United States Department of Health and Human Services
United States Department of Health and Human Services
Last summer, the Trump administration separated nearly 3,000 children from their parents at the U.S.-Mexico border when they instituted a new “zero tolerance” policy. A San Diego judge ordered the administration to #ReuniteEveryChild, however lawyers from the American Civil Liberties Union told a federal judge that the Trump administration has taken nearly 1,000 migrant children from their parents at the U.S.-Mexico border since the judge ordered the end to the administration’s family separation policy! Our federal government is inflicting harm and trauma upon these children through this mistreatment. Experts in child welfare have been clear, these separations are traumatic and have lifelong consequences for the children and their families. At Define American, we are asking everyone, especially journalists, to demand a plan from the administration to immediately #ReuniteEveryChild with their parents on U.S. soil. Will you sign on and demand that the Trump Administration must immediately #ReuniteEveryChild?
Abolish Daylight Savings Time
Daylight Saving Time is a practice that was created over 100 years ago to increase the amount of workable hours during summer months. By artificially "extending" day into the evening, the amount of literal daylight one had to work was increased exponentially. Today, this practice is absolutely foolish, as agricultural workers are the vast minority among all working Americans, totaling 1~2% in most states, less so in others. There are several medical complications that have been attributed to the practice of Daylight Saving Time such as increase in heart attacks. The impacts of DST are likely related to our body's internal circadian rhythm, the still-slightly-mysterious molecular cycles that regulate when we feel awake and when we feel sleepy, as well as our hunger and hormone production schedules. Light dictates how much melatonin our bodies produce. When it's bright out, we make less. When it's dark, our body ramps up synthesis of this sleep-inducing substance. Just like how jet-lag makes you feel all out of whack, daylight saving time is similar to scooting one time zone over for a few months. The problems with DST are the worst in the spring, when we've all just lost one hour of sleep. The sun rises later, making it more difficult to wake in the morning. This is because we reset our natural clocks using the light. When out of nowhere (at least to our bodies) these cues change, it causes major confusion. Like anytime you lose sleep, springing forward causes decreases in performance, concentration, and memory common to sleep-deprived individuals, as well as fatigue and daytime sleepiness. Night owls are more bothered by the time changes than morning people. For some, it can take up to three weeks to recover from the sleep schedule changes, according to a 2009 study in the journal Sleep Medicine. For others, it may only take a day to adjust to this new schedule. All in all, we should allow our bodies to adapt to time changes just as they always have. With the initial point of DST having become entirely unnecessary in the states which it is now still in effect, it is the most logical path to make it non-standard throughout America.
End Celgene price hikes on popular cancer drug, Revlimid
Celgene, recently acquired by Bristol-Myers Squibb, raised prices on its top selling cancer drug, Revlimid. Announced January 3rd, the price of a 10 milligram dose of Revlimid will increase by 3.5%, totaling $719.82 per pill. Almost 10 years ago, at the end of 2007, the same pill at the same dosage cost $247.28. Celgene has continued year after year to routinely increase the price of its top selling drug. Cancer patients require many treatments of Revlimid per year. This price increase means patients will pay over $200,000 to receive cancer treatment that they need to stay alive. We need to hold Celgene responsible for their actions and bring to light their aggressive price increases. Sign this petition to tell Celgene and Bristol-Myers Squibb that they cannot unjustly raise prices on life saving drugs while needy cancer patients are suffering because they cannot afford treatment.
President Donald Trump...Please Pardon my Chronically ill father!!
My father, Felix Walls, is a federal prison inmate serving life on drug conspiracy charges. I’m not proud of some of his life choices. I make no excuses for his actions and neither does he. But he has now served 24 years with good behavior and his health is failing. My family is seeking a Compassionate release on his behalf. His prosecutor, the U.S. Bureau of Prisons and the U.S. Probation Office have all approved his release plans but a judge must sign off for him to spend his last days at home. He is now 75 years old. He suffers from Parkinson’s disease, heart disease, and arthritis. His Parkinson’s condition has advanced to the point where his ability to function in a correctional facility is greatly diminished. My father has met all the criteria for compassionate release. Compassionate release is a program in which inmates may be eligible for early release due to “particularly extraordinary or compelling circumstances which could not reasonably have been foreseen by the court at the time of sentencing”. Our dad is not a danger to his community or himself. He was involved in drug trafficking in the 1970’s and 1980’s and convicted of conspiracy to possess with intent to distribute cocaine in and one count of conspiracy to launder money. We’re simply waiting for Judge Robert Cleland of the U.S. District Court for the Eastern District of Michigan to approve our Dad’s compassionate release petition. The petition has languished in the court for almost half a year – with no explanation for the delay. Time is running out for our father. Please sign and share this petition calling on the Eastern District Court of Michigan to grant final approval for our father’s compassionate release –before it’s too late.
