Tell the FDA to stop denying ALS patients treatment options
When I became a parent, I knew immediately that I would do anything to protect my daughters from the hardest parts of life. My mission would be to give them as much love and comfort as I possibly could. But now instead of me taking care of them, my daughters are often responsible for taking care of me, because in May of 2014 I was diagnosed with ALS. Now, instead of protecting them, my daughters are forced to watch as my body dies one muscle at a time. ALS is a devastating disease, that currently has no effective FDA approved treatments. However, there are promising therapies in the FDA approval pipeline that might improve my chances and quality of life, but the FDA isn’t willing to expedite the approval of these drugs, even though the average life expectancy of an ALS patient is 3-5 years and the average time it takes for a drug to become FDA approved is over a decade. Please join me and Hope NOW for ALS in petitioning Congress and the FDA to apply Accelerated Approvals (AAP) to promising treatments targeting terminal diseases, and implement faster, smarter, and more humane clinical trials using today’s science. This is not a radical or new idea. In 1992, in response to the HIV/AIDS epidemic, the FDA adopted the Accelerated Approval Program (AAP) – an expedited approval process to treat fatal diseases. This was a process to allow patients fast access to potentially life saving drugs, and has since been used for cancer and heart failure treatments. But the FDA refuses to apply it to ALS and other rapidly fatal diseases. How can it possibly be fair to exclude the most vulnerable and at risk people -- those with fast acting terminal diseases -- from this program? ALS is always fatal, and there are currently over 30,000 patients in the US with no options. We need help. We need options. My diagnosis is the greatest challenge my family has ever faced, and my daughters have amazed me with their grace and strength in taking on this battle with me. I know that even though my life has not turned out like I imagined it, I can still be the dad I always wanted to be, and I can still show my daughters what it means to take a stand for what counts. Please join me and Hope NOW for ALS to help save my life, and the lives of so many others around the country.
Save Net Neutrality
Net neutrality preserves the right to communicate freely on the internet. Net neutrality requires internet service providers (ISPs) to give everyone equal access to everything you use on the internet-- email, watching videos, reading news articles, and listening to music. It prohibits ISPs from slowing down, speeding up, or blocking content on the internet. It is how the internet has always worked. Unfortunately, this is being threatened by the FCC- the Federal Communications Commission. If the FCC ends net neutrality, then how we’ve used the internet changes completely. ISPs will be able to block content, slow down internet access, and favor websites over others. It will also end the Title II of the Communications Act, which charges ISPs for blocking content or slowing down internet and creating “fast lanes.” “Fast lanes” would allow certain internet service providers to give internet access faster than any other service providers. Ending net neutrality could have global impacts and change the way the world shares information and changes how information is processed. As high school seniors about to enter into the real world, we cannot imagine what life would be like if we did not have net neutrality. Net neutrality allows us to use our freedom of speech on a platform that is like no other. I can go on the internet and research something without the fear that an ISP has favored a certain website that is completely biased one way or blocked certain websites. If you believe we should have free access to the internet, sign this petition to show your support. This issue is time sensitive and must be addressed. Support free and open internet! Thank you for your support, Katie Lemon
Hold Military Moving Companies Accountable
An Open Letter To Our Elected Officials - UPDATE 1 to the petition: https://militaryspousechronicles.com/2018/10/02/pcs-petition-brings-change/ Every year thousands of military service members and their families pack up and move on military orders. All of their memories, heirlooms, worldly processions, keepsakes, pro-gear, kids toys, and some useless stuff, otherwise known as household goods (HHGs) gets packed up by contracted strangers, loaded onto a truck and driven across country. If you are on the lucky side of things, your HHGs will arrive with a few scratches and maybe a broken bowl. However, most everyone ends up on the other side. Boxes will be unloaded smashed and torn, furniture will come off broken in multiple pieces, and other items will just go missing. It will be brushed off as “don’t worry, you can just file a claim”, and while that might be true, there are things that money just can’t fix. Money can’t replace the broken hutch inherited from my grandmother. Money can’t fix the missing foot board from the custom made bed. Money can’t fix my discontinued, now smashed in to pieces wedding china. And money can’t fix the box of my children’s baby memories box that never arrived. I know, we should just leave these things with family! While that is a good thought, it’s not always possible. Some service members just don’t have the family available to leave these things! Every year, thousands of service members file claims with moving companies. Within the last 2 years the average claim has been around $10,000, with an average of only 50-60% of that being paid out. Over the last 5 years, the PCS season has become more and more horrendous to deal with. The major moving companies being awarded the contracts, often sub contract out to smaller, local companies. Many of these companies do not understand how military bases work- usually sending drivers or crews who have a felony background, can’t access post, or a truck that has expired registration. These companies also do a poor job in packing and handling of the HHGs. Many times the crew will pack as quickly as possible to get to the next job to make more money. In doing so, things are usually packed improperly, allowing for damage to occur. When loaded into the truck or unloaded at the storage facility or destination, everything is usually just thrown around without a care. When Service members and families speak up about how things are being handled, we are usually scolded, degraded, and told to just let them do their job. In one of our recent moves we had a mattress come off the truck soaking wet. When I questioned it and ask what my son was suppose to sleep on, the driver took a furniture pad off the dresser and said he could sleep on that. When we moved to our current location, I questioned the driver about my high value list, and the markings on the inventory about the furniture. The response I received was “this is just how we do it.” Then when we arrived, our range bags complete with range equipment were missing. Our military service members and their families already sacrifice so much for this country. The deployments, holidays missed, birthdays not celebrated, their children’s firsts moments, training time, and sometimes even their life. Is it so much to ask that moving companies take a little more care in handling our memories? Is it so much to ask our elected officials to step in and protect our service members from the headache and heartache during a PCS? I challenge you to start holding these companies accountable. I challenge you to step up your game and ease the worry burden on our military families. MilitarySpouseChronicles #PCSChronicles #MemoriesSmashed
