Petition to Flemming Ornskov, Howard Mayer
Grant compassionate use of experimental therapy for a life-threatening childhood disease
Our 2 year old daughter, Radha Rangarajan, was diagnosed with late-infantile metachromatic leukodystrophy on April 13th, 2018. Without treatment, Radha will experience a rapid neurological decline over the next couple of months resulting in incapacitation, leaving her non-verbal, blind, and prone to seizures. The disease then plateaus leaving her in a vegetative state for several years, with most children not surviving past their 8th birthday. There are no available treatment options and Radha is not eligible for any clinical trials. Shire Pharmaceuticals has developed an enzyme replacement therapy, SHP611 (also known as HGT-1110), which has undergone early testing with promising results. Our requests for compassionate use of the medication have been denied by Shire despite this being her only chance at life. Radha's condition continues to worsen every day and by the time Shire's proposed follow up trial begins enrolling patients it will be too late for her as the disease will have progressed too far. We respectfully request that Shire Pharmaceuticals grants compassionate use of this enzyme therapy for our sweet little girl. Her life depends on it. Please sign this petition to show your support for compassionate use of SHP611/HGT-1110 for Radha Rangarajan. Thank you.
Petition to Charles Rivkin, John Fithian
Make tomorrow's kid-rated movies smokefree and save one million lives
#RateSmokingR Why do so many kids still start to smoke? America removed cigarette commercials from TV and radio nearly fifty years ago. But kid-rated movies — especially PG-13 movies — still push smoking at children and teens. In 2017, half of PG-13 movies featured smoking, the highest level in years. Smoking in movies kills in real life. Smoking on screen will recruit six million American kids to smoke in this generation. Two million of those kids will die from cancer and other diseases caused by smoking. Parents and health advocates demand a reasonable solution to this urgent problem. America's #1 killer deserves the R-rating. R-rating future movies with smoking will keep smoking OUT of movies rated G, PG and PG-13 — the movies that kids see most — and cut young audiences' deadly risk in half. The CDC says the R-rating will save one million kids from tobacco addiction, America's #1 cause of preventable death. Film producers will still be able to include smoking in any movie they want, accepting an R-rating just as they routinely do for other content. Why won't Hollywood act? The major movie studios and movie theater chains run the film ratings. They know the harm done by onscreen smoking. Their leaders could update the R-rating tomorrow but, so far, they've refused. The tobacco industry, far richer than Hollywood, has a long history of exploiting movies to sell smoking, using paid product placement and other tactics. Movies are the last media channel pushing tobacco at kids, completely unrestricted. When it comes to life and death, Hollywood must follow a simple rule: One little letter "R" will save one million lives. Learn more…and educate others:• Smokefree Movies (University of California, San Francisco) • U.S. Centers for Disease Control and Prevention (CDC fact sheet)
Petition to U.S. House of Representatives, Nancy Pelosi, Paul Ryan, Steve Scalise, Kevin McCarthy, Cathy McMorris Rodgers, Dutch Ruppersberger, Mitch McConnell, Dianne Feinstein, Maria Cantwell, Patty Murray, Bernie Sanders, Steny Hoyer, Joseph Crowley, Linda Sanchez, Tammy Baldwin, Charles Schumer
Update the 40 yr old Pregnancy Discrimination Act to Include Infertility and IVF! (USA)
Statistics from the CDC, NIH, and WHO show that 1 in 8 women struggle with infertility, and around 25% of pregnancies end in miscarriage. Women experiencing infertility have depression rates 2-3x higher than their fertile counterparts. Yet, the millions of women facing these struggles in the United States have no guaranteed legal protection from workplace discrimination. We are held back in our careers, accused of “needing too much time off,” or “not being focused on the job,” and sometimes even fired, all for trying to have a family. It’s absolutely shameful. The Pregnancy Discrimination Act is 40 years old the Family and Medical Leave Act is 25 years old. They both need to change with the time. Protections for those undergoing infertility treatment need to be included. To prove a point, I will share facts and statistics as well as my own personal experiences with workplace discrimination. My hope is that after reading this petition, you will show support to the 12.5% of women— your daughter, sister, wife, coworker or friend— who are fighting a silent battle. WHY THIS IS IMPORTANT TO ME: I'm 30 years old, I have my bachelor’s degree, I work full-time, and I’ve been married to my best friend for 11 years. I'm your daughter, sister, friend, coworker. By age 21, I'd had my first miscarriage. When I was 22, I’d hit the 12-month infertility benchmark. By age 23, I was diagnosed with Endometriosis. My husband and I scrimped and saved for years to be able to afford infertility treatments and further testing because it wasn’t covered under our health insurance. We’ve been through it all—painful tests, surgeries, timed intercourse with Clomid, IUI, IVF, and FET. We’ve lost 3 very loved and wanted babies to miscarriage, and more through failed embryo transfers. During my career, I have experienced disgusting displays of workplace discrimination. I have been asked during job interviews whether I was pregnant and whether I had children. Superiors have given me a hard time and called me “undedicated” and “unreliable” for needing to take a day off for an insemination or embryo transfer, while everyone else was allowed to call out sick for the flu or colds. I’ve been told I’m “not trying to be part of the team” for not wanting to go to coworkers’ baby showers. A few months ago, when I was at work, bleeding through a miscarriage, my boss told me I