United States Department of Health and Human Services
United States Department of Health and Human Services
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/
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
Stop ALL Mandatory Vaccination in ALL states.
As we see more and more of our constitutional rights and parental rights being stripped from us... WE THE PEOPLE ask that ALL vaccines be made optional as they had been in the past and that health departments in every state continue or go back to offering vaccine exemptions to those parents who feel the need to not vaccinate their children. WE THE PEOPLE do not believe children are to be possessions of the state. Our children were not given to the state to raise. They were given to us by God. As their parents we have parental rights that we refuse to relinquish. Those rights include and are not limited to deciding WHAT gets injected into our children. We will not sit idly by as our parental rights get stripped away. We will come together as one and fight for our rights to protect our children and to raise our children the way we feel is best. Parents have the right to refuse vaccinations. Parents have the right to make their own informed decision as to whether to vaccinate or not. Parents have the right to be able to send their children to public schools with their exemptions. As you continue to see more and more rights being stripped away from parents you will see a unity that you have never seen before. As parents, vaxxers and non-vaxxers will come together to make sure the government understands that we do not believe our children are government property. We will fight back, for as long as we need to until our parental rights are respected. Since when does the government NOT work for the people? WE THE PEOPLE DEMAND all mandatory vaccination to cease and for exemptions to be brought back to states like California, Mississippi, and West Virginia. Give parents back the choice that was never yours to make with their children to begin with. Respectfully, Laire Lightner
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.
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.
Limit The Runaway Costs For Life-Supporting Medicines By Large Pharmaceutical Companies
I have Type 1 Diabetes, which is an autoimmune disorder. This means my body no longer supplies insulin. I have to monitor my blood glucose level closely and administer insulin every day. Some would think that insulin is a cure, however, it is not. It's my life support until a cure is found. I am always at risk for seizures, comas, or death. Diabetes currently ranks as the seventh leading cause of death in the United States. With over 29 million people diagnosed. Many including myself with this disease, rely on life-supporting medication known as Insulin to sustain life. According to the CDC in 2012 is estimated at a staggering $245 billion in costs. Diabetes costs continuing to rise each year. With $1 in $5 health care dollars being spent caring for someone with diabetes. Diabetes is a national epidemic. It’s expected that 1 in 3 Americans will have diabetes by 2050. Diabetes is one of the top most profitable diseases with a $35 billion market. With the elevated sales, it’s expected to reach $58 billion in 20 years. Pharmaceutical companies such as Sanofi and Novo Nordisk have continued to raise prices each year for life-sustaining insulin for those battling Diabetes. A drug that is in very high demand and the supply is almost endless. In 2013 here is a statement from Novo’s Chief Operating Officer Kaare Schultz: “Products that are of high value and that are protected in one way or another, they have the opportunity to take price increases without sort of messing up the whole system"(Bloomberg). There also has recently been a huge concern over the pay increases of CEO’s following price rises. Recently there has been an increase in Mylan Pharmaceutical Epipens used for emergency allergic reactions. Going from $56.64 to an astonishing $317.82. The company’s stock price also tripled. The CEO Heather Bresch received a 671% pay raise. What I would like to do is make a change. With Having Type 1 Diabetes for well over a decade, I have experienced managing this disease with and without insurance, and with periods of financial instability. I currently still have thousands of dollars in medical debt due to this. Insulin is a necessity to my life, for I will not survive without it. Diabetes management is poorly decreased when having to sacrifice your own health over other basic needs. Which also runs a higher risk of complications such as heart disease, kidney failure, blindness, and many others. I speak for all diseases and conditions dependent on life-supporting medicine. Those that are struggling in this economy as is. People all alike, trying to survive, raise a family, have lives, futures, and opportunities in this world. But the rise in prices on our life-sustaining medicine is only holding us back. We no longer wish to be trapped in the system. This price gouging must end! There should be new regulations in place. More specifically there should be price caps on these medications. Even though it's believed doing so will limit the amount of new drugs, it's also irrelevant to the fact most insurances tell patients what they can use regardless. Doing this will not only help millions in the short term but it will help millions of others towards a better future. To eliminate the ability to continuously raise prices on the sick gives more incentive for a cure. Please Sign, Share, to help limit runaway costs for life supporting medicines by large pharmaceutical companies. Help Those Who Need It The Most! We Thank You!! Follow me along my journey with Type 1 Diabetes at The Diabetic Journey
Save Lives: Require Spinal Muscular Atrophy Newborn Screening!
