Petition to Dianne Feinstein, Kamala Harris, Jerry Brown, Boeing, Senator Henry Stern, Barbara Lee, Mohsen Nazemi, Julia Brownley
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 juan thomas, firstname.lastname@example.org , email@example.com , firstname.lastname@example.org , email@example.com , firstname.lastname@example.org , tjohnson@idem.IN.gov , awilloug@idem.IN.gov , email@example.com , apappas@isdh.IN.gov , firstname.lastname@example.org , email@example.com , Ppontones@isdh.in.gov , firstname.lastname@example.org , Joe Donnelly, Todd Young, Trey Hollingsworth, Environmental Protection Agency, President of the United States
Childhood cancer crisis & a toxic legacy: Tell EPA-sample for vapor intrusion into homes
"Diagnosed with terminal brain cancer at age 13 and with only 3 months and 13 days left of her tragically short life, Emma Grace Findley captured the hearts of not only her community but inspired many around the US and world. Today, we fight in her memory and are inspired by her spirit to answer why so many children in our community face this battle." - Kari Rhinehart, community leader who lost her daughter in 2014. For nearly a decade, the vibrant community of Johnson County, IN has been fighting dual battles: their rising childhood cancer rates and the frustration of their own health and environmental agencies minimizing public concern. Upon independent investigation into several local toxic legacy sites, it has become clear that there are significant unresolved issues and data gaps. Families in Johnson County and beyond may continue to be unknowingly exposed to hazardous chemicals if these are not addressed. Sign our petition urging the US Environmental Protection Agency to conduct vapor intrusion sampling of the homes in Johnson County and to reevaluate a leaking former industrial site for inclusion on the National Priorities List. RISING CHILDHOOD CANCER RATES "To see the look on his face when we get a phone call of a new diagnosis is heartbreaking. I know what is going through his mind. 'Another one? Relapse? Will I relapse?' Those thoughts are something no child should ever have to wonder." - Stacie Davidson, community leader and stepmother of Zane Davidson, who is in remission after 3 1/2 years of being treated for Acute Lymphoblastic Leukemia. The latest National Cancer Institute (NCI) data shows that the age-adjusted cancer incidence rate for children under 20 in Johnson County (22.2) is higher than the state average (17.3); even more alarming is the rates in Johnson County are rising. According to the community and local news outlets, approximately half of the children diagnosed since 2009 have lived or spent significant time in Johnson County's small town of Franklin. An investigation released by the Johnson County Health Department in December 2017 concluded that, "The difference between the observed number of childhood cancers diagnosed in Johnson County and the number expected was not statistically significant." Any objective observer can see that what is significant is elementary school children developing cancers typically seen in 60-year old adults. What is significant is that childhood cancer rates continue to rise. What is significant is the storied history of poor housekeeping practices at Johnson County sites that contaminated the surrounding environment. One critical piece that has been left out of the human health conversation has been a comprehensive investigation into child-specific exposure factors from several contaminated sites in Johnson County. Without additional sampling efforts to address fundamental data gaps, the sites and off-site areas remain incompletely characterized and the human health risk analyses reliant on assumptions. A TOXIC LEGACY The nonprofit advocacy group, Edison Wetlands Association (EWA) has investigated over 25,000 pages of confidential government reports, memos, and test results for contaminated sites in Johnson County, many of which had previously never been reviewed by the community. The EWA and its team of technical advisors have found that human and environmental impacts have not been adequately characterized at one site in particular, the former Amphenol Corporation. The former Amphenol Corporation (aka Franklin Power Products) site operated under several other owners and operators during its 55-year history in Franklin, IN. From 1963 to 1983, electrical parts were manufactured on the approximately 15 acre site, with metal hydroxide sludge, volatile organic compound (VOC) solvents and thinners (including trichloroethylene (TCE) and 1,1,1-trichloroethane), and cyanide solutions reported as some of the wastes generated, stored in tanks, and leaked directly into the ground. Some of the many poor housekeeping practices at this site included a leaking plating room floor that discharged chemicals into the subsurface, and a damaged sewer line that also drained wastewater contaminants into the surrounding environment. In a 1985 Site Assessment report, high levels of up to 19,000 parts-per-billion of TCE and 13,000 parts-per-billion of 1,1,1-trichloroethane were reportedly detected in onsite groundwater, along with a witches' brew of other hazardous chemicals. Cleanup activities, which included installation of a groundwater treatment and recovery system, under the RCRA Corrective Action program were said to be complete in December 1998. In January 2007, the Indiana American Water Company (INAWC) stopped using two drinking water wells in Franklin's Webb Wellfield due to detection of 1,2-dichloroethylene (1,2-DCE) contamination exceeding Maximum Contaminant Levels (MCLs). A third well was abandoned in 2012, and TCE above MCLs was also detected near the drinking water wells. According to the water company and its attorneys, a toxic