Petition to Aetna
Aetna is Denying ALS patients coverage for RADICAVA
My sister-in-law Mary McCreary, who has ALS, is being denied coverage for a drug called Radicava by Aetna insurance. I am copying her plea to get help as an explanation of why this medication is so important for her and how it can help her in battling this horrible disease. I would like to reach out to all of my Facebook friends for their help in urging Aetna to reconsider their coverage criteria for Radicava, recently approved by the FDA for the treatment of ALS. Aetna's extremely narrow and limited coverage criteria excludes such a large population of ALS patients that my provider's office, a major regional ALS clinic, is simply overwhelmed by the large number of appeals they need to file on their patients' behalf. My appeal is one of those. ALS is a progressive disease and time is of the essence. The delay in treatment caused by Aetna's restrictive coverage criteria is simply unconscionable. I am 57 years old and was diagnosed with ALS in September 2014. Although the diagnosis was devastating, I have been relatively successful in dealing with the progressing symptoms of this disease for over 4 years now. I still prepare dinner for my family, do the laundry, manage some light housekeeping, meet friends for lunch, travel locally, pursue my scrapbooking hobby, and generally enjoy a fulfilling life surrounded by family and friends. Yet according to Aetna's narrow coverage criteria, they have deemed me too "ill" to benefit by a drug that is clinically proven to slow disease progression by 30%. If I would be able to enjoy the aforementioned activities 30% longer than I would have with no treatment, I say yes, please! It may not seem like much, but it is HUGE for an ALS patient trying to hang in there until more treatment options are found. Medicare and other major carriers are providing coverage for Radicava, some with no pre-certification requirements at all, yet AETNA has denied coverage to myself and scores of others as a "medical necessity denial". I was denied coverage because I scored lower than a 2 on ONE of the 12 components on the ALS Functional Rating Scale. That component referred to my ability to climb stairs. Because I need to use the hand rails to climb stairs, I scored a 1 in that category. I was scheduled for knee replacement surgery prior to my diagnosis of ALS due to osteoarthritis in my left knee and the untreated osteoarthritis is a major contributing factor in my difficulty with climbing stairs. If I'm able to successfully appeal that reason for the denial of coverage, Aetna is likely to deny coverage because I fail to meet another criteria listed in their Clinical Policy Bulletin - disease duration of 2 years or less. I was diagnosed in September 2014, but I'm considered a slow progressor. ALS progression is very different for every patient and disease duration should most certainly not be a factor in coverage determination. It is clear that Aetna's extremely restrictive coverage criteria was designed to protect their bottom line due to the regrettably high cost of the drug. But if Radicava can slow disease progression and allow patients like myself to enjoy their current quality of life months, or even years longer, how can Aetna, in good conscience, continue to deny coverage to so many? Please join me in urging Aetna to take another look at their coverage criteria and make the necessary revisions so that more ALS patients have an opportunity to not only survive longer, but to do so while maintaining their current quality of life.
Petition to Pope Francis
Excommunicate Paul Ryan for his "mercy"
Paul Ryan, a christian catholic, claims the republican's new health care bill is "an act of mercy". Works of mercy include (Catechism of the Catholic Church par. 2447): To feed the hungry To clothe the naked To shelter the homeless To visit the sick These are the estimated effects of Ryan's bill: According to the Congressional Budget Office 24 Million Americans will lose coverage during the next decade Higher premiums and less coverage for the poor and elderly A 64 year old could pay a $8400 Premium Increase Redistribution of money from the poor to the rich Smaller subsidies for people who don’t qualify for Medicaid A 30% penalty to anyone who loses insurance coverage for more than two months. So better don’t lose your job Tax Cuts for insurers, pharma companies and high earners. $600 billion total States won't be required to cover mental health with Medicaid funds Repealing the expansion of Medicaid by 2020 "There is no mercy in a system that makes healthcare a luxury. There is no mercy in a country that turns their back on those most in need of protection—the elderly, the poor, the sick and the suffering. There is no mercy in a cold shoulder to the mentally ill. There’s no mercy in a policy that takes for granted the sweat, the tears and the sacrifice of working Americans that they shed every day so that they might care for their families’ basic needs—food, shelter, health and hope for tomorrow. There’s no mercy to the 2.6 million people who will lose their job if Obamacare is repealed. This is not an act of mercy. It’s an act of malice." Congressman Joe Kennedy III
Petition to Paul Ryan
Restore CHIP! Children’s Healthcare Insurance Program
Nine million children across the U.S. are at risk of losing access to health care due to Congress’s failure to reauthorize the Children’s Health Insurance Program (CHIP). The program has attracted broad bipartisan support and is credited with providing almost universal healthcare for children in the U.S. Since 1997, CHIP has provided health care access for working families with children who earn too much to qualify for Medicaid. Congress let funding authorization for CHIP expire on September 30 — now millions of children could lose their healthcare if they don’t act. Tell Congress the time to reauthorize CHIP is now. Because of their failure to act, all fifty states will be out of CHIP money by July 2018. American families deserve better than this completely avoidable outcome. Children across the country are depending on people like you to stand up and speak out on their behalf. Tell Congress to take action to reauthorize and restore needed funding for CHIP. Please add your name to tell our representatives to act and save health care access for nine million kids and their hard-working families.
