Centers for Disease Control and Prevention
Centers for Disease Control and Prevention
End the FDA's Discriminatory Deferral Policy - Allow Gay Men to Donate Blood!
In the days after the 2016 massacre on the Pulse nightclub in Orlando, FL, lines wove around blood donation banks with people eager to help. Gay men, however, were turned away - a stinging insult to an already grieving community. In trying to do something good, these men were publicly humiliated by a screening questionnaire that equated their sexual identity to intravenous, non-prescription drug use and prostitution. Though it is undeniable that this original policy was critical in ensuring the safety of the national blood supply in the early days of the AIDS crisis, advancements in technology have rendered this ban unnecessary. When the first HIV-specific antibody test came out in 1987, the risk of HIV transmission from the blood supply was 1 in every 153,123 units of blood (assuming an 8-week incubation period during which HIV is undetectable). Four generations of testing later, modern HIV screening has near-perfect sensitivity, minimizing the incubation window to 9 to 14 days. Today, the risk of transmitting HIV through a blood transfusion is 1 in 1.5 million. By comparison, the odds of getting struck by lightning are 1 in 960,000. The logic of the current deferral policy is laughably illogical: a man who is in a monogamous relationship with another man and undergoes frequent HIV testing (every three to six months) with repeatedly negative results is prohibited from donating blood. On the other hand, a straight man who has frequent unprotected sex with female partners of unknown HIV status is not barred from donating. Similarly, a woman who has unprotected anal sex with partners of unknown HIV status is similarly allowed to donate. In 2015, the policy was changed from a lifetime ban to a twelve-month deferral period - a step in the right direction, but unrealistically requiring that MSM remain celibate for an entire year. This discriminatory policy continues to perpetuate the association between gay sex, risky sex, and HIV. The FDA would better protect the blood supply by modifying their policy to defer individuals who have had unprotected sex with partners of unknown HIV status in the two weeks prior to donation - regardless of gender or sexual orientation. With this in mind, we, the members of the LGBTQ community and our allies, demand that the FDA reevaluate their outdated discriminatory blood donation policy, and instead implement one that does a better job protecting the blood supply by redefining the criteria for deferral to anyone participating in risky sexual behavior - not a blanket ban on a community eager to do their part to save lives!
KASIE'S LAW - Power to parents over mentally ill children's refusal of medical care
PLEASE SUPPORT KASIE’S LAW, IN MEMORY OF MY DAUGHTER KASIE DEL OTEROMy 16-year old daughter, Kasie Del Otero of Franklin Lakes, NJ died on Sunday 4/29/2018 at around 5:30am. She committed suicide by stepping in front of a NJ Transit train. Kasie was a beautiful, funny, smart teenager who was a great daughter, sister and friend to everyone who knew her. We lost her after battling with depression and bulimia the last 2 years of her short life. We could have saved her from herself if the current patient consent laws and psychiatric care program allowedparents to override children’s right to refuse treatment, and forced treatment centers to care for patients in need. I also feel that the emergency room should have done better as they seemed incapable to handle psychiatric patients. I feel that real change is needed to better help children like Kasie and their families. The laws and medical protocols must change to empower the parents of children whosedecision-making ability is compromised in any way, shape or form. Proposed New legislation (“KASIE’S LAW”) is needed to: 1) Empower parents/guardians with right to overrule decision-making of their dependents for conditions/pre-existing conditions where their decision-making capacity is compromised, like mental illnesses like depression or eating disorders. 2) Treatment centers currently can deny depression and eating disorder patients the treatment they need unless patients are willing participants. This must change. These patients need to be treated. 3) Psychiatrists should be consulted at all times!! My own daughter was at the emergency room a week before she took her life. I was forced to call 911 and be taken by ambulance because she would not go willingly. However, only her immediate physical needs were treated and then was referred to a social worker. Even with her long 2-year history (SUICIDE ATTEMPT, TREATMENT CENTERS, DEPRESSION, EATING DISORDER AND OFF MEDICATION) IT WAS OPTIONALTO CONSULT A PSYCHIATRIST IN EMERGENCY ROOM. IT WAS ALSO OPTIONAL TO CONSULT WITH ANY/ALL OF HER TREATING DOCTORS PRIOR TO HER RELEASE. Would they have done the same for a cancer or a heart patient? I would appreciate if you could find the time to support Kasie’s Law to empower parents to save their children. We need to protect children with mental illnesses and their families. Please call your members of congress and the white house to enact this law now, and share this message with as many folks as possible. Thank you,Tom Del Otero, Kasie's Dad INFORMATION I WISHED I HAD KNOWN BEFORE Source: American Foundation for Suicide Prevention Suicide• In 2015 (latest available data), there were 44,193 reported suicide deaths in the U.S.