This petition is part of the Kick Away SMA Challenge created by Hunter's Hope to help end the deadly effects of SMA. We are proud The FAST Movement partnered with us for the Kick Away SMA Challenge, including the petition for newborn screening for SMA. Please join us in our efforts to require SMA newborn screening. SMA is the number one genetic killer of babies and children under the age of two. SMA robs the ability to move, swallow, and eventually breathe. However, the SMA community knows this will soon change. The SMA community watched in amazement as Type 1 SMA babies treated with Nusinersen didn't lose their ability to move, swallow, and breathe, but instead gained strength. Some even crawled and took steps — steps away from the deadly effects of SMA. Although there is no cure for SMA, each day a treatment comes closer to FDA approval. American companies Biogen, Inc. and Ionis Pharmaceuticals recently announced plans to file for FDA approval of Nusinersen. Biogen will also offer a global expanded access program (EAP) for SMA Type 1 patients who meet the EAP criteria. About SMA: • SMA is the leading genetic killer of babies and children under the age of two.• SMA is a motor neuron disease like ALS.• SMA robs the ability to move, swallow, and eventually breathe. • One in 40 unknowingly carries the gene responsible for SMA.• When two carriers have a baby, there is a 25% chance the baby will be unaffected, a 50% chance the baby will be a carrier, and a 25% chance the baby will have SMA.• One in 10,000 babies is born with SMA. Hunter's Story: Doctors diagnosed our son, Hunter Davis, with SMA Type 1 when he was just eight weeks old. They told us Hunter would lose the ability to move, eat, swallow, and eventually breathe. Doctors told us there was no cure, no treatment, and no hope. They said he would likely survive between three and five months. We were devastated beyond belief. The doctors were wrong. Hunter received his first life-saving treatment outside the US when he was sixteen weeks old. We travel to Mexico with Hunter every six weeks for his treatments. He is now five years old and has received forty-four treatments. The hardest part has been watching other babies and children with SMA continue to deteriorate or, worse, lose their battles with SMA. We wish newborn screening had been in place when Hunter was born. He would have benefited more from receiving his life-saving treatments sooner. Heidi's Story: Doctors diagnosed Heidi Hall with Type 1 Spinal Muscular Atrophy when she was three months old. Heidi could only move a little bit at her elbows at that time. Her body was as hypotonic as a little ragdoll’s, and she was unable to support her head whatsoever. Doctors told her family she would lose all ability to move, then the abilities to swallow and breathe, and ultimately suffocate on her own secretions or die of pneumonia. This was expected to happen within one year of her diagnosis. None of that happened. Heidi was accepted into a clinical trial for a possible treatment for SMA, a disease that has been viewed as hopeless, particularly the severe Type 1. It is not hopeless. The drug Nusinersen has reversed the course of Heidi’s disease. Rather than deteriorating, she has slowly gained strength and abilities. She is able to breathe on her own, swallow, and sit with support. She is now even able to propel herself in a small, manual wheelchair. Heidi began to receive the trial drug at five months and would have benefited even more from a diagnosis at birth that would have resulted in earlier intervention. Ella's Story: Ella Hunt was born beautiful and seemingly healthy. This changed at 4 months, when doctors diagnosed her with the fatal disease SMA Type 1. Doctors told Ella's parents she would soon die and sent them home, where they began the process of planning her funeral. Ella's parents quickly shifted gears and turned to the SMA community to help save her. Thanks to that help, Ella just turned five, and although SMA has weakened her body, her fighting spirit remains strong. Unlike Hunter and Heidi, Ella hasn't received treatments for her SMA. She lost the ability to move and swallow. However, with daily therapies and diet protocol at the helm, she and her family wait for the hope of treatments and ultimately a cure. Ella's family wishes more than anything that newborn screening and the Nusinersen treatment had been in place when she was born. SMA Trials Nearing FDA Approval: Although there is currently no FDA-approved treatment or cure for SMA, two clinical trials come closer to FDA approval each day. These treatments are Ionis's Nusinersen and AveXis's AVXS-101. They have the potential to make SMA a manageable disease. To be most effective, it is imperative treatments are administered as soon after birth as possible. Act Now: We believe the FDA will soon approve Nusinersen. The time to act is now. We can help end the deadly effects of SMA. Newborn screening must be in place when SMA treatments receive FDA approval. Every baby born with SMA should be afforded life-saving treatment. Please sign our petition asking states to enact legislation requiring SMA screening for newborns. Support our efforts by following us on Facebook: Kick Away SMA & Hunter's Hope.