Therapists and Patients in Nursing Home Rehab Need Your Help
My name is Susan and I’m a proud Occupational Therapist. The health of your loved ones in need of care and the future of my profession is at stake. As an OT, I assess a patient’s ability to walk, get in and out of bed, swallow, go to the bathroom, and sit in a chair. I take care of older patients in so many ways, and I love my job. Greedy rehab and nursing home executives are being given permission to interfere in patients’ therapy plans, and it’s causing real harm. Our jobs are being threatened when we object to treating patients only in a group or if we provide “too much” therapy. Some patients are only getting 15 minutes of Therapy scheduled. Medicare made necessary changes to the existing system of reimbursement to nursing homes. The change (called PDPM) was to ensure that patient need instead of minutes of therapy was the driving force for payment. Since then, trying to manipulate profits, many rehab companies began mandating group therapy and drastically cutting therapy minutes to reduce the hours they need to pay Therapists, not based on patient need as intended. Medical professionals like me are no longer allowed to decide treatment plans using evidence-based clinical judgment in these buildings. This means you or your family members may not be getting the therapy your tax dollars pay for. This isn’t just about medical workers though. And it’s not like we’re not asking for raises. We are only asking to be able to provide our patients with the care they need and deserve. Ask the Department of Health and Human Services to stop these companies now and allow caring professionals to determine the right treatments that benefit patients.
End Gag Orders that Force People to Pay More for Prescription Drugs
What if you went to pick up your prescriptions at the drug store, and the pharmacist failed to tell you that you could get your medication for $10, $20 or sometimes even $100+ cheaper? This happens a lot more frequently then people think -- it might have even happened to you. And the reason? Gag orders that pharmacy benefit companies place on pharmacists that bind them from telling patients that they could get their drugs for cheaper prices. The President and a host of bipartisan lawmakers have said this practice needs to end. Yet the Centers for Medicare and Medicaid Services stopped short of requiring that these gag orders stop immediately. In the meantime, thousands of people could be paying way more for their drugs because of these gag orders. It's time to send a message to big pharma and demand that Medicare and Medicaid put in place policies that prohibit and end these unjust gag orders than punish people in need of medication. There's already movement on this issue -- several states have already moved to ban these gag orders and legislation has even been introduced in the U.S. Senate that would end the practice of big pharma placing gag orders on pharmacists. But big pharma is fighting back -- even suing to prevent a North Dakota bill that bans gag orders from becoming law. It's not right -- pharmacists shouldn't be forced to lie to patients about drug prices by greedy pharmacy benefit corporations, and patients shouldn't have to shell out more money than they have to for already expensive drugs. Tell the Centers for Medicare and Medicaid Services to not just pay lip service to condemning these gag orders, but to enacting real policy that ends their practice entirely in the health care industry.
Get the FDA to act on BCG Shortage for Bladder Cancer
There is a global shortage of BCG (Bacille Calmette Guerin), an extremely effective immunotherapy drug used as treatment for bladder cancer. More than 80,000 people in the United States were diagnosed with bladder cancer in 2017. Currently, Merck is the only manufacturer of BCG. Because of increased global demand, and only a single supplier, there are severe shortages in the U.S. and many other countries for 2019 and beyond. To minimize disruption to patient care and address the current imbalance between supply and increased global demand, we must get the FDA to act by working with other firms and drug manufacturers that make the drug and ask if they can ramp up production to fill any gap in the domestic supply of the product.Urge the FDA to identify foreign versions of the product with the same active ingredient manufactured by reputable firms. FDA can then use enforcement discretion for the limited importation of the foreign version until the shortage of the FDA-approved drug is resolved.Implore that Merck increase the production of the BCG for intravesical use, and not let profit get in the way of saving and improving lives of Bladder Cancer patients.Merck must have the foresight and properly plan for this highly effective life saving drug to always be accessible and adequately available to cancer patients.I started this petition because...My energetic and resilient father is battling Cancer for the third time. Very recently, he was diagnosed with Bladder Cancer. At a young 76 years of age, he underwent a transurethral resection of the bladder in February 2019. A treatment regimen was planned to administer a series of six treatments with BCG, a life saving treatment with minimal side effects. Instead my father had chemotherapy treatment because there were no BCG available. The chemotherapy treatment could not be tolerated and had to be discontinued, severely degrading his quality of life. He remains at risk of the Cancer growing back and spreading, and of not recovering at all. The alternatives to BCG treatment are very costly, life threatening surgeries and treatments. Please help my father and thousands of others live long healthy lives; and not suffer and die because they don't have access to BCG to treat and hopefully beat Bladder Cancer.