• Suicide is the 2nd leading cause of death for those between the ages of 15 and 34 in the United States.• Currently, suicide is the 10th leading cause of death in the United States.• A person dies by suicide about every 12.8 minutes in the United States.• Every day, approximately 121 Americans take their own life.• Ninety percent of all people who die by suicide have a diagnosable psychiatric disorder at the time of their death.• There are four male suicides for every female suicide, but three times as many females as males attempt suicide.• 494,169 people visited a hospital for injuries due to self-harm behavior, suggesting that approximately 12 people harm themselves (not necessarily intending to take their lives) for every reported death by suicide. Depression• 25 million Americans suffer from depression each year.• Over 50 percent of all people who die by suicide suffer from major depression. If one includes alcoholics who are depressed, this figure rises to over 75 percent.• Depression affects nearly 5-8 percent of Americans ages 18 and over in a given year.• More Americans suffer from depression than coronary heart disease, cancer, and HIV/AIDS.• Depression is among the most treatable of psychiatric illnesses. Between 80 percent and 90 percent of people with depression respond positively to treatment, and almost all patients gain some relief from their symptoms.But first, depression has to be recognized.• The best way to prevent suicide is through early detection, diagnosis, and treatment of depression and other mood disorders. Learn more at www.afsp.org or call 888-333-AFSP. Figures from the Centers for Disease Control and Prevention Data & Statistics Fatal Injury Report for 2015 (Source: www.Youth.gov• Suicide is the second leading cause of death among youth age 15-24.• Approximately one out of every 15 high school students reports attempting suicide each year.• One out of every 53 high school students reports having made a suicide attempt that was serious enough to be treated by a doctor or a nurse.• For each suicide death among young people, there may be as many as 100 to 200 suicide attempts.• For some groups of youth—including those who are involved in the child welfare and juvenile justice systems; lesbian, gay, bisexual and transgender; American Indian/Alaska Native; and military service members—the incidence of suicidal behavior is even higher. Current useful state laws in some situations:- Casey’s Law – Court process in some states to force patients to commit patients suffering from drug abuse (tooslow for patients like Kasie).- Baker Act (Florida) - Forces a max. of 72 hour evaluation for any patient whose decision making capacity may becompromised. A good first step, but falls short from what’s needed for patients like Kasie Very good article on Depression: “Why people kill themselves”, by Dr. Mark Goulston: https://medium.com/@mgoulston/why-people-kill-themselves-its-not-depression-44113406ac79
CONGRESS MUST ESTABLISH A FIRST RESPONDER PFAS TASK FORCE TO PROTECT AMERICA's BRAVEST.
America's firefighters have been on the front line of PFOA/PFOS exposure since 1983 while using it in AFFF, being sprayed in our eyes, mouth, nose, wading in it, having it adhere to our PPE/personal protection ensembles/turnout gear, and exposing our families to this toxin after bringing home contaminated gear. We were not aware how toxic this substance was. We have just recently learned our turnout gear, or PPE has been impregnated with PFOA since 1999 (at least) to make our gear water repellent so that it meets the NFPA 1971 water resistance standards for firefighting. We were not made aware. We do not know how much. Only the chemical giants have that information. We sweat in this gear, our body temperature rises and our skin absorbs these toxins. We start our careers in our child bearing years. PFOA and PFOS have been labeled under CA Prop65 due to potential for reproductive (and developmental) TOXICITY See here: https://oehha.ca.gov/proposition-65/crnr/chemicals-listed-effective-november-10-2017-known-state-california-cause … In 2006 the European Chemical Agency (ECHA) notified the chemical giants that they would be restricting PFOA in 'textiles'. One of those textiles is firefighter PPE. By 2012 PFOA was designated Substance of Very High Concern by the ECHA. Turnout gear manufacturers were made aware of the decision to restrict the amount of PFOA in turnout gear to 25ppb and 'precursors' to 1ppm. As of today, January 18, 2018, they have not advised the US of this issue formally. While the manufacturers are discussing and teaching about the issue in Europe, they have not mentioned it here. They