Petition to Department of Veteran Affairs, US Congress, US Senate
Expand comprehensive caregiver benefits to severely disabled veterans of all generations
DAV (Disabled American Veterans), The American Legion, Veterans of Foreign Wars (VFW) and Paralyzed Veterans of America (PVA) together are calling on Congress to expand the Department of Veteran Affairs’ (VA) comprehensive caregiver assistance benefits to disabled veterans of all eras.Veterans like myself. Like many husbands, each day begins and ends with my wife, Yvonne. As a former Coast Guard helicopter rescue swimmer and quadruple amputee, I am able to get out of bed every morning and rest comfortably at night because of her. Yvonne is my caregiver—one of America’s unsung heroes who takes care of the millions of disabled veterans living in America. She is why I am urging Congress to extend the Department of Veteran Affairs’ (VA) comprehensive caregiver assistance benefits to all disabled veterans of all eras. Under the current VA program, some family caregivers for injured veterans are already recognized and supported for their work. But not Yvonne, or thousands of others like her. Today, only caregivers of veterans who were injured on or after September 11, 2001 are eligible - leaving tens of thousands of families caring for veterans without sufficient support or resources. Yvonne—like so many other loving caregivers—made a lifetime of personal sacrifices to help manage my care yet she’s not eligible for all of these benefits. It is virtually impossible for me to take Yvonne for granted, but I feel like the system does. She has been, for all intents and purposes, my most important prosthetic. Her steadfast and tireless support has given me the independence I’ve needed to thrive in life. My family is one of the many veteran families left out because of an arbitrary date in the law. In 1997, I contracted an infection that stopped the blood flow inside my body and put me in a coma for a month. That left it to Yvonne to make the difficult decision to let doctors amputate all four of my limbs and remove several internal organs in order to give me a chance at survival. But over the last two decades, with Yvonne’s love and support, we have been able to build a meaningful life together. I was able to learn and succeed in a new career in the IT sector. I even learned to ski and golf, competed in cycling races and rose through the ranks to become the National Commander of the 1.3 million member Disabled American Veterans. The things Yvonne does for me—helping me dress, bathe, eat, get out of bed and put on my prosthetics—are all made easier by the fact that she is right there by my side when I wake up in the morning. When a caregiver is able to stay home and provide that kind of round-the-clock care, it helps create a better quality of life and better health outcomes for disabled veterans. It’s also been shown that supporting family caregivers is less costly to the federal government than treating veterans through institution-based options. For example, I am eligible for nursing home care which could cost nearly $400,000 per year, whereas average cost per veteran through VA’s Program of Comprehensive Assistance for Family Caregivers is under $40,000 annually. In addition to preventing unwanted and more costly nursing home admissions, caregivers reduce overall health care costs by minimizing medical complications and lowering the number of hospital admissions for veteran patients. And perhaps most importantly, it allows so many injured and ill veterans remain in their homes with family. Caregivers truly are America’s Unsung Heroes. Please encourage your Member of Congress to honor and support these unsung heroes by extending ALL comprehensive caregiver benefits to ALL severely disabled veterans, not just those injured after 9/11.