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. 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 on an about 90 degree day again without an ice pack. His labs elevated again afterwards. My son wants to know, "Why would they do that?" I contacted the manufacturer, who completes all of the testing 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 the liquid medication that the youngest children take are the most harmed by the mishandling of medications outside of the manufactures temperature storage guidelines. Our youngest of children's lives are being threatened. I contacted the mail order pharmacy who refused to take 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. I contacted the FDA, who states that the mail order pharmacy should be using the manufacturer's guidelines that have been proven safe. Not the reference range by USP that has not tested my son's exact medication. However since the mail order pharmacies are regulated loosley by the State Board of Pharmacy, not the FDA there was nothing that the FDA could do. I spoke with a UPS driver. He states temperatures on his truck are far above 104 degrees on a 90 degree day. He is mandated to keep his door closed unless getting a package. He states it gets so hot on a 90 degree day that he cannot breathe when he opens the back. 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 untied with many other pharmacist, 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 shoudn'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 hosptial 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. Could you imagine being required to go to a different doctor every time you needed medical care for you or your family? The pharmacist and patient relationship is crucial to the successful outcome of the patient's overall health. Taking this away is harmful to patients and be more costly to our already stressed healthcare system. Another important fact. Mandatory mail order programs are discriminatory. It is estimated that 40% of 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? 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!!
Remove sub-Asian boxes on Census Form 2020! Stop racist anti-Asian anti-immigrant legacy!
Dear fellow Americans for justice, brothers and sisters against racism, The glaringly racist legacy of sub-Asian boxes on the Census form was started in 1870, after the Burlingame Treaty of 1868, which eventually led to the infamous, racist, and inhumane Chinese Exclusion Act spanning from 1882 to 1943, which among other terrible abominations, banned U.S. residents of Chinese descent from having children or getting married; their family members in Asia were forbidden from entry to U.S. and reuniting as families. The Census form has no "Asian/Asian American" category. In its place are a group of boxes signifying foreign nationalities in Asia as if Asian Americans were all “perpetual foreigners.” It intrusively identified and collected data on which U.S. residents were of Chinese, Filipino, Indian, Vietnamese, Korean, Japanese...descent. While the Chinese Exclusion Act ended in 1943, did these racist, humiliating, dehumanizing sub-Asian boxes get removed from the Census form? No, they were kept on the Census form by the U.S. government even until today, and if we don't fight back and boycott the Census form with sub-Asian boxes, it will stay on the 2020 Census form and beyond, prolonging a racist American legacy, a shame to all Americans. This legacy treats Americans of Asian descent as perpetual foreigners, and collects intrusive personal ancestral origin data used in many kinds of racial discrimination and persecution. In one example, the U.S. government used information from the Census Bureau to identify native born Americans of Japanese descent and sent them to Internment Camps during the World War II. There were also discriminatory laws against Americans of various Asian descent, such as Filipino. Such horrendous trampling of humanity will happen again unless you and I act now to boycott a 2020 Census form with sub-Asian boxes. We demand these sub-Asian boxes be removed and replaced with one description--"Asian/Asian American." Injustice to one human being is injustice to all human kind. If we don't stop this racist and anti-immigrant legacy, its “logic” and mentality will be repeated in current and future policy-making. Let's keep fighting against racism and improve the human condition step by step. Please join the good fight to make this historically significant change happen for now and forever, by signing this petition and sharing it on social media and by email, word of mouth. Power to the people! Fighting on, Americans against racism and anti-Asian anti-immigrant legacy
Change SC tether & outdoor dog laws
All throughout South Carolina dogs are being left chained to trees all night and day. Never moving or experiencing a decent life. Leaving dogs tied to trees is legal in South Carolina. With the temperatures we are experiencing now in the winter, it can get into the single digits. It is also legal to leave your dog outside (in freezing temperatures), as long as their shelter has 3 sides. This law needs to change immediately. If this petition gets enough signatures, we can help protect these animals from a life of solitude and despair. I own three dogs who are very well cared for- leaving them outside or having them chained up makes me sick thinking about it. One dog in particular I see everyday is chained up 24/7. It’s shelter is a plastic dog house. Plastic. This dog lives a miserable life and freezes in the winter and is left in the extreme heat in the summer. This is ridiculous and inhumane. The law needs to be changed immediately. Shamefully, the human race needs a law for common sense. Why have a dog if you do not want to provide the basics of caring for a living thing.