have only minimized the issue when it came up recently by way of a firefighting article here in the US. https://station-pride.com/2017/03/28/the-real-cancer-in-your-gear/ We are in a particularly high risk exposure setting as our gear has been degrading in our fire stations where we work, eat, sleep, since 1999. The coating on our gear degrades in UV lighting, in many stations our gear is stored in open lighting next to the engines and trucks in our bays. There may be as many as 30 sets of gear in a station in one week. The gear is designed to be used for 5 years and 30 washings. Over the course of 20 years we have had thousands of sets of gear in our stations releasing particles of PFOA into our 'home'. As of this date, there has not been a PFAS dust study done in our stations. Yet, biomonitoring has shown firefighters PFOA serum tested in ranges from 243 ng/mL to 423 ng/mL from a 'yet unknown source'. The 'DuPont Water Works' plant workers were high at 32 ng/mL. Adding to this IDLH issue is the October 2, 2017 NH DES letter to every fire station in NH that of 6 of 7 New Hampshire fire stations water wells tested at 'elevated' levels of PFAS. https://www4.des.state.nh.us/nh-pfas-investigation/wp-content/uploads/2017/11/Fire_Department_H20Sample.pdf Since September 5, 2017, Environmental Attorney Robert Bilott, along with C8 Science panel member Dr Paul A Brooks, and Fire Chief Jeffrey Hermes have demanded testing and studies of the EPA, CDC/ATSDR, and US Attorney General on behalf of all responders in the US due to their exposure from these areas. See letter here: https://www.documentcloud.org/documents/3988104-Firefighter-Letter.html On January 16, 2018 Attorney Bilott did receive a reply from Patrick Breysee PhD CIH Dir ATSDR indicating the monies Attorney Bilott requested (7,000,000) from the recently found funds available, was not yet designated for FIREFIGHTERS. We seek immediate support and decisiveness that these funds are designated for the front line, who while already at a very high risk for cancer., was unaware of the toxin in our PPE and the extent of the toxicity of PFAS in the AFFF. The manufacturers were well awaare of the extent and danger of this toxin, yet chose to not issue the hazard in warning labels in our gear. They actually belong to a group called Fire and Emergency Manufacturers Association (FEMSA) THAT FOUGHT FOR, AND WON THE RIGHT, TO NOT PUT WARNING LABELS IN OUR GEAR. https://www.femsa.org/whois_femsa/history/ These same manufacturers sit at our NFPA standards committees deciding everything from the balance of a helmet to the width of reflective tape on our gear. Not once did they disclose this danger to us. These are very complicated drawn out committees, at any time a manufacturer could have provided a 'notice of concern'. They did not. We cannot wait one more day for money to be found while we don gear that is coated in PFAS and use AFFF that may or may not be safe. We have sacrificed enough, we have given enough of ourselves, we expect immediate action from each and every individual on this petition. We deserve nothing less. We have been kicked down the road long enough in this ruse of deception and omission of the toxic hazards of PFAS from the manufactures that provide our PPE and AFFF. Charge this back on them if need be. The PPE industry alone in the USA is over 5 billion dollars. On August 11, 2017, we received the test results of NEW, NEVER WORN 2004 turnout gear. We had it tested to determine if there could still be PFOA in the gear after 13 years. The testing was performed by Professor of Physics, Graham Peaslee, Notre Dame, IN. Here are his results: Dear Diane, Sorry for the slow response, but we ran your samples earlier this week (on Tuesday), and I have just looked through the results for four samples: Left Under Arm firefighting suit FF-LUAMoisture Barrier firefighting suit FF-MBTLRight Sleeve by Cuff firefighting suit FF-RSCTail firefighting suit FF-T The Moisture Barrier sample actually had two parts to it, a thin underlining fabric and the thicker outer layer. We labeled the thin fabric as MBTL2. The results are pretty unambiguous...Everything except that thin underlining fabric was heavily fluorinated: Sample counts/uC error ppm F Percent FFF-LUA 24682 2472 10555 1.62FF-MBTL 57530 5756 24603 3.77FF-MTBL2 485 98 207 0.06FF-RSC 20691 2073 8849 1.36FF-T 18212 1826 7789 1.19840 ppm F std 1964 128 We typically measure in parts-per-million, but these fabrics are so heavily fluorinated, they are better measured in percent fluorine content...each of the pieces contained between ~1 and ~4% fluorine (last column on right). This would typically indicate a very heavy treatment in PFAS chemicals to impart water and flame resistance to the fabric. We have seen values like this before, but typically only on fire-resistant fabrics. We also looked at these fabrics yesterday with an X-ray Fluorescence unit, just to test for the presence of other flame retardants in the material, and we did not see any chlorinated nor brominated compounds nor heavy metals, so it looks like the flame-resistant