Petition to mike keidler, washington state health care authority, Jay Inslee, Guy Palumbo, Randi Becker, Andy Billig, Mike Padden, Mark Mullet, Michael Baumgartner, Shelly Short, Sharon Brown, Mark Schoesler, Barbara Bailey, Bob Hasegawa, Brad Hawkins, judy warnick, Curtis King, Jim Honeyford, Maureen Walsh, Lynda Wilson, Ann Rivers, Dean Takko, John Braun, Marko Liias, Sam Hunt, Christine Rolfes, Kevin Van De Wege, Hans Zeiger, Jan Angel, Jeannie Darneille, Steve O'Ban, Steve Conway, Mark Miloscia, Phil Fortunato, Maralyn Chase, Karen Keiser, Sharon Nelson, Tim Sheldon, Reuven Carlyle, Rebecca Saldana, John McCoy, Kirk Pearson, Kevin Ranker, Lisa Wellman, Doug Ericksen, Jamie Pedersen, Steve Hobbs, manka dhingra, David Frockt, Joe Fain, Patty Kuderer, Annette Cleveland, Suzan DelBene
Mandated coverage for Fertility Treatment in Washington - Help us build families
1 in every 8 couples will deal with some type of infertility at some point in their life. I am 1 in 8. I am the young age of 26 years old and I cannot conceive a child through natural means. I require medical intervention due to multiple different conditions. Including PCOS, endometriosis, and a few others. Ultimately, it comes down to the fact that I do not produce viable eggs without medication, and I have a high risk for miscarriage. I cannot explain to you the impact this disease has made on my life, between the heart wrenching depression, anxiety, financial stress and so much more I have difficulty feeling like my life reaches it's potential. A lot of women feel defined by their ability to have children and raise them to be successful, constructive parts of society. This is our impact on the world in so many ways, this is the only way we leave a piece of ourselves here after we have passed away. My husband and I have done everything we are currently able, the only procedure we have yet to attempt is invitro fertilization, primarily due to the out of pocket costs being roughly $12,000-$20,000 for just one cycle of Invitro (IVF) This 1 in 8 equates to roughly 12.5% of American’s. According to Resolve.org, Washington State has 147,772 women of reproductive age in state that experience difficulty getting pregnant or carrying a pregnancy to live birth. This doesn’t even record the statistical evidence on the amount of men in Washington that experience this was well. There are 7.288 million people in Washington State. Assuming 12.5% of those citizens will experience infertility at some point in their lives, we are looking at approximately 911,000 people that will be impacted by infertility . How many states require fertility coverage? 15 Arkansas, California, Connecticut, Hawaii, Illinois, Louisiana, Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode Island, Texas, and West Virginia. What are the average costs that an infertile couple spend on infertility? According to creatingafamily.org “On average, women with successful outcomes spent $48,424 total on fertility treatment” I have spent roughly 30,000 over the last 6 years. We have only had 2 pregnancies, both of which ended in an early miscarriage. Our next and only step left to take is IVF (aka Invitro Fertilization). For a lot of us, this amount can equate to a year’s wages. So let’s talk premiums and how offering infertility insurance coverage can and will impact those that are fertile on a day to day basis. According to Resolve.org: Those with infertility are 2.5 times LESS LIKELY to miss time from work due to infertility. I personally can relate to this, if I had to option to jump to IVF (like my doctor recommended) I would have stopped doing other medical treatments that have been less expensive that have ultimately just been a waste of time and money for both me and my employer. I have been doing IUI’s (inter uterine insemination), with hormone injections of Follicle Stimulating Hormones, HCG, and clomid with very close monitoring. This causes about 6 doctor visits per month. Which means roughly 12 hours of work missed per month. As apposed to going straight to IVF which has about the same amount of doctors’ visits, but I would likely not need to repeat the cycle 6-12 times to get pregnant. 