United States Department of Health and Human Services
United States Department of Health and Human Services
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.
Approve Felix Walls's compassionate release from prison
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 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.
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!
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 effects 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.
Get Child Protective Services to re-investigate YouTube channel: DaddyOFive.
Mike Martin's YouTube channel, DaddyOFive, has posted videos that would suggest possible emotional and physical abuse of his children. Mike Martin and his family should be placed under investigation by Child Protective Services to see whether these claims hold true. Although one of Martin's videos stated that they have already been placed under investigation and that there was no evidence of abuse, this petition simply asks to re-open the case. Child Protective Services in Maryland have not been clear as to whether they are doing anything to look into the matter. Here is a video that displays some of the possible abuse: https://www.youtube.com/watch?v=fvoLmsXKkYM Here is Martin's YouTube channel: https://www.youtube.com/channel/UC8lV8KIVWvfsaqOi_d3Wu3w
Please sign!! All Insurance companies need to cover CGMS in full for children under 18
Diabetes is becoming one of the world's most serious illnesses. Here's a few facts about diabetes. As many as three million Americans have type 1 diabetes, according to the Juvenile Diabetes Research Foundation (JDRF). About 15,000 children and 15,000 adults are diagnosed each year. Approximately 15 percent of Americans with type 1 diabetes are children. Diabetes kills 3.4 million people every year: WHO. Nearly 350 million people worldwide have diabetes, according to the World Health Organization (WHO). The United Nations health agency estimates that 3.4 million people die of diabetes every year, and almost 80 percent of the deaths occur in developing countries. My Daughter Dakota was diagnosed type one in march of 2017. Shortly thereafter we brought her home from the hospital she had a blood sugar of 24. She could have died. Thank God we were on watch for this. Shortly after this instance we learned of the dexcom g5. It is a continuous glucose monitor that monitors sugars every 5 min. 24/7. No matter where she is at in the world we get her numbers sent to us and alarmed if she goes too high or too low. This device is not covered by our insurance at all and we have to pay completely out of pocket for it. If insurance would cover this and not cause such a big uproar there could be millions of lives saved each year. Children living with type 1 and type 2 diabetes need this device!!! They need to know what their sugars are doing and which direction their sugars are going in to live a more normal life!!! If Dakota didn't have this device I wouldn't be able to allow her to do things other kids do. It's very expensive but saves lives every day!! If this was covered completely and fully by all insurances a lot more families would have peace of mind and their diabetic children would have room to grow and be as much of a normal kid as they can be. Please sign our petition. Let's make this happen!!!! It's only takes a few minutes of your time!!!! Here's abother story from a type one mom living with the same daily struggles as we are. I'm sure there's plenty of families out there that can relate and share their stories as well. Let's get CGMS covered!!!! Please read this post. Please help me spread the word and share. This may not mean anything to you, but it means the world to my friends living with type 1 and type 2 diabetes. Please just read it! AND PLEASE SHARE SHARE SHARE!! Braydon wears a continuous glucose monitor. Its a sensor I place in the back of his arm that monitors his glucose every 4 minutes and sends updates to my phone. It let's me know if he is dangerously high or low. We are so grateful to God that our insurance helps cover this for Braydon. Braydon is completely unaware of his high and low glucose numbers. Some kids with type 1 diabetes can't get that feeling of awareness when their glucose is changing. With that said, it can be very life threatening. Unfortunately, many insurance companies do not cover this very expensive medical device. The monthly fee to keep a dexcom is outrageous. Why wouldn't it be? We all know how this works. Medical and pharmaceutical companies see something that could make life better and they increase the value tremendously. What insurance companies fail to understand when they don't approve the CGM is as follows:·When a type 1 or 2 diabetic goes severely low they need a Glucogon shot $350.00·911 needs called and they need transported to the hospital by an ambulance. $1200.00·They need IV's and blood work done in the E.R. and need to be monitored by the E.R. staff. $1250.00..These figures are average cost around the United States which comes to $2,800.