properties of these materials are being given by fluorinated compounds alone... I hope this information is useful to you. If you want to know which specific PFAS compounds are present in the fabrics (it can often be a mixture), then you would have to perform a chemical measurement using an instrument called Liquid-Chromotrography - Tandem Mass Spectrometry (LC-MS/MS). There are commercial companies that make these measurements (TestAmerica, for example), but they are complicated measurements and they typically charge several hundred dollars for a single analysis. Please let me know if there is any other information I can provide for you.... GRAHAM ************************************************************* UPDATE **** JANUARY 29, 2018 **** TESTING RESULTS CONFIRM PFOA PRESENT IN EXCESSIVE AMOUNTS IN 2004, NEW/NEVER-WORN STRUCTURAL PPE, SEE LINK FROM PROFESSOR OF PHYSICS AT NOTRE DAME, GRAHAM PEASLEE: Hi Diane, I have some LC-MS/MS results from an academic lab that I trust...they took the four pieces of clothing you sent me and took a small piece of each and rinsed it three times in heated methanol, and analyzed the rinse for the presence of 78 different PFAS. We know from previous textile work that this only will get some small fraction of what is adhered to the fabrics, but it will identify what is there. The results look something like this: Concentration (ng/g)Item PFBA PFHxA PFHpA PFOA PFNA PFDA PFTeDA FHUEARight Sleeve <LOQ 14 <LOQ <LOD 121 66 <LOD <LODLeft Under Arm <LOQ <LOD 13 116 74 57 <LOD <LODMoisture barrier <LOQ <LOD <LOD 41 <LOD 25 <LOD <LODTail <LOQ <LOD 14 <LOD 84 28 30 <LODEnvelope 46 109 <LOD <LOD <LOD <LOD <LOD 40 A quick explanation...these are the 7 diffferent PFAS that showed up above level of detection (LOD), or above level of quantification (LOQ). The PFBA are C4 acids, the PFHxA are C6 acids, the PFHpA are C7 acids, the PFOA are C8 acids, the PFNA are C9 acids, and the PFDA are C10 acids, and the last one is a C11 acid. The first four rows are your four fabric samples with concentrations in ppb, and the last sample is the brown envelope in which the samples were shipped, so it is possible it contained some short-chained PFAS that might have contaminated the right sleeve sample. If you want to send these to a commercial lab at some point, you will want to put them in individual ziploc bags. In summary, there are C8, C9 and C10 PFAS found on each garment, but less on the moisture barrier. These are "long-chain" PFAS, and the majority seems to be heavier than PFOA, although there is certainly PFOA present. Combined with the PIGE results which showed high levels of F present, and a methanol rinse that only removes a small fraction for analysis I would guess there is plenty of these long-chain PFAS applied to these garment samples. The lab also did a GC/MS test for volatile PFAS, and found only volatile PFAS on the Tail sample, but with fairly high concentrations: 6:2 FTOH (120 ng/g), 8:2 FTOH (3600 ng/g), and 10:2 FTOH (1300 ng/g) (with all other analytes below detection.) The fact that both the GC and LC/MS data are indicating C8 and C10 in the samples helps confirm the long-chain observation. To my knowledge, this type of long-chain PFAS chemistry is not typically used in textiles these days...so it is unusual to see them in samples. I trust these data, and you are can share these results with your colleagues - but if you want to go further with the data in a court of law or elsewhere, you would have to have a commercial lab confirm these results...and that is pricey I know, but now you know what to look for at least. Armed with this information I bet you can start asking who used these long-chain PFAS commercially in fire-resistant clothing. I wish you luck in your investigation. Sorry this took so long, but all the labs are very busy these days. GRAHAM from Diane : What is important to note here, is that this testing will only remove a fraction of the actual content in the fabric. So that fraction, was 5 times the ECHA limit of 25 ppb PFOA. 5 times.... just that fraction.. what were we wearing? What are we wearing? ****************************************************************************** ***** BOMBSHELL **** 2.20.2018 ******** IN 1992.. DuPont's own scientists found PFOA CAUSES *** YES, CAUSES *** TESTICULAR CANCER. THE NUMBER ONE CANCER IN THE FIRE SERVICE. THEY KNEW WE WEAR THIS GEAR NEXT TO OUR REPRODUCTIVE ORGANS FOR HOURS AT A TIME OVER YEARS AND YEARS... THEY HAVE SAID NOTHING.... EXCEPT TO FOCUS ON THE PRODUCTS OF COMBUSTION.. READ PAGE 29: THIS IS A DuPONT SHAREHOLDERS DOCUMENT. YOU, THE END USER WERE LEFT OUT...... https://www.healthandenvironment.org/uploads-old/DuPont_Shareholders_Know_More.pdf In addition to causing testicular tumors, PFOA causes many other effects on the male reproductive system,including increased size of the testes, epididymides and seminal vesicles, and decreased prostate in rats[2, 6]. In the female, PFOA causes mammary tumors and cellular effects on the ovary . ****************************************************** Senators, Congresspersons, please, we must have your immediate attention. We have been poisoned by the companies that have a huge money stake in every aspect of the fire service. We need water testing in our stations, dust studies in our stations, new technology that does not require PFAS and precursors for coatings that will form PFOA to meet our NFPA Standards, we need serum testing to follow us thorough our careers. We sacrifice enough. Please act. Respectfully, Diane Cotter Fireman's Wife