plume containing volatile organic compounds (VOCs) had migrated from the Amphenol site to its wellfield which served approximately 50,000 people. Amphenol Corporation argued that the VOC contamination found in the wellfield had no link to its site. VOCs easily become vapors/gases, and many are toxic to multiple body systems. TCE, for example is classified by the International Agency for Research on Cancer as carcinogenic to humans by all routes of exposure. Children are especially vulnerable due to "critical windows of development" (World Health Organization) that are not present in adults. Maximum Contaminant Levels (MCLs) and other standards set by agencies often do not take into account highly sensitive populations, like children, or the synergistic effects of exposure to multiple chemicals. It is generally agreed in the academic community that there is no safe dose of a carcinogen, as "even small doses may have a relevant biological effect" (National Academies of Science, Advancing Risk Assessment). DATA GAPS THAT NEED TO BE ADDRESSED According to EWA research, the Amphenol site was evaluated for inclusion on the USEPA's National Priorities List (NPL) nearly 30 years ago in the late 1980s, when preliminary scoring worksheets were completed using the Hazardous Ranking System (HRS). The total projected score for the site (with observed release to groundwater) was calculated as 44.60, well over the threshold of 28.50 that qualifies sites for inclusion on the NPL. In 2017, vapor intrusion - a fancy way of describing toxic gases leaking into homes, schools, and other buildings - was added to the HRS criteria. Although vapor intrusion may be one pathway of children's unacceptable exposures to contaminants in Johnson County, the site has not been reevaluated using the new criteria. Vapor intrusion was first identified as a potential issue for the Amphenol site as early as December 1995, even though nearly a year before an onsite recovery system (ORS) began operating to pump and treat contaminated groundwater. A memo written by a federal USEPA hydrogeologist warned, "Contaminants may volatilize from a NAPL [non-aqueous phase liquid] source in the vadose zone or from contaminated groundwater. It is not clear whether transport of such contamination and risks to nearby residential areas were considered in the previous documents." A draft report was submitted to the EPA the following year, which "theoretically" determined that there was "little" indoor air risk to adjacent homes from groundwater seeps, as the hypothetical risk fell within the 10^-4 to 10^-6 range - meaning that it would be acceptable if 1 in 10,000 to 1 in 1,000,000 people got cancer as a result of exposure to contaminants. It was noted in the document that the model used was "limited" and that the "conclusions have not been validated with field data." Not only has the vapor intrusion risk not been comprehensively evaluated since this time, but there is no indication that the residential homes ever had actual indoor air quality monitoring performed. The most recent round of groundwater data provided to EWA shows that even in 2016, the highest concentrations of volatile organic contaminants (VOCs) were detected in monitoring wells near the residential areas adjacent to the site. This raises even more concerns as to the possibility for harmful chemicals to seep into indoor spaces or to impact private drinking water wells in the region. In accordance with EPA's Child-Specific Exposure Factors Handbook, the Amphenol site and off-site areas, including residential homes, should also be evaluated for children's and other sensitive populations' differing vulnerabilities and exposure pathways before it can be determined that human exposures are under control. As more children in the community continue to get diagnosed and families increasingly feel unsafe in their homes, it is long overdue that the agencies prioritize meaningful community involvement in investigating this site and others - and this includes sampling the 'human environment' where children live, sleep, and play. OUR VISION AND HOW YOU CAN HELP The Edison Wetlands Association (EWA) is organizing and funding the first round of sampling the homes in Johnson County to determine a) if toxic vapors are migrating from the subsurface into the homes, and b) if concentrations of select contaminants detected in the indoor air are above human health criteria. The EWA strongly requests the US Environmental Protection Agency to join the EWA in taking split-samples to most efficiently fill data gaps and adequately delineate the extent of contaminant movement into the residential areas. It is by design that EPA's mission includes protecting both human health and the environment. Furthermore, Presidential Executive Order 13045, "Protection of Children From Environmental Health Risks and Safety Risks" directs federal agencies to "make it a high priority to identify and assess environmental health risks and safety risks that may disproportionately affect children." We are calling on the USEPA to fulfill this mission and Executive Order 13045 by conducting sampling with the EWA, reevaluating the Amphenol site using the new vapor intrusion criteria, and addressing public concerns at our first meeting with the Johnson County community in June 2018. No child should have to develop cancer or lose their life because they grew up in the wrong zip code. Take action and sign our petition now - the families of Johnson County and anyone who believes children have the right to grow up in a safe and healthy environment are counting on you! For more information, visit: www.edisonwetlands.org/johnson-county-in
Petition to Greg Walden
Support DIPG Awareness: the inoperable, incurable, unstoppable tumor that killed my child.