needed to forget about it and move on with my life. One company told me that prior to offering me the position, they had “Facebook creeped” me to make sure I didn’t have kids, because they didn’t want to hire a parent. I was even fired in December 2017 just a few days after telling my boss I was having a miscarriage, even though I’d never been disciplined or reprimanded prior to that. In fact, both the general manager and the owner of the company had told me several times that I was doing a good job and thanked me for going above and beyond my job duties. To my shock and disgust, I have learned that although this behavior is very slimy, most of it is perfectly legal because infertility does not fall into a protected status. I’m not alone. Women are afraid to talk about their fertility struggles for reasons such as the ones I just listed. Because of the current laws, a pregnant woman is protected, but someone who wants to be pregnant is fair game. Because of the current laws, women get to take 3 months off from work for having babies, but women who need a couple of days off for fertility treatments don't qualify for FMLA leave. This has to change. INFERTILITY FACTS / INFO: It seems like everyone I meet has a story about their aunt's friend's hairdresser's next door neighbor's daughter who went through IVF, but not many people seem to know what IVF actually is. There are many misconceptions about infertility, so let’s clear some of them up. Many people think the terms “IVF” and “infertility treatments” are interchangeable, but they aren't. Infertility treatments include an array of procedures, not just IVF. Some of these procedures are quite simple and others are very scientific and invasive. Of course, before a woman can go through any infertility treatments, she has to go through testing to determine the reason(s) for the infertility. This can’t all be done in one day. Often, these appointments have to be done days (or even weeks) apart, based on the woman’s menstrual period. These tests usually include: Bloodwork Several vaginal ultrasounds Hysterosalpingography (HSG) Saline infusion sonohysterography (SIS) Genetic screening Chromosomal karyotyping Some of these tests, such as bloodwork and ultrasounds, are quick and easy. Others, such as the HSG and SIS, are very invasive and painful. Many women undergoing these diagnostic procedures need to take the remainder of the day off to rest because of the pain and cramping. They can’t use FMLA for it, so their only option is to use a sick day. Once an underlying cause has been determined, the fertility doctor can move forward with the best course of treatment. IVF is not always the right choice and is rarely the first choice. Infertility treatments can include: Surgery Timed intercourse with or without an ovarian stimulant, such as Clomid Intrauterine insemination (IUI) In-vitro Fertilization (IVF) Frozen Embryo Transfer (FET) Many couples start with the simpler options of timed intercourse with or without ovarian stimulation (such as Clomid) or intrauterine insemination (IUI). If these simple procedures don’t work, or if the doctor feels it would be wise to skip them altogether, couples move on to the much more advanced procedures of In-vitro Fertilization (IVF) and subsequent Frozen Embryo Transfers (FET). Most couples do not get lucky on the first try. Most couples go through multiple rounds of fertility treatments, lasting months or even years, before having a child. During any of these procedures, the female patient is expected to attend several doctor’s appointments where her uterus and ovaries are checked via internal ultrasound, and her hormones are monitored through bloodwork. For a patient going through IUI, an additional day is needed for the actual insemination procedure, plus she is advised to “take it easy” for a few days after. For a patient going through IVF, an actual surgery is performed to retrieve eggs from the ovarian follicles, and a day off is required. Then, for the embryo transfer, the patient is advised to take the day off and take it easy for a few days to encourage implantation. Sometimes, complications arise and more time is needed. Furthermore, the timing of all of these procedures is completely fluid and unpredictable. So, it’s not as though a woman can request to use vacation time in advance. Often, she won’t know she needs a day off until the day before. And what about the women who live a great distance from their fertility clinic, where even a simple blood draw is a 3-hour adventure? Those are only the in-office procedures. Behind the scenes, a woman going through IUI, IVF, and FET will be taking daily hormone injections, pills, and vaginal suppositories. Her ovaries are swollen and sore, and everyone in the IVF world knows a girl’s pants won’t button during IVF; most of us live in yoga pants and baggy t-shirts. The side effects of these medicines are unbelievable and include hot flashes, mood swings, weight gain, acne, hair loss, and, very rarely, a life-threatening condition called Ovarian Hyperstimulation Syndrome (OHSS), which I personally had. Then there are the psychological factors to consider, like what is a woman supposed to do when she gets devastating news? Stay busy with work and try not to think about it? A miscarriage is a loss. A failed cycle is a loss. But in the eyes of the world (thanks to abortion) we don’t lose “actual” children, and therefore don’t get bereavement leave. We go through all of this, but NONE of it qualifies for the protections of FMLA or PDA. It’s 2018. We need to wake up. These outdated laws need to be updated to provide protections for this very strong, but often silently suffering chunk of the American workforce. Women need to be allowed to use FMLA leave for infertility treatments. It should be illegal to fire or refuse to promote someone because of her efforts to have a family. By signing this petition, you are advocating for the 1 in 8, for the 7.4 million women experiencing infertility. You are telling congress, “We need change, NOW!” Thank you for your time and support!