Exclude Chronic Pain Patients From The Stronghold Of The CDC Guidelines
Everyone knows about the opioid crisis that currently exists in the United States. It is no secret that the government is cracking down on doctors who write prescriptions for pain medication for their patients if they do so without good cause. I don’t think that there is one single citizen who would disagree with the decision to tighten the guidelines for doctors who carelessly write prescriptions for pain medications that aren’t warranted. But when it comes down to a patient being diagnosed with a chronic illness, such as CRPS, Sarcoidosis, Osteoarthritis, Arachnoiditis, Lupus, or Fibromyalgia (just to name a few), I think it is reasonable to say that a doctor should be able to use their judgment, evaluate a patient for symptoms related to their illness, and prescribe medications accordingly, even if those medications are narcotics. We now live in a society where a drug addict can walk into a police station or hospital, say that they are an addict and that they want help, and they are given what? METHADONE! What is methadone?? It’s another drug! And after countless hours of research, I can’t find ANY evidence of how this has improved the opioid situation on the streets. However, you have people that hold jobs, pay bills, have been diagnosed with legitimate illnesses, and they can’t get the medications they need to control their pain because of the guidelines set forth by the CDC. There are so many possible solutions that may lead to progress on both ends of the spectrum, but nobody is putting forth any effort for the pain patients – they’re only looking at the death rate of the abusers who either use illegal drugs, or use synthetic or stolen medications to satisfy their habits. I suffer from two autoimmune diseases (and have to be tested for a third). The two confirmed diseases are tag teaming my joints, and making it very painful for me to function with any type of normality. It’s gotten to the point where I am in pain 24 hours a day, 7 days a week. Where is my assistance? How am I supposed to pick myself up off the floor when my husband isn’t there to help me, because he works to support his family? Who is going to pay my bills when I have to miss work because I’m in such an incredible amount of pain that I can’t get out of my bed? What will happen when I reach a level where I will have to depend on medications to quell my pain? I’ll tell you exactly what is going to happen – I will not be able to get my medication because of irresponsible individuals who made the decision to pick up a needle and spoon, a straw, a joint, a pill, a handful of pills, or whatever their poison of CHOICE was. Where is this okay? Two words – it’s not. Where is it okay for insurance companies to deny testing for people that have obvious signs of illness? Where is it okay for a cancer patient to be denied his chemotherapy…or for a patient complaining of pain to be denied a simple MRI? And when they have to fight like hell to get the tests they so deserve to determine that they DO have an illness, where is it okay for them to be denied the medications they need to ease their pain? Where is it okay that our Veterans are being put in the same situation, after they incur injury or illness after they gave of themselves to protect our country and our freedom? Another two words – it’s not. How many people have been killed by drunk drivers, yet alcohol is still legal? Where is the difference?? According to the CDC and the FDA in a recently published article, the biggest culprits responsible for opioid-related overdoses and fatalities are listed as follows, in order of those that are mostly responsible: Heroin 8,412Cocaine 5,836Oxycodone 5,417Alprazolam 4,217Fentanyl 4,200Morphine 4,022Methamphetamine 3,728Methadone 3,495Hydrocodone 3,274Diazepam 1,729 Also, between the years of 2010 and 2014, 3/4 of the fatalities that involved oxycodone and hydrocodone involved other substances - aka MULTIPLE drugs, and 15% of those fatalities involved alcohol. Please – eliminate legitimately ill patients from the CDC guidelines – find a way to identify them as chronically ill patients, and start enforcing the laws for people who illegally abuse any type of drug, no matter the drug. To make people suffer for no other reason than another person’s irresponsible choices is just cruel and inhumane! There is a distinct difference between abuse, addiction, and dependency. And people who are truly ill DEPEND on their medications to live and function! For once in your lives, do the right thing and come up with a solution that will benefit everyone!
