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 Donald J. Trump, Donald J. Trump, U.S. House of Representatives, U.S. Senate, President Donald Trump
Legalize Lyme Disease
Lyme disease has reached epidemic proportions. It is the fastest growing infectious bacterial disease in America. Generally contracted through a tick bite, new evidence shows it is also contractable via mosquito, spider, or fly bite , from mother to child in the womb , or potentially through unprotected sex . The CDC admits that it does not know how many people have Lyme disease. Estimates vary between 300,000 and 1.5 Million new cases diagnosed per year . These figures do not include tens of thousands of undiagnosed or misdiagnosed cases. 25% of all Lyme cases are children. When Lyme disease is not treated early it can be debilitating, even fatal. The spiral-shaped bacteria (Borrelia) bore their way through every tissue, organ, or bone, causing damage wherever they go. The bacteria knowingly avoid treatment areas in the body and by changing their shape, mimic non-threatening cells. They create intelligent biofilms to protect themselves from antibiotics and their host's natural immune response. Studies now show that 1 in 5 cases may go on to become chronic due to Borrelia "persisters" . Unfortunately, the CDC-approved test available for early detection fails approximately 50% of the time . And due to abysmal funding for research, effective treatments are experimental and often long-lasting. The CDC's illegal preferential treatment of out-of-date and inaccurate Infectious Disease Society of America (IDSA) Lyme Treatment Guidelines  support a government narrative that chronic Lyme does not exist. Thusly, insurance companies are not required to cover treatment costs and patients are left to pay for long-lasting treatment out of pocket. Lyme Literate Medical Doctors (LLMDs) who practice life-saving medicine for Lyme patients are forced to operate outside of the insurance industry, for risk of being shut down. Such little information and training is available to physicians across the country, patients are left to suffer for years before they even receive a diagnosis . By then, many have been misdiagnosed with any of the 300+ diseases that Lyme mimics . They have lost their jobs and are on disability. Some (including children and teens) are heavily affected by the neuropsychological effects of the disease and succumb to suicide . Others have died simply due to ignorance of doctors . This cannot continue. The CDC and IDSA have failed to control Lyme disease. As sufferers, care-takers, friends, family, and co-workers of those who are suffering, we urgently request from the President and all members of Congress: 1. Legislation Expanding The Definition Of Lyme Disease To Cover Chronic Lyme And Co-infections 2. Legislation Protecting Doctors Who Treat Chronic Lyme And Co-infections From Insurance Industry-driven Investigation And Shut-down 3. Heavily Increased Funding For Research Into Chronic Lyme Disease And Co-infections 4. Greatly Improved Testing With High Accuracy Rates (As Seen With Ebola And Other Infectious Diseases) 5. Education Of Doctors And The Public Regarding Symptoms And All Treatment Options -- This petition was originally featured on the We The People petition site. Thank you for signing and sharing with friends, coworkers, spiritual leaders, family members, loved ones, and strangers. It is time to Legalize Lyme disease, including chronic stage and co-infections! -- Sign to add your voice to establish proper legislation and funding of this global epidemic. Important resources: ILADS.org lymedisease.org lymestats.org lymediseasechallenge.org -- Sources:  New England Journal of Medicine: http://www.nejm.org/doi/full/10.1056/NEJM199006143222415Journal of Molecular Medicine: http://link.springer.com/article/10.1007/BF01711648Journal of Clinical Microbiology: http://jcm.asm.org/content/26/8/1482.full.pdfPubMed: http://www.ncbi.nlm.nih.gov/pubmed/4075471Folia Parasitologica: http://folia.paru.cas.cz/pdfs/fol/1998/01/11.pdf  Annals of Internal Medicine: http://annals.org/article.aspx?articleid=699780 PubMed: http://www.ncbi.nlm.nih.gov/pubmed/7648832  Journal of Investigative Medicine: http://www.lymedisease.org/lyme-sexual-transmission-2/Conclusions Raphael B. Stricker, MD On Sexual transmission of Lyme disease: https://twitter.com/NorVect/status/604992062421921792  Dr. Richard Horowitz discusses new case estimates with Congressional Candidate Zephyr Teachout: https://youtu.be/rTIeyKuo8JY  Scientific American: http://www.scientificamerican.com/article/lyme-disease-may-linger-for-1-in-5-because-of-persisters/  Journal of Infectious Diseases, Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program: http://www.lymedisease.org/lymepolicywonk-two-tiered-lab-testing-for-lyme-disease-no-better-than-a-coin-toss-time-for-change-2/  Advocates Call on CDC to Remove Expired Lyme Guidelines from all Publications https://www.webwire.com/ViewPressRel.asp?aId=202124  Study of over 6,000 Lyme patients: http://www.lymedisease.org/wp-content/uploads/2015/04/lymedisease.org-patient-survey-20151.pdf  Can Lyme Disease Be Chronic? Dr. Richard Horowitz: http://www.foxnews.com/health/2015/05/06/lyme-disease-debate-can-condition-be-chronic/  Psychology Today: https://www.psychologytoday.com/blog/emerging-diseases/200903/infection-can-change-your-personality-theres-plenty-proof?collection=126213  "Doctors Pushed ALS Diagnosis, Ignored Lyme", Valley Breeze: http://www.valleybreeze.com/2014-12-17/cumberland-lincoln-area/geraghtys-doctors-pushed-als-diagnosis-ignored-lyme#.Vub33JMrJE5  Tulane University study finds Lyme bacteria can survive antibiotic treatment months after infection https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-survive-after-antibiotic-treatment-months-after-infection
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 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 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
Petition to Blue Shield of California Board of Directors
Act like a real nonprofit or give the public back its $10 billion
Nonprofit healthcare organizations that receive big tax benefits are supposed to serve the best interests of the public. That’s not what’s happening at Blue Shield of California. Up until March of this year, I was Director of Public Policy. But with Blue Shield disregarding its nonprofit duties and senior management refusing to change course, I resigned my position. I now need your help to send a message to Blue Shield that it’s time to either get serious about doing public good or give back to the public the $10 billion in nonprofit funds that they hold. Blue Shield is not supposed to be like other health insurance companies. Officially, Blue Shield is a nonprofit social welfare organization. And because it promised to serve the public interest, it was granted a tax exemption. But Blue Shield executives run it like a for-profit company: billions in profits, multi-million dollar pay for executives, the same high rates as for-profit insurers--all the while depriving the public of the social welfare benefits taxpayers have paid it to provide. That’s wrong! One solution would be for Blue Shield to relinquish to the public its nonprofit funds so that they could be used to improve community access to healthcare. And there’s precedent for this. In the 1990s, two California nonprofit health insurers that turned away from serving a public interest mission were forced to transfer billions of dollars to public benefit foundations. The other solution would be for Blue Shield to act like a real nonprofit. Since Blue Shield is sitting on about $10 billion in nonprofit assets, it should be providing about $500 million a year in community benefits--an annual return of 5%, which is standard for nonprofit public benefit foundations. So join with me, and demand that Blue Shield do its duty as a nonprofit or give back to the public the $10 billion in community benefit assets that it holds.