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 East Hanover Land Planning Board, Carolyn Jandoli
Join in solidarity to prevent the construction of an infringing industrial development.
UPDATE: The plan has now been updated to contain one 6,000 sqft warehouse and 7 townhouses of dubious nature (that may exist only to incentivize the rezoning and may never be built). We the undersigned OPPOSE the zoning proposal to convert 8 Merry Lane, an existing Residential area, into a proposed Industrial zone. The plan is to build a huge industrial warehouse 20,000 sqft (UPDATE: Now 6,000 sqft warehouse and "7 townhouses") in the heart of residential area. We believe this is a clear circumvention of established Spot Zoning laws for the following, blatantly adverse reasons: We believe the 8 Merry Lane industrial use application is not in the best interest of the General Welfare of the public. It's contradictory to the intent of the Master Plan - whose goal it is to designate and preserve this area as a residential zone. This application will negatively affect the quality of life for the families and residents living in this and adjacent residential zones. The granting of this proposed use would be arbitrary and capricious. Please do not grant a special privilege to allow industrial use on 8 Merry Lane in East Hanover. If it happens to us, it could happen to you too. Exercise your rights as law abiding home owners and display your opposition.
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. House of Representatives, Paul Ryan, Nancy Pelosi
Support legislation to keep dialysis patients insured. Tell Congress to pass H. R. 3976.
Low-income Americans with high-cost chronic conditions, like kidney disease, often require charitable assistance to pay for their health insurance premiums. But some insurance companies are refusing to accept payments from non-profit organizations. This puts low-income and financially struggling patients at risk of losing their insurance. Patient advocates for the American Kidney Fund started a petition to help address this crisis. We are fighting to ensure that all kidney dialysis patients can maintain access to their life-saving treatment. The Access To Marketplace Insurance Act would do just that, and we are calling on Congress to pass it into law. The Access to Marketplace Insurance Act, was introduced in the House of Representatives last October. The bill would require insurance companies to accept payments from nonprofit organizations like the American Kidney Fund that serve people who are living with serious health conditions and need charitable assistance to stay insured. Now Congress must take the next step and pass this legislation to ensure that ALL low-income Americans living with chronic conditions can keep their insurance and get the care they need. Please sign and share this petition calling on Congress to vote on this vital legislation right away.
Petition to Donald Trump, Centers for Disease Control and Prevention, Federal Drug Administration, Drug Enforcement Agency
Develop procedures and/or testing to separate addicts from pain sufferers!
As an advocate for chronic and intractable pain awareness and laws (and being a pain sufferer myself), I wrote this petition to appeal to you (President Trump, CDC, FDA and DEA) that we understand the war on drugs and wanting to stop the overdoses, abuse and addiction caused by illegal use of various substances (including opioids) is justified. However, it is causing harm to real chronic and intractable pain sufferers. The harm goes from a low to no quality of life to suicide! We deserve to be treated like human beings and taking away a big part of pain management is inhumane. Many strategies and options exist to treat chronic noncancer pain. Since chronic and intractable pain is not a single entity but may have myriad causes and perpetuating factors, these strategies and options vary from behavioral methods, alternative medicine, rehabilitation approaches and using several different medications, including opioids to help the pain sufferer. We now are looked at as addicts and abusers when in fact many of the pain patients that I have come in contact with throughout the world are just the opposite. They follow their doctor's guidelines perfectly. The biggest question that is asked all the time is "what does it feel like to get high"? Pain patients medications are going to the areas of the body to help their pain and thus no extra medication to get high. Treating pain sufferers is very difficult. Treatment plans made by a team of doctors is the best way. This includes, internal medical doctors, psychologists, occupational therapists. physical therapists, dietitians, alternative medical doctors, holistic medicine and homeopathic medications. I realize this is a lot of specialists, but I feel they at least should be available to the patients. Our bodies are all different (as you know) so using a one size fits all way of treating pain will not work! We have no problem with some all-inclusive pain treatment plan using other methods with the opiate treatment, but just cutting people down to a one size fits all approach to opiates is insane and will cause more suicides with the pain population. You may help the abusers, overdoses, and deaths from those individuals you are trying to help, but you will cause more suicides and deaths from those pain patients who really need their medications. This makes our pain sufferers collateral damage! We are tired of being collateral damage in the "war on drugs"! This war has been going on a long time and you have all had issues separating addicts and abusers from those people who have chronic and intractable and need opiates and other medications to have some semblance of normalcy. This is a violation of our human rights! Please stop the suicides and treat chronic and intractable pain sufferers with treatments that their physician deems appropriate!