Young Women Can and Do Get Breast Cancer:
Fight For Early Detection in Younger Women.
First, my auntForgotten Fighters was born more than 20 years ago on the evening my aunt passed away from breast cancer. Only in her late 30’s, she found a lump – but was told she was too young to have breast cancer. Unfortunately, she was diagnosed with late-stage breast cancer and lost her battle two years later, leaving two young children without their mother. I made a promise to her that I would get involved with a cause, fighting to lower the breast cancer screening age and pushing for early detection measures in young women. And then meI had reason to become even more passionate about my promise when I too was diagnosed with breast cancer at just 33. Since my aunt was not blood-related, I too had no family history of the disease. While lying on the biopsy table, I looked up at the diagnostic radiologist and said, “I am going to fight this screening age recommendation!”It’s time to fight for change! About this same time, the U.S. Preventive Services Task Force recommended that women should be regularly screened for breast cancer starting at age of 40. Diagnosed at just 33, this was already far too late for me. Then, incredibly, during my initial year of treatment, the recommendations took a giant step backwards when they pushed out the recommended screening age from 40 to 50. This only strengthened my determination to make good on my promise to my aunt and fight for early detection for young women who, like me, were literally fighting for our lives. As I fought my way through chemotherapy and radiation treatments, as well as several surgeries, the Forgotten Fighters initiative gave me the drive I needed to keep going on even the hardest days. Women in their 20’s and 30’s are being diagnosed with breast cancer every dayBreast cancer is not limited to those who have a family history, high body weight, lower activity level, consume more alcohol, or smoke. It can attack any woman, young or old, at any age. According to the Young Survival Coalition, more then 12,000 women under 40 will be diagnosed in 2016, and of that 12,000 only 15% will have a family history of Breast Cancer. But what is really scary is that this overlooked group—younger women in their 20’s and 30’s—are typically diagnosed with much more aggressive and further advanced forms of breast cancer. It is astonishing that the U.S. Government does not recommend any type of screening in young women. Even more, it suggests that younger woman should not even preform self-breast exams. This entirely contradicts the long-held suggestion that early detection saves lives. If it’s large enough to be felt, it already may be too late When a tumor is found during an annual screening—mammogram or ultrasound—it’s often caught long before it has grown to a size that can be felt. Unfortunately, women under the age of 50, especially those under 40, must rely on themselves to find a lump. We must show the U.S. Preventative Services Task Force that although we may be the smallest categories of women diagnosed with breast cancer, we still represent lives that could be saved. In the absence of Government-guided support, young women need to be our own breast advocates. We need to forget about the guidelines and get to know our bodies, check ourselves often, and push our medical team to do the same. Please join us in the fight to change the recommendation to a much earlier age and give younger women a fighting chance against breast cancer. Don't just do it for us, do it because it could someday be your daughter, your grand daughter, your mother, or your wife who is diagnosed. Please take a few moments to watch the video below, SIGN THE PETITION, like and share the Forgotten Fighters Facebook page, use the hashtag #ReverseTheRecommendation, and of course help me make this grassroots campaign go viral, by passing this message along to everyone you know.