Urge FDA to approve new treatment for Carcinoid Tumors
Hi. My name is Kerry and I’m a zebra. Now, before you think I'm crazy, I hope you'll please let me have a minute of your time to explain. In medical school, doctors-to-be are often taught the adage “If you hear hoof beats, think horse”. In other words, the most obvious answer is usually the right answer. But sometimes the hoof beats come from something rarer: a zebra perhaps. For nearly 5 years, doctors heard hoof beats as they looked at scans of my liver and saw some small “things” taking up residence. And, for nearly 5 years, they thought horse. They did blood tests, colonoscopies, upper endoscopies; all of the tests you would do looking for the “normal” cancers such as colon cancer, but the tests were negative. So they concluded that my liver had some benign growths on it. Nothing to worry about. In January of 2016 a biopsy of my liver resolved the mystery. I was diagnosed with a rare form of cancer called Carcinoid or Neuroendocrine Tumor (NET). The disease is so rare it is referred to as the zebra of cancers and represents only about 2% of cancers treated each year. In honor of its rarity, the zebra has been adopted as the official mascot of those who suffer from it and we, the patients, are called zebras. In my desperate quest for solutions to my problem, I read about a treatment called Peptide Receptor Radionuclide Therapy, or PRRT for short. It has been available in Europe for more than a decade and clinical trials here in the United States have recently concluded. The results have been very promising. According to one of the doctors who participated in the phase 3 clinical trial, “The findings were, in my opinion, extraordinarily impressive, the median progression-free survival improved by nearly 80%, which is fairly unprecedented in oncologic studies. The finding is important because limited therapeutic options exist for such patients, who comprise 20% to 45% of neuroendocrine tumor cases.” (1) As you can imagine, I have been following these trials with great interest as I am their target patient: my tumors are inoperable and are known to respond to the drug being used in the treatment. Earlier this year, there was hope the treatment would be approved by mid-year 2016. Then it was sometime in the fourth quarter of 2016. The latest timeframe for approval is now early 2017. I understand and appreciate the fact that the FDA has to perform their due diligence to insure that new drugs are safe and effective. None of us want unsafe drugs to be hurried to market. In the case of PRRT, it appears to have proven its worth, both in US clinical trials as well as in more than 10 years of use in Europe. I don’t profess to know or understand what the holdup is in obtaining approval. I’m certainly not a doctor. What I do know is that every day that passes without this treatment being approved thousands of us zebras get sicker and closer to the point where treatments won’t matter any longer. Will you please join me in urging the FDA to keep the approval of PRRT at the top of their priority list? I’m only 55 years old and I’m not ready to leave this world yet. I and my fellow zebras thank you. Kerry (1) Full article discussing PRRT can be found online at http://www.carcinoid.org/2016/05/03/one-step-closer-us-peptide-receptor-radionuclide-therapy-prrt-neuroendocrine-cancers/
Allergy procedures in schools HAVE to change!!!
