Petition to Francis Collins, Jenni Glenn Gingery, Sean Tipton, Mary Green, Dr. Anuja Dokras, Dr. Barbara Levy, Jeremy Lazarus, Kevin Griffis, Polly Webster, Yvonne Lau, Richard Ricciardi
Recognize #PCOS Polycystic Ovary Syndrome as a significant health concern demanding national attention and government support.
Often unrecognized PCOS (Polycystic Ovary Syndrome) can cause many physical and emotional symptoms and for the up to 10% -20% of women and girls with Polycystic Ovary Syndrome Worldwide, it is estimated less than half know what it is or that they have it. Many women with PCOS, have gone years without the proper diagnosis and have silently suffered not knowing what was truly wrong. Even in today’s medically advanced era, women from around the country are experiencing the same lack of response from a medical community with little understanding of PCOS, except in cases when the infertility aspect are addressed. As a result, single women, adolescents, LGBT, older women and those not trying to get pregnant have little chance of being diagnosed!!! PCOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cancer, cardiovascular disease, stroke and kidney problems if left undiagnosed or untreated. This means PCOS contributes to some of the leading causes of death and disability in women today. So why does all of this this matter? PCOS is the leading cause of female infertility in women of reproductive age PCOS is the most common endocrine disorder in women PCOS affects an estimated 14 milluon reproductive-age women in the U.S. Over 50% of PCOS patients are obese 50% of PCOS patients have diabetes by age 40 Approximately 34% of women with #PCOS have #depression and 45% have anxiety. PCOS patients are at higher risk to develop high blood pressure, lipid disorders and coronary artery disease As many as 40% of PCOS patients as young as age 30-45 may have coronary calcification (a warning of heart attack risk) To put this in to further perspective... PCOS affects about 14 million women in the USA. That's more than the number of people diagnosed with Breast Cancer, Rheumatoid Arthritis, Multiple Sclerosis and Lupus combined!" - Louise Chang, MD Therefore, PCOS leaders, government officials, organizaions and advocates are charged with identifying strategies for achieving substantial improvement in the quality of health care and education for all patients living with the syndrome. PCOS patients can not and should not simply be dismissed as a gynecological or infertility problem! With more than half of the women with PCOS predestined to have prediabetes or type 2 diabetes before the age of 40, and increased risks for heart disease, stroke and endometrial cancer, finding ways to diagnose, screen and educate on the connection between thesee diseases to PCOS is imperative! Without the proper education and awareness of these connected disorders and the seriousness of PCOS as a metabolic endocrine disorder, these epidemics will continue to rise. The NIH needs to allocate more than 0.1% of funding to the approximately 30 million women affected in The United States and needs to engage and direct federal agencies to support more research, better physician education and better tools and resources for women and girls with the syndrome to live healthier lives with healthier outcomes!
Petition to Karen L Parker PhD MSW
Support Detransitioners at the National Institutes of Health
We, the undersigned of this petition, recognize detransitioners (those who desist from gender transition) as members of the diverse community of sexual and gender minorities whose healthcare needs the NIH SGMRO is intended to serve. We call upon the NIH SGMRO to acknowledge the existence of the growing detrans community, and to allocate funds in direct support of detransitioners' unique, urgent, and largely unmet medical needs. The Sexual & Gender Minority Research Office (SGMRO) was established in 2015 to coordinate SGM-related research and activities at the National Institutes of Health (NIH). Detransitioners are by nature gender-nonconformists, and many if not most are same-sex attracted. The Office's definition of "SGM" is rightfully broadly written, and it would include detrans folk: > Sexual and gender minority (SGM) populations include, but are not limited to, individuals who identify as lesbian, gay, bisexual, asexual, transgender, two-spirit, queer, and/or intersex. Individuals with same-sex or -gender attractions or behaviors and those with a difference in sex development are also included. These populations also encompass those who do not self-identify with one of these terms but whose sexual orientation, gender identity or expression, or reproductive development is characterized by non-binary constructs of sexual orientation, gender, and/or sex. Yet the SGMRO makes no mention of detransitioners on their website: Sorry, no results found for 'detrans'. Sorry, no results found for 'detransition'. Sorry, no results found for 'detransitioner'. Detransitioners are an emergent and growing community. Individual profiles have been increasingly published in recent years by BBC, CBC Radio Canada, HuffPost, IJR, Independent, Paper, Sky News, The Atlantic, The Daily Signal, The Guardian, The Stranger, The Sydney Morning Herald, Them, USA Today, and Vocativ. The world's first and largest online community of detransitioners, r/detrans, has grown in less than two years to include over 2,000 detransitioners and over 3,000 allies globally. Detransitioners' numbers