Stop the HPV VACCINE. It killed my son!
My 14 year old son received the 1st dose of the deadly and useless HPV VACCINE on June 29th 2018. And after only 46 days later, he passed away August 14th 2018. We took him to our local ER on the night of August 8th. They did some testing for any virus or infection and all blood work came back negative. The Dr's suggested my son be moved to Children's Hospital in Iowa City. It was there that the Dr's discovered my son had encephalitis. The Neurologist then came in and diagnosed him with ADEM DISEASE which is short for (acute demyelinating encephalomyelitis, it is a rare autoimmune disease marked by a sudden, widespread attack of inflammation in the brain and spinal cord). Adem disease, paralysis, seizures, headaches and etc. From that point on my son spiraled downhill fast. He then went into respiratory failure, paralysis to the left side of his body, then started having seizures. He was being treated with extremely high doses of steroids to combat the swelling in his brain. His case was so severe at this point that they had no other choice but to perform a craniotomy on the right side of his skull to help with brain swelling. His brain continued to swell and he ended up having a brain herniation. He was pronounced brain dead on August 14th 2018. My son was only 14 years old, bright, smart, handsome, an awesome baseball player. He was on the honor roll and just 2 days from starting high school. He died as a direct result of the HPV VACCINE. My son should have never been given this medicine as he has NO CERVIX! This drug has not been proven to prevent prevent cervical cancer. Japan removed this drug in 2014 from the mandatory schedule because of so many adverse reactions. My son Christopher Bunch and another child named Colton Berrett both died as a result of the HPV VACCINE. There are hundreds of other children that have died and thousands more that have been injured. Please sign this petition to stop this vaccine from becoming mandatory in all states.
Stop Taking Away Needed Meds For Chronic Pain Patients
Pain. You have felt it at some point in your life resulting from various reasons. Usually the pain is quick to fade and it is forgotten about. Acute pain is pain that lasts a maximum of three to six months. Where as chronic pain is pain that lasts for an unspecified amount of time that lasts longer than three months. This petition will be focusing on chronic pain as it is the pain that affects patients the longest, it has the most impact on the patient's life, and it is now the pain that is being majorly undertreated leading to consequences that can't be reversed. Chronic pain is more often than not a pain that over the counter NSAID's like motrin or tylenol do not help whatsoever. A doctor is then sought out to see what the problem is and what can be done to help improve the quality of life. One really big problem is when doctors are afraid to prescribe the medication that the patient needs to help gain back some quality of life and to help relieve some of the pain. It is understood that if possible, nonmedication therapies are tried first and then if that fails the doctor will go up the scale from the absolute weakest and at the lowest theraputic dose to try to help the patient regain function or quality of life. The problem really starts to affect patients when alternative therapies cannot be used due to the disease. Many doctors are either incorrectly taught about many rare diseases such as Tarlov Cyst Disease and Adhesive Arachnoiditis so the patient is put between a rock and a hard spot. I have tarlov cyst disease and I also have adhesive arachnoiditis. I had surgery for the tarlov cyst, which failed less than 3 months later, and also ended up with adhesive arachnoiditis due to the surgery and I wasn't warned about it being a risk for the surgery. I am now disabled at 22 and unable to complete my degree for biology. I am bed bound because sitting, standing, and walking majorly increase the pain to levels that are hard to comprehend even for myself. The pain is there 24/7, it is both entire legs as well as my lower legs. It feels like molten solder encases all of that area. Can you imagine living with that 24/7 and not knowing if you will ever get one pain free day ever again? My arms hurt when I have a flare up, which is when the pain is 1.5 times worse than before. I even have numbness in my right hand that has been there for a month and I can't feel anything on the numb spots because it is dead numb but still has a pulse. My other hand has been trying to do the same. I have daily migraines and problems with my vision as well as problems with my bowel and bladder thanks to nerve dammage that affects them. I use heating pads and electric blankets on my legs and hips like the neurosurgeon told me to do to try to help the pain and now have second degree burns on my legs and hips and lower back as well as significant scarring in those areas as well. I have tried the meds for nerve pain, chronic pain, as well as many others! I am allergic to many