Petition to Aetna Coventry Medicare, Aetna
Approve transfer of James Gillespie to a hospital that can help him recover.
I need help! (NO DONATION- only signatures & prayers please!) My father went into the hospital for a gallstone, 78 days ago. UPMC Hamot dropped him and broke his back after surgery. He is now paralyzed with a tracheotomy/feeding tube/colostemy bag/catheter. He has a bed sore the size of a volleyball on his back that is going to need surgical intervention. They just informed us that after 6 weeks of doing all of the above, that they recommended to heal him, there is nothing they can do, because of his acuity! AFTER THEIR EGREGIOUS CARE DID THIS TO HIM!!! We can transfer him to UPMC in Pitt but they aren't going to do anything either. Just let him lay there We need him out of there immediately!! It is my belief that 98% of their staff is amazing, but 2 % are killers.I am going to release a story a day of their negligence, and trust me I have them! We have never left Dad alone, someone always stays to advocate, but what good does it do when they give you attitude and drop him right in front of you, after you begged 4 120lbs aides to not lift your post op- 400lb 6'5' father!! It's called GRAVITY. (Especially, if you do not use the proper procedure by inflating the bed or the Hover mat!).We want to take my father to another hospital- either Select Specialty Hospital or Cleveland Clinic but my parent's insurance #AetnaCoventryMedicare (#AetnaCoventryHealthcare) will not approve the move saying he is fine at UPMC or can go to a 1 star Nursing home. WHY won't they approve it when the facility's we want to go to accept their insurance?When we can go somewhere that a top Neurosurgeon can see him and see if we in fact CAN do something? Dad hasn't even had an MRI of his spine because he can't fit in the non open air MRI machine at his current hospital!! Even if there was no surgery Select Specialty Hospital (Erie, PA) at least can give him some rehab so we can see if he can gain any use of his legs and maybe prepare him for his new life. Why? Because one of the ppl who works @AETNA CoventryMedicare told us on the sly, "The insurance doesn't "want to pay another "entry fee" to an acute facility!" Please sign this petition that hopefully can get the insurance moving.I need your help saving my father's life! Thank you. (Again, sign & share, say a prayer- but do not DONATE- the donation does not go to us, but to the website)
Petition to American Osteopathic Association Board Of Trustees
Keep Osteopathic Medicine Osteopathic
The defining characteristic of what makes Osteopathic Medicine different than non-Osteopathic Medicine is the osteopathic content that is taught and tested at different levels of a Doctor of Osteopathic Medicine's training. The American Osteopathic Association (AOA) is the largest association of Osteopathic professionals in the U.S. and also oversees the Osteopathic Certifying Boards of Specialists. The AOA leadership is in the process of creating Osteopathic Specialty Board exams that are devoid of osteopathic content. The individual Osteopathic specialty boards, the AOA house of delegates, the AOA-affiliated societies, and the AOA members at large have not request a board exam option that has absolutely no osteopathic content on it. We feel that: 1. in order for someone to become osteopathically board certified in an osteopathic medical specialty there needs to be osteopathic content on that osteopathic certifying exam. 2. The AOA offering an Osteopathic certification specialty board exam option that is devoid of osteopathic content does not promote osteopathic medicine. 3. Osteopathic certification specialty boards should be in keeping with the objectives of the AOA and only strive to maintain and improve upon a high standard of Osteopathic medical education. 4. If the AOA certifying specialty boards offer a board certification option that is devoid of osteopathic content, it is tantamount to the AOA declaring that osteopathic content is not an essential part of Osteopathic Medicine. 5. With growing dissatisfaction of the American people with mainstream medicine and an Opioid crisis of epic proportions, now, more than ever, it is in the best interest of the public health for the AOA to dedicate itself to only promoting Osteopathic medicine and all those that are interested in practicing osteopathically. 6. There is a "DO Difference" and it ought to be promoted and celebrated and expanded upon. Keep Osteopathic Content in all Osteopathic Specialty Certification Board Exams!!