and experiences have long been downplayed by unreasonable terminologies and methodologies within the medical community. Even worse, new and unbiased attempts at scientific research into detransitioners' demographics, well-being, and medical needs have been censured. Proposal to research 'trans regret' rejected by university for fear of backlash, claims psychotherapist How the Fight Over Transgender Kids Got a Leading Sex Researcher Fired Gender Dissenter Gets Fired The new taboo: More people regret sex change and want to ‘detransition’, surgeon says Detransitioners are a repressed community, presumably for not fitting the dominant prescription of gender transition to alleviate gender dysphoria. Partisan, identity-based activism has inappropriately taken precedence over evidence-based care and the credo first to do no harm. Detrans folk have experienced gross mistreatment and neglect by the status quo of gender-specializing healthcare professionals. Many detransitioners have been irrevocably harmed and traumatized, both mentally and physically, by the gender-affirmation model. This radical medicalization too-often presents inadequate differential diagnostic procedures, and it unfairly labels noninvasive approaches to gender dysphoria with politicized slurs. It is especially harmful to individuals not yet of neurological maturity, and to those of atypical neurology. Detransitioners deserve better. Desistance from transition shouldn't be shamed. Discussion, research, and support for detransitioners shouldn't be taboo. The needs of detransitioners are urgent and largely unmet. They often include: Social interaction and re-integration; Suicide prevention; Psychological referrals free of gender-affirmation; Primary-care physician referrals free of gender-affirmation; Endocrinologist referrals free of gender-affirmation; Access to same-sex HRT; Access to facial and bodily hair-removal for females; Surgical referrals for chest/breast and genital reconstruction in males and females; Research efforts to develop donated organ transplants; Research efforts to develop laboratory-regenerated organ implants; General questions of what outcomes, timelines, and strategies to expect and achieve in detransition, based on sex, age, duration of transition, and methods of transition; As well as many legal questions, such as guidance and options in document restoration, and options for post-transition justice. We, the undersigned of this petition, recognize detransitioners (those who desist from gender transition) as members of the diverse community of sexual and gender minorities whose healthcare needs the NIH SGMRO is intended to serve. We call upon the NIH SGMRO to acknowledge the existence of the growing detrans community, and to allocate funds in direct support of detransitioners' unique, urgent, and largely unmet medical needs.
Petition to Barbara Newhouse, Executive Directors of every ALS Association chapter, Board of Directors of every ALS Association chapter, Board of Trustees of every ALS Association chapter
Create a National Home Health & Respite Care Grant Program for People Living with ALS
Background: A person diagnosed with Amyotrophic Lateral Sclerosis (ALS) will experience savagely relentless and permanent muscle loss of their voluntary muscles. While the disease may initially start out differently for those affected, the inevitable end result is the same for all who choose to live long enough – complete paralysis. What may begin with simply being physically clumsy or slurring words, quickly evolves into losing the ability to move any part of the body, breathe on one’s own, swallow and talk. Ultimately for all, 24/7 care is required, particularly true if the person elects to have a tracheostomy and/or be placed on mechanical ventilation or assistance. What does one do when faced with these daunting physical challenges and yet chooses to remain living at home? For those who are fortunate enough to qualify for Medicaid or Veteran’s benefits, or have a long-term care policy, they receive home health benefits and are able to typically get by. Others may have enough family and friends to provide some care, although they often quickly become emotionally, physically and financially exhausted, needing respite care relief. For the rest, it’s a devastating struggle of epic proportions. Some are forced into bankruptcy to qualify for Medicaid, while others choose to end their lives prematurely to prevent their families from being obliterated by the enormous financial hardship and burden. They die to save their family’s hard-earned pension, children’s college fund and property. It’s sickening what happens to these families, yet no one talks about it. It’s a monumental failure of our society. These families just don’t have the discretionary funds to pay for caregivers, which can run from $52,000 to $104,000 annually (50 hours per week x $20 per hour = $52,000 annually, assuming overtime doesn’t have to be considered - or - 100 hours per week x $20 per hour = $104,000 annually, assuming overtime doesn’t have to be considered). How many of us could actually pay this much out of our own pockets? Not many. Even upper middle-class citizens would have great difficulty coming up with such an amount, and there are numerous cases of those who can’t. Money should never, absolutely never, play any part in deciding whether to live or die. It’s morally incomprehensible and unequivocally wrong. The ALS Association (ALSA) can and must help. They are the preeminent non-profit ALS organization in the United States, with chapters located throughout to serve the entire ALS community. Their marketing and fundraising potential in the ALS marketplace is unrivaled, and they have publicly committed to patient care being in their core plan as a primary mission, as it rightfully should be. The very lives of the people the ALS Association was formed to serve hang in the balance. Until there is a treatment or cure for all people living with ALS, there is nothing more urgent than home health care. As of the last financial statement published for the ALS Association for fiscal year ending January 31, 2017, their total unrestricted assets were reported at $82,712,789, and total net assets were $104,468,596. Their financial position is strong. Below is a carefully considered, achievable plan to provide home health and respite care grants nationwide to all eligible applicants. While it is merely a drop in the bucket, it is a step in the right direction and will help so many. It is anticipated event participation will grow substantially with the implementation of this direct care program, thereby increasing funds raised. This could potentially offset the funds diverted for home health and respite care grants. National Home Health & Respite Care Program for the ALS Association to implement: Create a national home health and respite care grant program to be implemented in every chapter, permanent in nature, with an effective start date of no later than the end of the 3rd quarter of the ALSA fiscal year ending January 31, 2018. At the commencement of the program, funds from the specified sources will begin to be deposited and accrued. Evaluate grant applications and begin awarding grants, with an effective start date of the 2nd quarter of the ALSA fiscal year ending January 31, 2019. Ensure the program is consistent and fair for all ALS patients by implementing the exact same program in every ALSA chapter nationwide. Establish a separate budgetary account and unique account number in each chapter for deposits and withdrawals, specifically and solely for use for the home health and respite care grants. Funding will include a mandatory contribution from ALS Association National in the amount of $5 million in total per ALSA fiscal year quarter, with the first distribution occurring within one week of the initial launch of the program, which is scheduled to begin during the 3rd quarter of the ALSA fiscal year ending on January 31, 2018. Each subsequent quarterly deposit shall occur within one week of the start of each quarter of the ALSA fiscal year. The ALS Association National will determine what percentage to allocate to each chapter’s program by determining the number of living ALS patients each chapter serves, as compared with the total number of ALS patients served throughout all chapters in the United States. Distributions from ALS Association National shall be in full, not incremental installments. Additionally, a mandatory 7% allocation from all “Walk to Defeat ALS” and “Ride to Defeat ALS” gross proceeds will be allocated to each chapter’s respective home health and respite care program accounts, as well as private donations specifically earmarked for such. Should this 7% mandatory contribution have a detrimental impact on a particular chapter’s operations, ALS Association National will waive the equivalent of this amount in the upward contribution from the chapter to ALS Association National. Individuals or groups may also establish their own fundraising events for the specific purpose of funding this program, with the capacity to allocate the funds raised to any chapter nationwide. Create a donation portal on the alsa.org website under each chapter, as well as on each chapter’s individual websites, which directs donations to each respective account. Market the program through chapter and national press releases, descriptive website information, email, social media and private solicitations. Actively solicit donations from private parties and organizations. The responsibility for this task lies with each chapter’s leadership and fundraising arm, as well as ALS Association National’s leadership. ALS Association National will hire an independent oversight committee to evaluate the program’s performance and adherence to the guidelines and criteria established herein. The committee will also send a survey to grant awardees to determine their level of satisfaction and any areas for improvement. This shall be done at the close of each fiscal year, beginning with the close of the ALSA fiscal year ending January 31, 2019. A public report shall be created by the committee no later than the end of the 1st quarter of each ALSA fiscal year. Reevaluate appropriate grant funding amounts each year based on the intake of funding and the residual balance at the end of each ALSA fiscal year. Each chapter will issue payment directly to a certified home health agency or an individual of the grant awardee’s choosing for either custodial type services or skilled nursing services. No person awarded a grant shall pay anything out of their own pockets for subsequent reimbursement. Should a certified home health provider or individual of the awardee’s choosing be unavailable in the awardee’s service area, the chapter will be responsible for contracting with a licensed home health aide, LVN or RN directly to provide the services the awardee requires. In