Our 7 year-old daughter Cheyenne died after a six-month battle with Diffuse Intrinsic Pontine Glioma (DIPG) – an aggressive and incurable form of pediatric cancer. DIPG is the second most common childhood malignant brain tumor and the leading cause of brain tumor death in children. The amount of funding devoted to finding a cure for DIPG has remained unchanged in the past 30 years – and so has the prognosis. Awareness is the first step toward reaching a cure. And House Resolution 69 – calling for a DIPG awareness day – is a great first step to bringing this kind of awareness to this cruel disease necessary to fight it. Your support can help move Congress to take action. Our worlds were ripped apart when Cheyanne was diagnosed with DIPG. Everything changed in an instant. One day, Cheyanne was a typical happy-go-lucky 7 year-old. The next day, she couldn’t walk and would never walk on her own again. When we needed information and options, we struggled to find either since there is such little attention paid to the disease. There were clinical research trials with experimental treatments available to us, but our daughter was never mobile enough to participate because she wasn’t strong enough to travel. In honor of my daughter, and the many other children who’ve lost their lives to this killer tumor, we ask that you sign and share this petition asking Congress to designate May 17th as “DIPG Awareness Day” in the U.S.
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 Philippine Congress, Speaker Panteleon Alvares
KALAYAAN MULA SA KANSER : PASS A NATIONAL INTEGRATED CANCER CONTROL ACT NOW!
Cancer is a growing and serious public health concern. It is inextricably linked with the achievement of the country’s poverty reduction and development goals. Cancer incidence is increasing and is ranked as one of the leading causes of death among adults and children. In the 2015 Philippine Cancer Facts and Estimates, it reported 109,280 new cancer cases per year and 66,151 cancer deaths per year. This is translated to 11 new adult cancer cases every hour, and 7 adult cancer deaths every hour. At least 3,900 children are diagnosed with cancer every year or 11 new cases every day. It has been noted that there are at least 8 children die of childhood cancer per day. A recent report of the Philippine Statistical Authority (PSA) states that one in every ten registered deaths in the country is attributable to cancer. Since 2004, cancers have been the third leading cause of death following cardiovascular diseases; for child mortality and morbidity, cancer ranked 4th. Experts opine that the actual cancer burden and cancer mortality in the Philippine is in fact very much higher than what is currently being reported. Many more remain uncounted, unrecorded and unreported due to the absence of national cancer registries. Survival rates for the most common adult cancers (i.e. lung, breast, colon, cervical, prostate, liver) are relatively low compared to other countries in Asia and the world. For females, all cancer mortality rate, the Philippines ranks second highest among 15 countries in Asia, with 124 deaths per 100,000 population. Compared to Asian countries, the Philippines has the highest mortality rate for 2 types of cancer: breast (27 per 100,000 population) and prostate cancer (13 per 100,000 population. Lung cancer mortality rates are also high exceeding 40 per 100,000 population. For breast cancer, the Philippines also has the lowest survival (.58 mortality to incidence ratio. For childhood cancers, which now has an average survival rate of 84% in high income countries and a growing number of middle income countries, average survival rate in the Philippines is at a low 30%. Cancer is a catastrophic disease which pushes families deeper into poverty. It debilitates not only patients, but also their families and loved ones. The financial burden can be overwhelming, given that financial risk protection mechanisms are limited and patients often need to shell out money from their own pockets to pay for treatment and other costs, such as medical supplies, food, and transportation. Evidence shows that in a cohort of cancer patients, the mean out-of-pocket expenditure for cancer treatment, far exceeded the mean household income; 117 percent at baseline to 253 percent twelve months after, leading more than 56 percent of households into financial catastrophe. This does not yet factor in the staggering economic and social costs, with productivity losses for both patients and immediate caregivers. This huge out of pocket costs often deter health seeking behavior or