86% of couples who go through IVF get pregnant within 3 cycles. Often people believe that adding an infertility coverage benefit will increase health care costs. However, studies indicate that including comprehensive infertility coverage in a health benefit package may actually reduce costs and improve outcomes. For example, a survey of employers, conducted by the consulting firm William M. Mercer found that 91 percent of respondents offering infertility treatment have not experienced an increase in their medical costs as a result of providing this coverage. Often patients select treatment based on what is covered in their health benefit plan rather than what is most appropriate treatment. For example, a woman having trouble conceiving because of blocked fallopian tubes or tubal scarring may opt for tubal surgery, a covered treatment, which can cost $8,000 -$13,000 per surgery. Many patients are forced to forgo in vitro fertilization (IVF) because it is not a covered service even though it costs about the same as tubal surgery and statistically is more likely to result in a successful pregnancy. According to William M Mercer, “The decline in use of high-cost procedures like tubal surgery would likely offset the cost to include IVF as a benefit and provide improved health outcomes.” (William M. Mercer, Infertility as a Covered Benefit, 1997). In states with mandated infertility insurance, the rate of multiple births is lower than in states without coverage. (New England Journal of Medicine, “Insurance Coverage and Outcomes of In Vitro Fertilization,” August 2002). Couples with insurance coverage are free to make more appropriate decisions with their physicians based on medical necessity rather than financial considerations which often result in multiple births and a high rate of complications during and post-pregnancy. Comprehensive infertility coverage may actually reduce premium expense by as much as $1 per member/per month. According to The Hidden Costs of Infertility Treatment in Employee Health Benefits Plans (Blackwell, Richard E. and the William Mercer Actuarial Team, 2000), insurance premiums now indirectly provide coverage for “hidden” infertility benefits such as surgeries to remove scarring in the fallopian tubes for women or varicose vein removal for men, were calculated to be adequate to cover more effective and often less expensive treatments such as ovulation induction, intrauterine insemination and in vitro fertilization. So I come to you today, asking you to support our right to start a family. I ask you to take away the years of pain and suffering my husband and I have experienced, and to help ensure that no other person will have to say no to the proper treatment for their infertility due to the high costs of procedures.
Petition to Bundesamt für Gesundheit
Ein Leben ohne Sonne! Vivre sans soleil! Vivere senza sole! Living without sun!
Pour le FRANCAIS voir plus en bas, per l’ITALIANO vedere più in fondo, for ENGLISH see further below DEUTSCH EIN LEBEN OHNE SONNE! So müssen Patienten leben, die an Erythropoietischer Protoporphyrie leiden. Helft ihnen, die Behandlung zu bekommen, die es ihnen erlaubt aus dem Schatten zu treten. Hallo, hast du jemals daran gedacht, ein Leben ohne die Sonne zu führen? Nur der Gedanke daran scheint unmöglich, oder? Aber jetzt werde ich dir ein Geheimnis enthüllen…es ist nicht ein Alptraum, aus dem wir wieder wach werden können, sondern unser wahres Leben seit der Kindheit. Wir sind eine Gruppe von Patienten mit Erythropoietischer Protoporphyrie (EPP), einer sehr seltenen Krankheit. Sie erlaubt es uns nicht normal zu leben, weil unser Blut krank ist und in der Sonne brennt, die Haut wird von innen zerfressen. All dies geschieht in weniger als 5 Minuten Exposition gegenüber Sonnenlicht, und auch künstliche Lichtquellen sind schädlich. Ich weiss was du jetzt denkst…Urlaub, wie geht das? Das ist nicht das Problem. Es geht um das, was man täglich an einem sonnigen Tag macht: die Fenster am Morgen zu öffnen, um Licht hereinzulassen, in der Sonne zu Fuss zum Frühstück zu gehen, mit dem Auto oder Bus zur Arbeit zu fahren oder die Kinder zur Schule zu bringen, in hellen, lichtdurchfluteten Umgebungen arbeiten zu können, deine Arbeit oder berufliche Ausbildung in einer solchen Umgebung überhaupt auszuüben, und noch viel mehr. Kurz gesagt, im Gegensatz zu dir haben wir uns jeden Tag vor der Sonne zu fürchten und zu flüchten. Eine der angenehmsten Sachen der Welt, wie ein schöner sonniger Tag, wird für uns zu einem täglichen Alptraum, der uns seit Kindheit geprägt