We Demand that the U. S. Senate not confirm Andrew Puzder as Secretary of Labor
Andrew Puzder is among Trump's more controversial Cabinet picks because he has publicly opposed the overtime rule and various other Department of Labor regulations, and because the fast-food industry, from which Puzder hails, is a top wage-theft enforcement target at the department. Puzder is CEO of CKE Restaurants, which includes Carl’s Jr. and Hardee's. It’s actually very hard to imagine a worse choice for Labor Secretary than Andy Puzder. The Labor Secretary’s job is to look out for American workers. Trump's Labor nominee has opposed increasing the federal minimum wage from $7.25 an hour to $10.10 an hour and efforts to expand eligibility for overtime pay. It would be kind of funny if it wasn’t so serious. During the election, Trump made a lot of promises to create good jobs. But he’s filling his cabinet with CEOs and right-wing billionaires who have spent their lives undermining working people’s rights to come together in unions, while fighting minimum wage increases, paid sick leave and family leave policies. The evidence clearly demonstrates that protecting the rights of the people who work at Puzder’s company or its franchisees doesn't seem to be his priority. Puzder has run a business model that has produced widespread labor abuses at the companies. According to data compiled by Bloomberg BNA, over the previous seven years, about 60 percent of all Labor Department investigations of Carl's Jr. Restaurants found violations of the Fair Labor Standards Act. While working people at his fast food chains sometimes were making below minimum wage, Puzder was taking big compensation packages. In 2012, he made 291 times as much as workers at his restaurants. Now, he could be in charge of enforcing our nation’s labor laws—from ensuring workplace safety to investigating wage theft. His companies had the fourth highest incidents of wage theft reported to the government. ‘Wage theft is a rampant, everyday problem in the fast-food industry: Nearly nine out of 10 fast-food workers across the country report having money stolen from their paychecks by their boss,’ Kendall Fells, the Fight for $15 national organizing director, told Bloomberg BNA via e-mail. Bloomberg reported. “Fells referred to a 2014 poll commissioned by the campaign of more than 1,000 fast-food workers nationwide. The survey documented such common worker complaints as being forced to perform tasks before clocking in or after clocking out, having the cost of uniforms deducted from their paychecks, and not receiving breaks during long shifts.” Puzder’s Carl’s Jr. restaurant chain also has a history of sexist television. He thinks it’s appropriate to peddle sex to kids if it sells the product. “We believe in putting hot models in our commercials, because ugly ones don’t sell burgers,” said the CEO in a 2011 press release, according to Fortune. “We target hungry guys, and we get young kids that want to be young hungry guys.” Let’s target Puzder’s nomination instead. Just Say No Puzder at Labor. This petition will be delivered to the full Senate and to the Health, Education, Labor, and Pensions Committee of the U.S. Senate
Say Yes To Disability Rights
On February 15th, the House of Representatives passed HR620, the so-called Americans with Disabilities Education and Reform Act. Instead of stopping the few frivolous lawsuits that occur, the bill will roll back nearly thirty years of civil rights legislation for people with disabilities in the United States. By passing this bill, You will undo the foundation of the Americans with Disabilities Act, a piece of landmark legislation passed in 1990 that gives disabled people a chance at equal access to employment, education, and society in general. By voting yes, you will Force disabled people to endure a lengthy process that involves filing complaints with businesses when they face accessibility barriers. These businesses, some of which have violated the law for almost 30 years, will have up to six months to resolve accessibility issues, and even longer, if the businesses can demonstrate “substantial progress” toward resolution.No other civil rights law has ever put the burden on those it protects to start and maintain the enforcement process. HR620 places cost-cutting for business owners ahead of the human rights of people with disabilities. Imagine having to wait over six months to use the restroom, locate merchandise, or check out confidentially and independently when building codes and other provisions for your civil rights have existed for almost 3 decades. Republican Senator Jeff Flake of Arizona will soon introduce the bill to the rest of you in the United States Senate.Please, Senators, we urge you to vote against this unacceptable and unfair legislation. Do not weaken the Americans with Disabilities Act. Do not weaken current and future civil rights legislation for everyone by placing the responsibility for enforcement on those who need protection.Thank you for your attention.