topical meds, oral meds, and many other things dont work or metabolize like they should thanks to my genetics. I am now going through even more pain thanks to a decrease in my meds due to the clinic I use being audited by the DEA. I am in so much pain that I have 3 heating pads on high, 2 electric blankets on top of that, two gel lidocaine patches, as well as using bluegoo to try to help and binaural beats and meditation. I have had doctors try to force epidurals on me telling me they were safe and that its fine for arachnoiditis patients despite the papers I had in my hands from the lead researcher for arachnoiditis saying otherwise. That doctor then told me I was going to kill myself and that he wasn't willing to risk his license for me to get relief. Why am I getting punished for having not just one but two rare diseases that I have no control over? The tarlov cyst was misdiagnosed multiple times and I ended up diagnosing it and sending myself to a specialist to get it confirmed. It eroded my sacrum to the point where it is transparent. The cyst was filled with spinal fluid and over 4 cm at the time of surgery. I was continuously put down by doctors, told it was my weight, told it was my fault, even told that I was too young to have back pain! The pain is very real and has gotten to the point where it has paralyzed me at times. This system needs to change. Stop punishing chronic patients that follow the rules! Stop punishing patients for a problem that was not started by us! Stop giving excuses for why the recommendations should stay in place! Stop treating us like criminals! Give us back a quality of life! Stop the increase of chronic pain patient suicide due to LACK of PROPER PAIN RELIEF! Put rules in place that PROTECT chronic pain patients! Want to help prevent accidental overdoses? Make it mandatory that all narcotic prescriptions have a built in lid timer that count up from the time it was last taken. Keeping track of the last dose is hard when the med is wearing off and the pain is raging. Make the public more aware of the difference between addiction (behavior based) and dependence (chemical based, no cravings). I have talked patients down from comitting suicide and have seen the pain commu nity mourn when a beloved member takes their life because the pain became too much to handle. Don't wait until this affects you as well! Help speak up for patients nationwide that need YOUR help to tell our government that they NEED to let the DOCTORS do their job, they went to school to do just that. Chances are, someone you know or love has been affected by this and you may not even know. Help advocate for the patients that need your help and change a life and you may just save a life!
"Mandatory blood test, BNP, Save Moms from Pregnancy Heart Failure"
Help us make the BNP test mandatory in pregnancy blood test screenings. By making the BNP test part of the pregnancy blood test screenings we can hopefully catch a pregnancy-related heart failure condition called Peripartum Cardiomyopathy early and help decrease the maternal mortality/morbidity rate. This is a simple low-cost test that can save moms which in turn save families. It is no different than taking the typical diabetes blood test that is mandatory in pregnancy screenings. "Brain natriuretic peptide (BNP) test is a blood test that measures levels of a protein called BPN that is made by your heart and blood vessels. BNP levels are higher than normal when you have heart failure."
CONTAMINATED BLOOD SUPPLY!!!!!
Lyme Disease is a devastating disease that wreaks havoc on nearly every internal body system. It's often mis-diagnosed leaving many people without knowledge of these organisms living in their bodies. These people may so kindly donate blood because they are unaware of any such disease. The blood collection centers do test for certain diseases like, Hepatitis B, C, West Nile and AIDS. However there are no protocols in place to test the blood donations for the presence of Borrelia Burgdorferi or the 300+ co-infections. According to studies by NIH and the CDC, it is confirmed that Borrelia Burgdorferi can survive being stored in a blood bag. It has also been proven in a laboratory using mice that the Lyme bacteria can successfully be transmitted via transfusion. This is a HUGE PROBLEM!!!!!! Please sign this petition to protect our recipients of blood donations and STOP the spread of Lyme Disease. With this petition we ask three things: 1. Check the entire Nations current blood supply for contamination and dispose of any unsafe supply. 2. Add Lyme testing to the protocol when receiving donated blood. 3. Investigate the CDC, as their Lyme guidelines are seriously outdated. Borrelia Burdorferi and it's co-infections are blood borne infectious diseases! This needs immediate attention before one more person becomes infected. There have already been documented cases of Babesia transmission via transfusion back in 2012, however the CDC, nor any other agencies turned their so called concern into change. Lyme Disease is a world wide Pandemic.
