United States Department of Health and Human Services
United States Department of Health and Human Services
Between May 7th and June 20th 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. These kids, many of them toddlers who cannot speak for themselves, are concentrated in camps far from their parents, with no plan to reunite them. The government even had the gall to demand that parents agree to “self-deport” in order to get their kids back. On June 26th, a San Diego judge ordered the administration to #ReuniteEveryChild under the age of 5 by July 10th, and the remaining by July 26th. However, as of July 9th, the administration says they can only reunite 54 of the roughly 102 children under the age of 5, that’s less than 2% of the total separated. The administration requested an extension to these dates and on July 9th, a federal judge granted that extension. Our federal government is inflicting harm and trauma upon these children through this mistreatment. Their policies include not allowing staff to touch or hug the imprisoned children to comfort them. Meanwhile, parents who are desperately trying to call their own children can only call a single government hotline – a phone number which has been proven to be mostly ineffective. At Define American, we are asking everyone, especially journalists, 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 immediately #ReuniteEveryChild?
Demand the GOP Stop Attacking Our Health Care
Natalie Weaver is fighting for her eight year old daughter, Sophia’s, life. Sophia suffers from Rett Syndrome, a rare neurological disorder that has taken away her ability to walk, talk and do anything on her own. She has severe deformities on her face, hands, and feet, and she has already undergone 21 surgeries. Sophia requires thousands of dollars of around the clock care every month which is provided in part by a state program funded by Medicaid. When politicians tried to cut that program in North Carolina, Natalie fought for her daughter and other kids with disabilities in her state — and she won. When I hear of stories about people like Natalie and Sophia, I am inspired to do more. We need more people like Natalie to pledge to hold politicians accountable when they try to take away health care from the most vulnerable people in society. I’m asking you to sign this pledge and become a Health Care Voter who will speak up for children like Sophia. Over the past 10 months, as President Trump and Republicans in Congress have attempted to strip health care from millions of families, Natalie left her home state of North Carolina and headed to Capitol Hill where she made her voice heard -- on behalf of her daughter whose life is on the line. She continued to speak up for months and months and months to tell Sophia’s story. Elected officials work for us. As constituents, we need to come together to speak out against the GOP’s efforts to undermine our health care system and demand our elected officials support policies that strengthen, not threaten, our health coverage. Join me and Natalie and become a Health Care Voter, to demand the GOP stop attacking the life-saving health care millions of families depend upon — pledge to hold your elected officials accountable for the votes they have taken and will continue to take and support those who fight to protect affordable, accessible, and high-quality health care.
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.
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.
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!
Justice delayed is justice denied. Hang the murderer of Zainab to death!
This petition is related to the rape and murder of Zainab Amin, a girl from Kasur Pakistan. We demand of the murderer to death. Unfortunately enough, we are living in era where the major news of murders and sexual assaults aren't a surpise anymore nor a matter which we concern anymore because its common and its ok if it happens. Because the whole world is going through it. Isn't it? But indeed our failure to understand that our quietness in such matters is basically adding fuel to the fire is yet another big problem. This has now resulted in worsening the situation and the sexual assault and murder of a 7 y/o angel, Zainab, in Punjab,Pakistan clearly indicates the level of humanity we have undoubtedly reached to. Found raped and murdered on a pile of heap on Tuesday, five days after she was kidnapped from her area while she was on her way to Madersah and her parents being out of the country to perform Umrah, left the whole nation dumb and disheartened. What a cruel and atrocious world to be lived in! The CCTV footages clearly shows that she went with the man without doing any protest, clearing up the situation that it must be someone whom she used to know. But of what use are those footages if the concerned authorities have not been able to find the murderer even after 24 hours? Or are they waiting for another Zainab to go through the same? Adding more, the city she belongs to(Kasur) have been reported with such cases before, I repeat ONLY reported cases because belonging to an Eastern family, your family name is spoiled if such thing happens to you, so many of the case or majority as it should be said are not even reported. But thanks to the laziness of the concerned authorities, such matters have never ever resolved and will never in future, if the person(s) or group(s) behind such cases are not given the punishments a/c to the Laws of the nation. As in Islam, the punishment is to that person to death, we demand the authorities to do same with the murderer of Zainab and that too in public so that no one be ever able again to commit such a pathetic crime, no Zainab be ever facing the same, no family be deprived of their name. Also this must be done as soon as possible because justice delayed is justice denied. Its a high time now that we should stop considering sexual abuse(either verbal, social or physical) as a taboo subject anymore and in this regard, we should raise our voices as much as we can. More power to your family, Zainab. May no more Zainab pass through the same. We I'll try our best to get you justice.
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.
Remove online reviews of doctors!
Doctors and other healthcare providers are reviewed on online review sites, similar to other businesses. We, however, are not like those other businesses. These online reviews are an open forum to the public written by patients, who are allowed to share their stories and photos explaining their experiences that they had with their doctor. Often these reviews are negative and accuse the doctors of complications or mismanagement from medical visits, treatments and procedures that they have had. Unlike other businesses, we, the doctors, are not allowed to respond, to defend our case or share any facts or photos to the public because of HIPAA and medical privacy laws. We, the doctors, find this extremely unfair and unjust. If patients are allowed to review us, then we should be able to defend the review and be able to state publicly our side of the story. This is a clear cut prohibition and violation of our rights to defend ourselves and to protect our names and reputations. These reviews that are often one sided, impact our livelihood and medical practices. They also cause emotional distress to the doctors, who cannot explain their side of the story that is out in the public forum for others to read and believe. Also, many doctors fearing poor reviews will overprescribe and overtest just to "satisfy" patients. We, the doctors, should not be pressured to do things to get good reviews. We want to provide medical care not customer care. This affs the care to our patients and society as a whole. We ask for immediate withdrawal of ALL doctors and providers, who are affected by HIPAA and medical privacy laws, from being reviewed on these online review sites. Until we can defend ourselves, a review should not be posted to which we cannot respond.