leads to discontinuance and abandonment of treatment (i.e. voluntary stoppage of necessary treatment by patient /family) . In some areas and with certain types of cancer, abandonment or discontinuance of treatment can be as high as 75% while average treatment compliance is at a low 21%. These conditions are most observed among the poor. marginalized sectors but occurs even among the so called middle class. Incidence of cancer is projected to increase by as much as 80%, by 2030, in low resource countries like the Philippines (WHO). This will have a staggering effect on the ability and resiliency of the Philippine health system as well as its overall economy. THUS, PURSUANT TO THE CONSTITUTIONAL PROVISIONS OF ARTICLE II, SECTION 15 ("The State shall protect and promote the right to health of the people and instill health consciousness among them"), and ARTICLE 13 SECTION 11 ("The State shall adopt an integrated and comprehensive approach to health development which shall endeavor to make essential goods, health and other social services available to all people at affordable cost. There shall be priority for the needs of the underprivileged sick, elderly, disabled, women, and children. The State shall endeavor to provide free medical care to paupers") WE CALL ON GOVERNMENT TO PASS A LAW WHICH WILL EXPAND EFFORTS TO EFFECTIVELY MANAGE AND CONTROL CANCER, IN ALL ITS FORMS, BY INCREASING INVESTMENTS FOR ITS PREVENTION, EARLY AND ACCURATE DETECTION, OPTIMAL TREATMENT, AND BY ADOPTING AN INTEGRATED, MULTI-DISCIPLINARY, AND PATIENT/FAMILY CENTERED APPROACH. We ask that this law include provisions that will have the following integral elements. 1. Strengthening of Cancer Care Infrastructure and Service Delivery Networks to cover the continuum of care. Public health facilities shall be strengthened to provide services spanning prevention, detection, diagnosis, treatment, palliative and hospice care, survivorship follow up and rehabilitation. This entails (a) providing investments in health facility renovation or upgrade, (b) providing reliable supply of medicines, biologics, and other supplies, (c) training and enhancing oncology related capacities in pathology, radiotherapy, surgery, nursing care, (d) establishing clear protocols for patient navigation and palliative care, (e) ensuring proper recording and monitoring of cancer cases , and (f) ensuring that recording and monitoring extends to primary health care units. Regional Cancer Centers shall likewise be designated in strategic areas to improve access to optimal care and reduce patient costs. Robust and cost effective refer all systems among various levels of service delivery shall be institutionalized. 2. Strengthening the capacity of the Human Resources for Health in Cancer Care. A competency-based curriculum for all health care workers providing cancer care treatment and support at all levels of the healthcare service delivery system shall be created. This shall include multi-disciplinary, interdisciplinary approaches to cancer care. This will also include adoption of cost-effective teaching platforms for enhanced knowledge, skills, and attitude and implementation of health worker accreditation and certification mechanisms. 3. Strengthening the FDA to ensure the safety, quality, and efficacy of medicines, biologics, and other health technologies. The Food and Drug Administration (FDA) shall strengthen its regulatory capacity to ensure availability of safe, efficacious, quality medicines, biologics, and other health technologies for cancer patients. The FDA shall also develop policies facilitating clinical trials, supporting early access to innovative therapies and health technologies to ensure highest possible fighting chance of survival among people with cancer. 4. Institutionalizing Funding and Social Protection Mechanisms for Cancer Patients, Survivors, Caregivers, and their Families. Given the catastrophic nature of cancer and in order to ensure equitable access to treatment and care, there is a need to provide financial support to cancer patients, survivors, caregivers, and their families in the following forms: Establishment of a Cancer Assistance Fund to reduce out-of-pocket expenditures for diagnosis, treatment, follow through survivorship care and rehabilitation services. This may be sourced from pooled and integrated funds from the Department of Health, Department of Social Welfare and Development, Philippine Charity Sweepstakes Office, Philippine Amusement and Gaming Corporation, among others. PhilHealth Benefit Packages for Cancer. The Philippine Health Insurance Corporation (Phil Health) shall develop and/or expand its benefit packages to include all forms of cancer including metastatic cancers and high risk cancers in children . Social Protection Mechanisms for cancer patients, survivors, caregivers, and their families. The State, in collaboration with DOH, SSS, GSIS, PCSO, PAGCOR, DOLE, DSWD, DOLE and LGUs shall develop social protection mechanisms to support the needs of the cancer patients, survivors, caregivers and their families to reduce, if not eliminate catastrophic cost and ensure well-being. Nondiscrimination. Access to healthcare services should be provided without discrimination regarding race, religion, sex, national origin, or disability. Patients should also be free from discrimination based on their disease, with respect to both employment and health insurance accessibility 5. Establishment of a National Cancer Registry and Surveillance System and Evidence Generation. A National cancer registry and surveillance system covering all forms of cancer among adults and children shall be designed and implemented to support program decision-making. All public and private health centers, hospitals and facilities shall also observe notification protocols to alert the DOH of all cancer cases. 6. National and regional research and demonstration projects shall be conducted to generate evidence to improve policies and the implementation of the Integrated Philippine Cancer Control and Management Program (IPCCMP). 7. Strengthening Health Promotion, Information, and Education Programs. Health promotion and education activities shall be strengthened in schools and learning institutions, work places, communities, and among vulnerable, at-risk, and disadvantaged populations. A National Cancer Information Office shall also be developed to develop platforms (e.g. interactive websites) to provide comprehensive cancer information services to cancer patients, their families, the public, and health professionals. The DOH, in coordination with the Philippine Information Agency (PIA), KBP (Kapisanan nang Broadcasters nang Pilipinas) and other related institutions , shall encourage media outlets to launch a media campaign on adoption of healthy lifestyles, early warning signs and symptoms of cancer, cancer prevention and control, treatment and management, using all forms of traditional multimedia and social media. The media campaign shall maximize participation of advertising agencies in developing behavior change communication materials that would promote cancer information and encourage adoption of health lifestyles among the public. 8. Establishing National Cancer Screening Programs. Identifying cancer at the earliest possible stage means that treatment is less costly, cure is most likely, survival rates will increase and health outcomes will become more positive. We envision that creation and passage of this law will ensure that a diagnosis of cancer will no longer be akin to a a death sentence and that Filipinos will be able to fight and survive cancer just like citizens of other countries in Asia and the world. Increased survivorship and improved health outcomes for Filipinos with cancer will contribute to our countrys achievement of Sustainable Development Goal 3 (Reduce mortality from cancer by at least 30%) as well as the realization of our countrys health and development priorities. KALABANIN ANG KANSER TUNGO SA TUNAY NA KALAYAAN! CANCER COALITION PHILIPPINES The Cancer Coalition Philippines (CCPh) is a national coalition of cancer patient support organizations, health care providers, cancer advocates and champions engaging and working with government, policy makers, private sector, civil society, and international development partners. This petition is supported by the following: HOSPICE PHILIPPINES I CAN SERVE FOUNDATION CANCER WARRIORS FOUNDATION CAREWELL COMMUNITY FOUNDATION PHARMACEUTICAL AND HEALTHCARE ASSOCIATION OF THE PHILIPPINES PAIN SOCIETY OF THE PHILIPPINES PHILIPPINE BRAIN TUMOR ALLIANCE PHILIPPINE CANCER SOCIETY PHILIPPINE COLLEGE OF SURGEONS PHILIPPINE OBSTETRICAL AND GYNECOLOGICAL SOCIETY PHILIPPINE SOCIETY OF HEMATOLOGY & BLOOD TRANSFUSION PHILIPPINE SOCIETY OF MEDICAL ONCOLOGY PHILIPPINE SOCIETY OF ONCOLOGISTS PHILIPPINE SOCIETY OF PATHOLOGISTS PHILIPPINE SOCIETY OF PEDIATRIC HEMATOLOGY PHILIPPINE SOCIETY OF PEDIATRIC ONCOLOGY PROJECT: BRAVE KIDS INC. SOROPTIMIST INTERNATION ORTIGAS & ENVIRONS SURGICAL ONCOLOGY SOCIETY OF THE PHILIPPINES  Ngelangel et al (2016). Philippine Costs in Oncology Study. https://www.facebook.com/CancerCoalitionPH/
Petition to Horizon Blue Cross and Blue Shield N.J.