Christopher's Bill : Stop the HPV VACCINE Mandate
My 14 year old son received the 1st dose of the deadly and useless HPV VACCINE on June 29th 2018 and after only 46 days later he passed away on August 14th 2018. We took him to our local ER on the night of August 8th. They did testing for any virus or infection and all blood work came back negative. The Dr's suggested my son be moved to Children's Hospital in Iowa City. It was there that the Dr's performed a lumbar puncture and discovered my son had encephalitis. The Neurologist then came in and diagnosed him with ADEM DISEASE. From that point on my son spiraled downhill fast. He then had paralysis to the left side of his body, and then respiratory failure. He then started having seizures and was being treated with extremely high doses of steroids to combat the swelling in his brain. His case was so severe at this point that they had no other choice but to perform a craniotomy on the right side of his skull to help with brain swelling. His brain continued to swell and he ended up having a brain herniation. He was pronounced brain dead on August 14th 2018. My son was only 14 years old, bright, smart, handsome, awesome baseball player, he was on the honor roll and just 2 days from starting high school. He died as a direct result of the HPV VACCINE which is listed on the vaccine insert. My son should have never been given this medicine as he has NO CERVIX! This drug has not been proven to prevent prevent cervical cancer. Japan banned this drug in 2014 because of so many adverse reactions. My son Christopher Bunch and another child named Colton Berrett both died as a result of the HPV VACCINE. There are hundreds of children that have died and thousands more that have been injured. Please help us stop the government from making this a mandatory vaccine. United as ONE, Our voices will be heard.
Develop procedures and/or testing to separate addicts from pain sufferers!
As an advocate for chronic and intractable pain awareness and laws (and being a pain sufferer myself), I wrote this petition to appeal to you (President Trump, CDC, FDA and DEA) that we understand the war on drugs and wanting to stop the overdoses, abuse and addiction caused by illegal use of various substances (including opioids) is justified. However, it is causing harm to real chronic and intractable pain sufferers. The harm goes from a low to no quality of life to suicide! We deserve to be treated like human beings and taking away a big part of pain management is inhumane. Many strategies and options exist to treat chronic noncancer pain. Since chronic and intractable pain is not a single entity but may have myriad causes and perpetuating factors, these strategies and options vary from behavioral methods, alternative medicine, rehabilitation approaches and using several different medications, including opioids to help the pain sufferer. We now are looked at as addicts and abusers when in fact many of the pain patients that I have come in contact with throughout the world are just the opposite. They follow their doctor's guidelines perfectly. The biggest question that is asked all the time is "what does it feel like to get high"? Pain patients medications are going to the areas of the body to help their pain and thus no extra medication to get high. Treating pain sufferers is very difficult. Treatment plans made by a team of doctors is the best way. This includes, internal medical doctors, psychologists, occupational therapists. physical therapists, dietitians, alternative medical doctors, holistic medicine and homeopathic medications. I realize this is a lot of specialists, but I feel they at least should be available to the patients. Our bodies are all different (as you know) so using a one size fits all way of treating pain will not work! We have no problem with some all-inclusive pain treatment plan using other methods with the opiate treatment, but just cutting people down to a one size fits all approach to opiates is insane and will cause more suicides with the pain population. You may help the abusers, overdoses, and deaths from those individuals you are trying to help, but you will cause more suicides and deaths from those pain patients who really need their medications. This makes our pain sufferers collateral damage! We are tired of being collateral damage in the "war on drugs"! This war has been going on a long time and you have all had issues separating addicts and abusers from those people who have chronic and intractable and need opiates and other medications to have some semblance of normalcy. This is a violation of our human rights! Please stop the suicides and treat chronic and intractable pain sufferers with treatments that their physician deems appropriate!