Two weeks ago, my daughter was given a peanut butter and jelly sandwich at school. This was with the school (by direct conversations with me - the principal, cafeteria manager, teachers and Nurse) being fully aware of her allergies to peanuts and treenuts. I took every step I could to ensure an incident like this didn’t happen to her, and it still happened. The teacher caught her after only one bite and realized the mistake made, but I was contacted rather than paramedics and her epipen wasn’t administered immediately. This was because her school administration and Nurse did not know that you should immediately give epipen, and when I arrived 40 minutes after she had the bite, I watched as the school nurse fumbled with the epipen obviously unaware of how to administer it properly. This lack of education and awareness could have cost my 4 year old her life. Thankfully it didn't turn out worse than it did. I called and emailed the school board about the procedures and events that took place before and after she had the bite of the sandwich. I have not heard anything back from anyone and I think it is time for change. The system is failing parents of children with allergies. I just read an article where a 3-year old with known and reported dairy allergies was given a grilled cheese sandwich at school last week, and died. All this because the proper procedures were not taken, and a trusted, informed adult, fed him something he couldn't have. http://fox5sandiego.com/2017/11/08/toddler-with-dairy-allergy-died-after-school-gave-him-grilled-cheese-family-says/ I have been assured by my daughter's school and administration that this will never happen again and they are being extremely proactive about the situation, even though it never should have taken my child being traumatized for these proactive steps to be taken. Proactivity is a must in every situation, BEFORE a child dies or is traumatized. I know that teachers and administrators are required to watch compliance videos and be educated about allergies and such, but how many of them actually know how to administer Epinephrine when needed? Do they know how to tell when it is needed or what some of the symptoms are? Did you know that someone falling asleep is one of many signs of anaphylactic shock? So is fever, vomiting, sneezing, itching, coughing.. hives, choking, and throat swelling seem to be the only symptoms that most people know to look for. Why would the school, or school nurse especially, call the parents before administering epinephrine and calling 911 when a child is given a known allergen? These should be the first steps! Why didn’t the school nurse know that she was supposed to have epipen immediately? If you do not have a child that has allergies like this, or have never seen what a child looks like when they go into anaphylactic shock, then you cannot imagine the wave of panic and fear that sweeps through a parent when they get a call stating that their child, in an environment that is supposed to be safe for them, was given something that is poison to their body. You can't think straight to remember to verify that the school is doing their job correctly, and quite frankly there are many parents who could be unaware of just how severe their child will react. They may not know that 911 should be called JUST IN CASE, if nothing else. They are trained to deal with a situation and can get the child to the hospital a lot faster than a parent can which is sometimes vital to the survival of the child. My daughter got worse on the ambulance ride to the hospital, I live in Dallas and cannot imagine what I could have done had I got stuck in traffic on the way there. My daughter is protected where she is right now, but what if we have to move and she changes schools? Is she going to end up in the same traumatizing situation at another school because the administration is, again, uneducated on the proper procedures to follow? Am I going to have to keep reading articles about children dying because of a severely flawed school/child care system? I am only doing what I feel is best for my daughter and the large and growing community of children with allergies attending school in the United States. I never want to read an article that a child died again because the school didn't know any better, or didn't do the right thing by a child after they were introduced to something they are allergic to, especially when I know there is something I can do to prevent it. Please sign this petition so we can take the steps and get to the people who can make a difference in the lives of children with allergies. I am petitioning to make it a standard in all schools and child care facilities that educators and administrators as well as school nurses are educated in the proper procedures to take when presented with a child with severe allergies that has ingested their allergen. They all need to be educated on proactive steps to avoid the child receiving their allergen, and that in the event that they are given said allergen, the proper steps are taken. Epinephrine first, THEN 911, THEN parents should be contacted. This should be the standard. Let’s make it so. Thank you!
Ban mercury dental fillings in children like the European Union did!
Dental amalgam – a filling material for cavities deceptively marketed as “silver” fillings – is about 50% mercury, a neurotoxin. As of 1 July 2018, the European Union has banned amalgam use in children under age 15, pregnant women, and breastfeeding mothers. In stark contrast, the U.S. Food and Drug Administration (FDA) has done nothing to protect these most vulnerable populations...or anyone else. In its amalgam rule, FDA concedes that this mercury product poses a risk for the unborn and young children: “The developing neurological systems in fetuses and young children may be more sensitive to the neurotoxic effects of mercury vapor.” FDA also admits that there is no scientific proof that amalgam is safe for these populations: “Very limited to no clinical information is available regarding long-term health outcomes in pregnant women and their developing fetuses, and children under the age of six, including infants who are breastfed.” But while the European Union is making sure its children get modern mercury-free fillings, FDA’s amalgam rule continues to promote using this toxic mercury product in American children. It's time for FDA to ban amalgam use in children under age 15, pregnant women, and breastfeeding mothers. All children deserve the same protection from mercury fillings as European children!