such cases, the chapter will pay these individuals directly. Once again, no awardee will pay anything out of their own pocket for subsequent reimbursement. All donations to these accounts shall be tax-deductible to the donor. At the end of each fiscal year, each individual chapter will create and publish a public report indicating the total amount of donations received, the quantity of respite care grants issued, the quantity of home health grants issued, the total value of disbursements for each and the residual balance. Home health and respite care grants will be awarded for up to $7,500, depending on demonstrated need by the applicant. Applications received while funds are depleted shall be given priority consideration once funds become available again. Those registered with their chapter will receive notification of the program’s existence from support staff and via email. No funding for ALSA staff or administrative overhead, or any other expenses or fees, can be withdrawn from the contributions to these accounts. The accounts are to be used for the express purpose of receiving donations and paying out grants for this program. ALS Association National Home Health & Respite Care Program criteria: The applicant for whom the application is intended must have an official diagnosis of ALS or PLS, be registered with the chapter for which they are applying and live within the service area of the chapter to which they applied. The applicant need not attend an ALS clinic to be eligible. There are no income criteria to be met. Qualifying applicants may receive only one grant award during each ALSA fiscal year, and the grant award may be used in any increment over a 12-month period from the award date. Additionally, applicants may reapply and be awarded a grant during each ALSA fiscal year, which begins February 1 and ends January 31 each year. Applicant must live at a private residence, not a skilled nursing facility or similar, and have a home health or respite care need. Applicant is also encouraged to attempt to secure additional benefits potentially available to them, including, but not limited to, Medicaid, Veteran’s benefits, Medicare home health services, private insurance, long-term care plans and hospice. This often is difficult and time-consuming in nature, and there are often obstacles. For example, a patient in most states cannot be placed on hospice if they have life-sustaining procedures or equipment, such as a tracheostomy or mechanical ventilation. It is, therefore, an assumption of good faith that the applicant will attempt to secure such benefits to ensure grant funds are awarded to those most in need.
Petition to United States Congress
Demand the right to health care without discrimination
Nurses and the communities we serve demand the right to health care without discrimination. This is a central part of our nurse practice acts, state-by-state, and we call on the U.S. Congress to pass legislation to prevent the Health and Human Services (HHS) from implementing policies designed to give healthcare workers the unprofessional right to discriminate. The newly created "Conscience and Religious Freedom Division" of HHS is inviting health care workers to deny care for certain patients.* For example, a nurse might cite a religious objection to caring for a transgender person or refuse to include the spouse of a gay or lesbian person while planning care. This is wrong because: Healthcare workers’ unions and management all agree that all patients deserve quality care free from discrimination Millions of healthcare workers of every religion and no religion work together every day without incident Religious and professional codes alike forbid discrimination Hate has no place in our healthcare system We demand that Congress direct the Office of Civil Rights of HHS to disband the Conscience and Religious Freedom Division and instead work to eliminate bias in healthcare. As Dr. Martin Luther King Jr. said: “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”
Petition to Environmental Protection Agency
Ban Asbestos in the US Now, Without Loopholes or Exemptions
My daughter was just 10 years-old when my husband, Alan, was diagnosed with a cancer caused by exposure to asbestos, a deadly material which is still being used in the U.S. today. Families like mine have fought for decades to get the Environmental Protection Agency (EPA) to ban the use of asbestos, but instead the administration allows imports and use to continue. Alan’s disease was incurable – but it was also entirely preventable. Asbestos kills an estimated 39,000 people in the US every year, yet the EPA has not banned companies from continuing to use it. They are knowingly poisoning Americans. In 2004, Doug Larkin and I co-founded the Asbestos Disease Awareness Organization to fight for families battling mesothelioma. We vowed that we would fight with all of our strength to prevent other families from going through the pain, devastation, and loss that we experienced. Emily and I were there with Alan when he took his last breaths. I lost my soulmate and my daughter lost her father because our government refused to stand up to greedy corporations. The EPA has now spent decades of time and taxpayer dollars on asbestos research. They know it is deadly, yet hundreds of tons of raw asbestos are allowed every year to be used in our country. It’s long past time that the EPA banned this deadly material once and for all. Enough is enough.