Insurance refuses to pay for Life Saving Operation for Ovarian Cancer
I am seeking any way I can to get the word out about insurance companies giving death sentences to women diagnosed with Ovarian Cancer. I have Horizon Blue Cross and Blue Shield N.J. health insurance. Three and a half years ago (October of 2014) I received a diagnosis of Stage 3 Ovarian Cancer. Ovarian cancer, according to the Cancer Treatment Centers of America, is usually diagnosed after menopause. However, some have been diagnosed as early as their 40’s or 50’s. This is not what you would label an “old person’s disease”. I began treatment with IV chemo, surgery (complete hysterectomy) followed by more IV chemo. By June of 2015 I was in remission. I was in remission for two years. Two weeks before Christmas in 2017 I was told the cancer was growing. It had now spread to the liver, spleen and diaphragm. My doctors at Cancer Treatment Center of America, Chicago told me my best (and only option quite honestly) is a procedure called HIPEC Surgery. Without this procedure, the cancer will continue to spread. Our insurance pre-certification was submitted and surgery was scheduled for Tuesday, March 20, 2018. On Friday, March 16, after a day of pre-op testing, BCBSNJ notified the hospital the claim was being denied. This was an hour before everything shut down for the weekend. The reason? BCBSNJ is calling it experimental. This procedure was approved by the FDA in 1999. Two appeals have been filed and denied. As an alternative, my doctor wanted to perform surgery to remove the tumors (called debulking). Now we are being told this will not be approved because it was part of the original request for pre-certification. The part of this procedure they are labeling as experimental is a heated chemo placed in the abdominal cavity for two hours. How can they say no to a life-saving operation that has been performed for 20 years?! I have spoken to others who have had the same diagnosis, received the procedure and are living healthy lives today. So yes, there are insurance companies that do approve this. My husband and I are middle class people. He has worked for the same company for 38 years and always thought his insurance would be there when he needed it for either of us. We are currently trying to figure out a way to finance this procedure out of our pockets. BCBSNJ needs to update their coverage! Please sign my petition and share it. Ovarian Cancer is a devastating disease, but there are procedures that can eradicate it. Insurance companies should be in business to help save lives – not condemn women to a death sentence because of outdated policies! PLEASE SHARE ....... GET THE WORD OUT AGAINST THESE INSURANCE COMPANY'S.... Thank you! My friend Joyce started a Fundraiser to help pay for the HIPEC part of the surgery that the insurance wont cover ($35,000). Here is the link. Any thing will help and thank you for sharing this and if you helped with the Fundraiser. https://www.gofundme.com/lifesaving-surgery-for-janine-may
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 U.S. Environmental Protection Agency
Ban Asbestos in the US Now, Without Loopholes or Exemptions
The bottom line is simple: Asbestos causes deadly cancers and other diseases, including incurable mesothelioma, and kills an estimated 15,000 people in the US every year — yet companies still continue to import and use it, knowingly sickening innocent Americans. The U.S. Environmental Protection Agency (EPA) is now embarking on a review and regulation process that is slated to take up to five years. During that time, tens of thousands will continue to face deadly exposures. But there's a way we can ban this known killer even faster: The EPA has the option of enacting a ban NOW, utilizing existing research (of which there is a ton) as supportive evidence. The EPA has put decades worth of time and dollars into research asbestos — they have all the data they need to ban this killer completely — without any loopholes or exemptions that allow greedy corporations to keep using it. Rather than spending more years and more money to determine what we already know to be true, we urge the EPA to heed existing data BAN ASBESTOS NOW! For more information on asbestos and how to prevent exposure, please visit www.adao.us.