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.
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
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
Arkansas votes to decrease therapy for special needs children. Let me tell you why not.
So, Arkansas is voting to reduce the amount of therapies for children with special needs? This is absolutely outrageous and disheartening for a so many reasons.When Aidan was first diagnosed with Mosaic Down syndrome at six month of age I was not a nurse - I was a very worried parent who did lots of research attempting to find out what to do to give my child the best chance possible in life. During this research I became upset knowing that he had missed the first part of his life for the opportunity to receive physical, occupational, and speech therapies. Early intervention through these therapies is key in helping kids with special needs in their development.First of all, as parents of a special needs child I feel we have done everything thus far we can to help Aidan reach his maximum potential. Since the age of 18 months we have sent Aidan to an amazing school in Little Rock called Access, that provides him with the help and therapy he needs to assist in development. While you would think that a child diagnosed with Down syndrome would have plenty of opportunity for therapy funding, this is not true. Primary insurance does not pay for therapy services, which means that in addition to a primary insurance we must pay out of pocket for a type of Arkansas Medicaid insurance called TEFRA that does cover therapy services. The combination of both the private special needs school and TEFRA insurance is not an insignificant cost, in fact, I feel terrible for those individuals that have kids with special needs who do not have the luxury to afford a wonderful school like Access. To qualify for therapy services each child must be evaluated biannually to determine (per Medicaid standards) wether or not they "qualify" for these services. Just last year Aidan did not qualify for any physical therapy, even though he continuously scores extremely low on these evaluations. The "qualifications" remain so high, that even if a child is considered on a less than "profoundly delayed" level, therapy services may be reduced or denied. To give you an idea of how instrumental therapy has been for Aidan - I can tell a drastic difference just talking to Aidan in his goals, objectives, and therapy styles from the speech therapist he had a few months ago verses the one he currently has. I could also tell a significant difference in when Aidan received one hour of physical therapy a week verses none.If a child must be profoundly delayed to receive therapy services, how much more can you raise the bar to disqualify children for these necessary services?I cannot imagine why, of all things, Arkansas would choose to cut funding for this incredibly important service, especially when most individuals who are trying to give their children the best chance possible and already have unimaginable struggles ahead of them.
Make soap in restrooms accessible to people of all statures
I have a simple problem that with support will hopefully have a simple fix. I am a little person, standing at four feet tall. I have learned to thrive in a world that was not built for me. However, there is one problem that looms over me when I am in public spaces (which is often). I can almost never reach the soap dispensers in public restrooms, both handicap and non-handicap accessible. The ADA requires that a soap dispenser be no more than four feet from the floor but does not specify on what wall the soap dispenser be mounted. Commonly, the dispenser is mounted on the wall parallel to the individual washing their hands. This means that when I go to wash my hands there is a countertop acting as a barrier between me and the soap which is so high up and far away that there is no way I can reach it. My hope is to reach out to State Reps and Senators to give this issue a voice. This is not only my little problem though, my mother, father, and brother are all little people and there are thousands of little people all over the United States that would benefit from this simple change.
After serving 24 years in prison, Michael deserves a second chance. Asking for appeal!
Mike is 44 and has served 24 years in prison for self defense. Mike is the one that called the police right away and told them what happened. He had a court appointed lawyer that did not defend him. Mike told him every single detail of that day and the time leading up to that day and his lawyer withheld that information. He told Mike to plead guilty and take a deal. He was only 20. He was young and scared and thought his lawyer knew what to do. Mike is a model inmate. He hasn't had any charges since 2003. He gave his heart to the Lord over 7 years ago and preaches at the prison every week. All of the guards, the Chaplin, and many others that know him say that he is a good man, no danger to society, there is absolutely no reason for him to be kept there, and he should be set free. He has taken class after class, and has been working in prison industries for 13 years. Mike went up for a parole hearing on Oct 25th and was denied once again. The board was very quick and didn't let him present his case. All we are asking for is another hearing where the facts, letters, and accomplishments can be heard. I believe in this man 100%. Even the other inmates heard that day were in and out of there within 2-3 minutes. They all deserve a fair hearing and for their time spent in prison, their accomplishments, and their disiplinanary records to be looked at and considered. There are many innocent men and women in prison. Even if they did The crime, nature and seriousness of the crime will never, ever change! The Bible says forgive 70x7. Everybody makes mistakes and in God's eyes, they are all the same. Prison is overcrowded and the good, reformed men and women should get out. They all deserve a second chance. Parole is not entitled, but earned so the ones that have earned it deserve a chance. Please join me in signing this petition.