Petition to Blue Cross Blue Shield North Carolina, Blue Cross Blue Shield, Brad Wilson, CEO, BCBS NC, Patrick Getson, Media center
IVIG treatment for Myasthenia Gravis
Everyone deserves access to a treatment that is successful for them, especially when they are told it will be covered by insurance. I have a disease called Myasthenia Gravis. Myasthenia Gravis is an autoimmune disease that attacks all of your voluntary muscles. These muscles are used for breathing, smiling, speaking, swallowing, eating, walking, etc. A few months ago I lost the ability to speak, I could not swallow or eat, I lived off of Ensure. I had a nystagmus in both eyes and when I used my hands they would ball up and become temporarily paralyzed. Some days I couldn’t even do a thumbs up. I am a 22-year-old stay-at-home mother, full-time in school working towards becoming a therapist/clinical psychologist and being able to speak to my future patients and my child is pretty important. The hardest part besides not being able to speak was not being able to smile. My three year old couldn’t understand me and all I could do was cry. I was in need of IVIG infusions. Only two. I am allergic to prednisone because it gave me what is called prednisone psychosis and put me into a Myasthenic Crisis that I was able to come out of thanks to IVIG. After being told that BCBS would cover it at no cost and to go ahead and schedule my infusions, I received a letter today saying that coverage was completely denied. This disease has been so terrifying and hard on me and my family. I can’t afford these treatments, and currently they are my only option as far as keeping me out of the hospital. My neurologist wanted me to have just two double doses rounds of IVIG to get me through my flare up, I just had my transsternal thymectomy 8 weeks ago. The IVIG was to get me along until me Cellcept starts working. After my surgery I went into a flare up and struggled to smile and speak again if I ate throughout the day. If I have somewhere to be or I know I will be interacting with people I will go without food so that I will be able to communicate and not be heavily embarrassed by my lack of facial expressions. I am down to 105 pounds and when I got sick in May I was 119. I called the insurance company and made SURE it would be covered. I had met my out of pocket max due to the two week hospitalization and surgery. All I needed was two doses so that I could speak, see, hold my head up without extreme pain and weakness and smile to my little girl. They assured me it would be covered at no cost to me, and I asked them about twenty times if they were absolutely positive. Please sign this petition to help me gain access to the healthcare I need in order to function. We pay our premiums and just finished paying off all of the medical bills. We took a sigh of relief and then became crushed to find out our insurance company had lied to us. We now have an almost $16,000 bill that is due by the 28th of October. My neurologist had a peer to peer that was deemed successful yet the bill still has NOT been covered. Apparently for people with Myasthenia Gravis, IVIG is mainly covered when you are in a crisis. So many of us are fighting to have this covered. A crisis can be VERY deadly and it is where basically your diaphragm stops breathing for you because it becomes too weak. Things that can cause a crisis are menstrual periods, stress, the heat, catching a cold, and more. A “crisis” could mean death. Why do they wait until we are in a potentially deadly Myasthenic crisis when these treatments help so many to prevent us from being hospitalized which then affects our job, our school work and our family. My three year old daughter didn’t understand why her mommy was suddenly gone for two weeks and came home with a huge “booboo” down her chest. I just had my chest sawed and cracked open to remove my thymus so that I could have a fair chance at remission. Nobody deserves to go through this. I would have never placed this burden on my family and I would have sacrificed my health if I had known that I indeed would not be served the treatment I needed at no cost to me after paying my out of pocket max and having no other option. I don’t want to wait until I could potentially collapse and stop breathing in front of my child before I am allowed the aid that I need. My husband is a paramedic and works nights, lord forbid he isn’t home if it happens. Please help me to reverse this and have access to IVIG and get BCBS to cover this bill. I just wanted to be able to have the basic functions of life and avoid being hospitalized which was the next step for my neurologist if they denied me.