und uns vieles verwehrt hat, weil die Folgen von Lichtexposition unerträgliche Schmerzen und in extremen Fällen tatsächliche Verbrennungen sind. Es ist als ob jemand Feuer unter unsere Haut gesetzt hätte – Wir brennen von innen und die Angst vor diesen Schmerzen hat unser Leben gebrandmarkt. Es gibt ein Medikament, mit dem viele von uns behandelt werden konnten, das so genannte Afamelanotid. Es ermöglicht uns, in die Sonne zu gehen, die Kinder zur Schule zu bringen und mit ihnen im Park zu spielen, zur Arbeit zu gehen, diese auszuüben oder sie überhaupt erst zu lernen, an einem Sonntagnachmittag mit der Familie spazieren zu gehen und nicht alleine im Haus eingesperrt zu bleiben. Kurz gesagt, das Medikament hat uns ein normales Leben, eine Wiedergeburt gegeben. In der Schweiz waren wir die ersten, die es in 2006 getestet haben, und wir haben den Weg für seine Erprobung in vielen anderen Ländern geebnet. Die Zulassung fand in der Europäischen Union im Jahr 2014 statt. Bereits im Jahr 2012 konnten wir es durch Artikel 71a/b des KVV bekommen, die Kosten für die Behandlung wurden von den Krankenversicherungen übernommen. Seitdem konnten viele EPP-kranke Schweizer von der wundersamen Wirkung von Afamelanotid profitieren. Leider war diese Lösung nur vorübergehend ... seit ein paar Wochen haben viele von uns die schreckliche Nachricht erhalten, dass unsere Krankenkassen nicht mehr bereit sind, die Kosten für das Medikament zu tragen. Grund ist eine Preiserhöhung, die nach unserem Kenntnisstand notwendig war, um die hohen Anforderungen der Europäischen Behörden zu erfüllen und die formale Vermarktung des Medikaments zu ermöglichen. Wir wurden plötzlich wieder in die Angst vor dem Licht und seinen schmerzhaften Folgen zurückgeworfen. Zurück in die Hölle… Wir sind verzweifelt: die jungen Patienten unter uns befürchten, dass sie ihre Ausbildung werden unterbrechen müssen, es gibt Eltern, die sich nicht mehr um ihre Kinder werden normal kümmern können, Berufstätige, die jetzt ihre Funktionen nicht mehr wie früher werden wahrnehmen können, und einige von uns, die den Stellenverlust befürchten müssen, und noch andere die so hoffnungslos sind, dass wir uns grosse Sorgen machen, dass sie sich in den Alkohol stürzen oder sich gar das Leben nehmen werden. Die Lage ist dramatisch… Wir öffnen diese Petition, um eine klare Botschaft über die äusserst prekäre und verzweifelte Situation, in der wir uns befinden, an das Bundesamt für Gesundheit (BAG) zu senden: Wie kann es denn sein, dass uns der Zugang zu einem solch wesentlichen Medikament von einem Tag zum anderen verwehrt wird? Das ist eine Verletzung unserer Menschenrechte auf eine Behandlung! Es gibt keine Alternative zum Afamelanotid und die Einstellung der Vergütung stellt uns vor eine ethisch verwerfliche Entscheidung zwischen einer Behandlung und keiner Behandlung. Wir wurden bereits vom Schicksal schwer gezeichnet, an einer sehr seltenen und ungerechten Krankheit zu leiden, und jetzt sind wir auch durch ein Gesetz bestraft, das eine Entscheidung ermöglicht, die ausschliesslich auf wirtschaftlichen Aspekten beruht und auf völlig willkürliche Art und Weise bestimmt, dass wir dieser revolutionären Behandlung nicht mehr würdig sind. Wir flehen deshalb das BAG an, in unsere Situation konkret einzugreifen, und etwas tun, um uns Afamelanotid zurückzugeben. Wir beanspruchen das Recht, die gleichen sozialen, wirtschaftlichen und lebensverwirklichenden Chancen wie unsere anderen "normalen" Mitbürger zu haben, die nicht an einer seltenen und belastenden Krankheit wie EPP leiden. Wir bitten um Hilfe! FRANCAIS VIVRE SANS SOLEIL! Ainsi vivent les malades de Protoporphyrie Érythropoïétique. Aidez-les à accéder aux soins qui leurs permettent de sortir de l'ombre. Salut, as-tu déjà pensé à vivre sans le soleil ? La simple pensée semble impossible, n’est-ce pas? Mais je vais te révéler un petit secret…il ne s’agit pas d’un cauchemar duquel nous pouvons nous réveiller, mais de notre condition depuis notre enfance. Nous sommes un groupe de patients souffrant de Protoporphyrie Érythropoïétique (EPP), une maladie très rare qui nous interdit de vivre normalement car notre sang est malade, il brûle au soleil et il ronge notre peau de l'intérieur. Tout cela se passe après une exposition de moins de 5 minutes à la lumière du soleil, mais les sources de lumière artificielle sont également dangereuses