Protect SC Employees (It could’ve saved this woman’s life)
36 yr old Alicia Mitchell was walking from work at 8:21am on a usually busy road because she was told she'd be fired (confirmed via a cousin) if she didn't come in. This was apparently the Walmart MarketPlace on Ladson Rd in Ladson, SC. A 17 yr old unlicensed driver was going too fast on icy roads, lost control, slid off the road, that causing him to hit and kill Alicia. SC Governor and countless others urged people to stay home and off the roads. SC currently has no laws protecting an employees rights due to it being a right to work state and employers can let you go at any given moment for no reason at all. I believe SC needs to adopt laws protecting its citizens to avoid situations like this. Many other states have laws protecting its employees and I think it is time for SC to adopt similar laws. This lady’s death could’ve been avoided had SC citizens had laws protecting them from repercussions for simply calling out due to unsafe conditions that State Officials advised people to not travel in. She feared for her job, so she went to work, and in turn lost her life.... My hope is that officials introduce a law named Alicia’s Law or adopt similar laws as other states. Everyone please sign to help! No matter where you live your support is greatly appreciated. ❤️ Share, share, & share some more until we reach our goal. https://m.facebook.com/story.php?story_fbid=1547411458647565&id=148070675248324 http://m.live5news.com/live5news/db/348384/content/nTe1B5yH
Together we can help fight a disease impacting sickle cell trait carriers
My name is Cora Connor and I am writing you on behalf of the estimated 3.1 million Americans affected by Sickle Cell Trait, a common blood disorder, affecting more than three hundred million people worldwide. Individuals with this disorder only carry one defective gene and generally live normal lives. These individuals are at risk for kidney injury, as recently recognized by the NCAA, and other illness. Many people (Sickle Cell Trait carriers, family members, and even physicians) are unaware that there is a rare form of kidney cancer associated with sickle cell trait, called renal medullary carcinoma (RMC). Renal medullary carcinoma is a very aggressive form of kidney cancer and is almost exclusively seen in young African Americans, under the age of 30. The prognosis of these young patients is dismal. Typical survival is under 12 months. Renal medullary carcinoma was first discovered in 1995, but between 1995 and 2012, only 240 cases were reported to The North American Association of Central Cancer Registries (NAACCR). There are a number of areas of concern with regard to this cancer: We need to determine the true prevalence of RMC. Because we lack national health policy that reinforces education about sickle cell trait, many patients do not know their status, or their risk. Without standard screening tests, early detection is almost impossible. There has never been research funding for RMC, so treatment options are limited. Furthermore, most physicians are not familiar with the disease and lack knowledge to deal with this cancer effectively. When patients are able to reach doctors that have RMC expertise, they are usually out of state and many insurance plans will not allow their patients to leave the state of residence, even if there are no local options. This is particularly true for Medicaid covered children and young adults. As a result, many people are denied the option to receive expert care. We have assembled a multidisciplinary focus group, initially through support from The William Guy Forbeck Research Foundation, with physicians, scientists, and lay participant advocates from across the United States, Europe and the Middle East. The goal of this focus group is to begin to raise awareness and to elevate the research for RMC. We are appealing to the National Institutes of Health (NIH) to promote renal medullary carcinoma research, awareness and disease intervention initiatives across the United States. We need to educate the public, as well as health care providers, about sickle cell trait and renal medullary carcinoma. We also need to launch a screening program and create a registry for this disease in order for health care providers to work collaboratively, nationally and internationally, to treat this disease and bridge the gap that currently exists in meeting the health care needs of the individuals suffering from this disease. Thank you for your time and consideration. Respectfully, Cora Connor