Petition to Kevin Brady, U.S. House of Representatives, Mike Enzi, Bernie Sanders
HELP PEOPLE WITH RARE DISEASES GET THEIR LIFE-SAVING MEDICATIONS
I am one of about 800,000 people in the U.S. who suffer from multiple sclerosis, a disabling progressive disease which affects the central nervous system. Other rare diseases include ALS (Lou Gehrig's Disease), muscular dystrophy, lupus and sarcoidosis. I lost my career to MS, as I have become totally disabled. There is no cure for MS, but the disease can be managed. There are currently 13 or so FDA-recognized disease modifying therapy medications, and even less for relapses. Treatment for these diseases is very costly. My daily disease modifying therapy medication costs over $6,500 per month, and the relapse medication costs $40,000 per treatment. This far exceeds my and my husband's total income, as my husband is totally disabled from a stroke. Obviously, very few people can afford these medications, especially when they are fully disabled. There is help available; the drug companies which make these specialty drugs have financial assistance programs that allow the patient to receive the drugs at low cost or for free. HOWEVER, PEOPLE WHO ARE ON GOVERNMENT-ASSISTEED PRESCRIPTION PLANS SUCH AS MEDICARE PART D OR MEDICAID CANNOT RECEIVE THIS HELP. A provision of the Social Security Act designed to prevent Medicare fraud also makes it a felony for a drug company to directly assist a patient financially if that patient has a government-assisted prescription plan, such as Medicare Part D or Medicaid. YOU CAN HELP! PLEASE LET CONGRESS KNOW THAT IT MUST AMEND THE SOCIAL SECURITY ACT TO PERMIT DRUG COMPANIES TO PROVIDE PATIENTS WITH RARE DISEASES WITH DIRECT FINANCIAL ASSISTANCE SO THAT THEY CAN GET THEIR LIFE-SAVING MEDICATION!!!
Petition to James Ryan, Pamela Sutton-Wallace
Medical Bills Should NOT Prevent Educational Goals at the University of Virginia
Nacy Sexton loves learning. He wants to use his education to become a teacher and instill his love of learning in others. When he was accepted at the University of Virginia (UVA), he couldn’t believe it -- He was on his way to becoming the first in his family to graduate from college, and he felt honored to be enrolled at such a prestigious institution. Nacy’s studies were interrupted when he was diagnosed with Lupus Anticoagulancy, a rare blood disorder. His illness forced him to take time off so he could heal. As a full-time student with only part-time work, he was soon faced with a pile of medical bills from UVA’s medical center that he couldn’t pay. When Nacy tried to re-enroll at UVA, he was devastated by the university’s response. With just two classes remaining before he could earn his degree, he was blocked from re-enrolling -- not because he was delinquent on his tuition or other education-related expenses, but because of those unpaid medical bills. The University of Virginia informed him that he must pay his medical bills before he can return to finish his degree. Nacy should not be punished because of his illness. He should not be prevented from finishing his degree because of the high cost of health care. UVA should do the right thing, and allow him to re-enroll and eventually graduate, as he continues to repay his medical bills. Nacy is not the only student impacted by UVA’s medical bill hold. That is why we call on UVA to immediately remove medical bill holds on students. A place of learning should not use medical bills to block its students from their educational goals. Nacy's full story can be found at his GoFundMe page: https://www.gofundme.com/22tp7yrw Nacy's story was also featured on CBS 19: http://www.newsplex.com/content/news/Charlottesville-man-seeks-help-to-re-enroll-at-the-University-of-Virginia-379700651.html?utm_medium=social&utm_source=facebook_Charlottesville_Newsplex_-_CBS19__ABC16__FOX27 Washington Post Article: https://www.washingtonpost.com/health/uva-has-ruined-us-health-system-sues-thousands-of-patients-seizing-paychecks-and-putting-liens-on-homes/2019/09/09/5eb23306-c807-11e9-be05-f76ac4ec618c_story.html?noredirect=on