·1 month supply of CGM sensors come $750.00. I try to make Braydon's sensors last more than the FDA allows to save.Some "brittle" diabetics can have a severe low requiring a glucogon shot 1 to 2 times per month. Especially those that are hypo or hyper unaware. The CGM allows my 8 year old to ride his bike with his brothers and friends without the fear of going low and passing out, or going into a coma, or having a seizure. It allows him to sleep at night without fear of not waking up. The dexcom not only alerts him, but it alerts me as well. Can type 1 and 2 diabetics live without a CGM? YES, but the cost of savings on glucose strips, glucogon shots, and trips to the E.R. have been more than amazing. Can the CGM save money and lives? YES!! it can and for us, it has many times. Braydon currently doesn't have a pump. The initial start up cost will be $2000.00 for us after insurance. We have chosen to go with the CGM before the pump because of how unaware he is of his hypo's. Please share this post. Help me spread the word. Help me help other kids and adults get this CGM so that kids can live a somewhat more normal life without fear because their insurance won't approve the CGM. This may not be important to you because you dont have the fear of losing your child every night you lay them down to sleep. Us parents who care for a child with type 1 fear this every time they leave our presence. They don't do sleepovers at a friends anymore, they don't go to ball practice alone anymore. With the CGM they can have their life back. Please, help spread the word. Right now I got an alert that Braydon is rising and needs insulin. Without this device I would have been aware until his next reading at lunch. Everytime he rises above 200 his organs are damaged, in the long run, without the CGM, our insurance would be spending much more money on other medical cost. Sincerely, Paige Sanders and Cristy Wilson aka "mom's of diabetic children"
Reduce drug waste and environmental hazards by changing FDA drug expiration policy
Every year, drugs that have reached their published expiration dates are thrown away, creating billions of dollars in waste and causing an environmental hazard. Multiple researchers and the US military have proven that drug expiration dates can be extended safely. There is no recorded case of a patient being harmed by the use of an expired drug. The pharmaceutical companies set these expiration dates to increase revenue and not to protect the public. It is time for the FDA to create a new policy and testing requirement for drug expiration dates in the United States that is good for the people and the environment! See our presentation on this subject https://drive.google.com/open?id=16WvhICqJfGcvsL4QrkXNm5h-Qt3yDgQQ
Stop Aerosol Spraying Immediately and Disclose its Purposes
For more than twenty years Americans as well as people from all over the world have been subjected to continuous spraying of "chemtrails." This aerosol spray contains aluminum, barium, fungus, bacteria, nanoparticles, and a myriad of other pathogens that are destroying our water, our earth, and our health. Millions of people believe that this is a program of depopulation and artificial intelligence posing as a a component of a geoengineering solution to alleged "global warming science." If we do not stop aerosol spraying our planet is at stake, and our future as human beings is in jeopardy.
Protect Breast Milk as a Human Right
Women’s preventative care through the ACA is on the chopping block as we speak. Right now, women are guaranteed to receive screenings for breast cancer, cervical cancer, and a number of other conditions through their insurance under a set of guidelines within the ACA. Additionally, pregnant and new mothers are covered for services such as breastfeeding support and screening for gestational diabetes, anemia, and Rh incompatibility. If these preventative care requirements are eliminated, millions of women and families will lose access to the care and services they need. Replacement plans may still include preventative care in bits and pieces, but the most vulnerable populations — young mothers and the children they support — will likely be the hardest hit. In particular, the elimination of breastfeeding support, including coverage of lactation consultants and breast pumps, would be devastating. Breastfeeding strengthens immunities and provides long-term benefits including a reduced risk of diabetes, asthma, and childhood obesity. On top of all this, breast milk is free, and saves working families from the burden of paying for formula: a cost which can add up to over $2,000 per year. Working families are the backbone of our economy, and if we don’t protect the health of our mothers and children, our country will suffer greatly. With all the challenges new parents currently face, this is not the time to create more obstacles. Join us in signing this petition and calling your Senators and Representatives now to inform them of your concern. Text your zip code to 520-200-2223, and you’ll receive contact information for your state and federal legislative representatives. You can also find your US House Representative here, and your US Senator here. Read Meghan Bausone's full article about protecting breast milk as a human right here: https://medium.com/@meghanbausone/breast-milk-is-a-human-right-a82b9efd40a#.ilw4s536i