside the woman's belly cavity in order to extract from the abdomen. A clear example is shown in the following YouTube video of DaVinci being used to perform a robotic hysterectomy and manually morcellating the uterus using the endo-wrist component of the robot (morcellation is being performed at minute 5:30 of the video). https://www.youtube.com/watch?v=f6luiX6UQmg Without morcellation using equipment manufactured by Intuitive Surgical, robotic hysterectomies would, likely, not be possible using the DaVinci Robot. It is noteworthy that the DaVinci robot does not appear to have a readily available warning label advising against its use to morcellate tumors with malignant potential inside the body. The company's Chief Medical Advisor, Dr. Myriam Curet, a surgeon herself, has been informed and advised of this severe hazard in the use of DaVinci for robotic hysterectomy and the absence of a readily available warning label.
Petition to Dr.H.Bliss Murphy Cancer Clinic, The Government of Newfoundland and Labrador
Designate parking spaces close to the hospital for cancer patients receiving treatment.
There is no parking made available for cancer patients at the Dr.H.Bliss Murphy cancer clinic. What can the Cancer clinic do? • Provide a designated parking area for cancer patientswith enough spaces( we are looking for 25 spots). Use a boomgate and/or apermit system to make sure only eligible patients canpark there, and enforce it. Cars can be towed and tickets issued just like the blue zones. • Use a permit system such as windscreen stickers,swipe cards or dashboard passes, with expiry datesor color coding to show patients with currentappointments. Having a designated parking area close to the hospital for cancer patients who are receiving treatment is vital.We are fighting the biggest battle of our lives and having the stress of parking should not be one of them. I was late for an appointment at the cancer clinic because it took me 45 minutes to find a place to park.The long walk to the entrance of the hospital was exhausting.I see a lot of people who are receiving treatment at the Dr.H.Bliss Murphy cancer clinic and many are seniors.This parking problem has to be addressed because it has been a problem for these patients for years.Designated parking is needed for cancer patients and those spots need to be close to the entrance of the cancer clinic. I started this petition because many cancer patients talked about the problem with the parking and how frustrating it is to find a place to park going to the Dr.H.Bliss Murphy cancer clinic. I hope the hospital can designate an area for cancer patients close to the clinic.It would make this journey more easier on the patients. Another part of this advocacy we have voiced our concern is Smoking.It should be prohibited from the cancer clinic and the HSC.People are smoking in the entrances and then throwing cigarette butts to the ground.Take a walk in front of the cancer clinic one day and you will see just that...A beautiful garden there but sadly many butts on the ground. Even though there is an announcement stating smoking is not permitted on the grounds people still are doing just that. Hospitals and clinics should be Smoke free zones.