pour nous. Tu as certainement immédiatement pensé aux vacances mais le problème pour nous n’est pas uniquement ça. Toutes les tâches simples du quotidien lors d’une journée ensoleillée sont un défi pour nous: ouvrir les volets de la maison pour laisser entrer la lumière, marcher au soleil pour aller déjeuner, prendre le bus pour aller au travail, conduire un véhicule, accompagner les enfants à l'école, se garer loin de l'endroit où vous souhaitez vous rendre, simplement travailler ou suivre votre formation dans des lieux inondés de lumière, et bien plus encore. En bref, contrairement à toi, nous devons fuir le soleil tous les jours. La chose la plus agréable au monde, telle qu’une belle journée ensoleillée devient pour nous un cauchemar quotidien qui nous a marqué depuis notre enfance. Nous devons renoncer à beaucoup de choses car les conséquences d’une exposition à la lumière peuvent mener à une douleur atroce et, dans d’extrêmes cas, à des véritables brûlures. Tu brûles réellement de l'intérieur comme si tu étais prisonnier d’un incendie et la peur de cette douleur affecte nos vies. Un médicament que beaucoup d'entre nous ont pu essayer, appelé Afamelanotide, nous permet de nous exposer au soleil, aller chercher les enfants à l'école et de jouer avec eux au parc, travailler et suivre une formation, de sortir le dimanche après-midi en famille et enfin ne plus rester enfermé seul à la maison. En bref, le médicament nous a donné une vie normale, il nous a fait renaître. En Suisse, nous avons été les premiers à le tester en 2006 et nous avons ouvert la voie à son expérimentation dans de nombreux autres pays et à son approbation dans l'Union Européenne en 2014. En 2012, nous avons pu l’obtenir grâce à l'article 71a/b de la OAMal et les assurances maladie ont pu couvrir les coûts. Depuis lors, de nombreux malades Suisses ont pu bénéficier des effets miraculeux de l'Afamelanotide. Malheureusement, cette solution ne fut que temporaire...depuis quelques semaines beaucoup d'entre nous ont reçu la terrible nouvelle que nos caisses maladies ne sont plus disposées à rembourser le coût du médicament en raison d'une augmentation du prix, à notre connaissance nécessaire pour répondre aux exigences rigoureuses des autorités européennes et pour permettre la commercialisation officielle du médicament. Nous nous retrouvons à nouveau plongés dans la peur de la lumière et de ses conséquences douloureuses. Retour à l’enfer… Nous sommes désespérés: les jeunes patients parmi nous craignent de devoir interrompre leur formation professionnelle, il y a des parents qui ne seront plus capables de s’occuper de leurs enfants normalement, des employés ou des indépendants qui ne pourront plus exercer leurs fonctions professionnelles comme avant, et certains parmi nous qui ont peur de perdre leur emplois, et d'autres encore qui sont si désespérés que nous craignons sérieusement qu'ils puissent se plonger dans l'alcool ou même se suicider. La situation est dramatique... Nous ouvrons donc cette pétition pour donner un message clair à l'Office Fédéral de la Santé Publique (OFSP), quant à la situation extrêmement précaire et désespérée dans laquelle nous nous trouvons. Comment se fait-il que l’accès à un remède si essentiel puisse être retiré du jour au lendemain? Ceci est une violation des droits de l'homme et de notre droit à un traitement! Il n'existe aucune alternative à l’Afamelanotide et avec cet arrêt du remboursement du médicament nous sommes confrontés à un retour forcé à notre vie de malade, à une décision éthiquement répréhensible entre un traitement et pas de traitement. Nous avons déjà été sévèrement marqués par le fait d'avoir une maladie très rare et injuste, et maintenant nous sommes également pénalisés par une loi qui permet une décision arbitraire, fondée uniquement sur des aspects économiques. Celle-ci a déterminé que nous ne sommes plus dignes de ce traitement révolutionnaire. Nous implorons l'OFSP d'intervenir concrètement dans notre situation et d’agir pour nous redonner l’accès à l’Afamelanotide. Nous revendiquons le droit d'avoir les mêmes opportunités sociales et économiques, de pouvoir vivre comme le font nos autres concitoyens "normaux" qui ne souffrent pas d'une maladie rare et handicapante comme la EPP. S'il vous plaît aidez-nous! ITALIANO VIVERE SENZA SOLE! Così vivono i malati di Protoporfiria Eritropoietica. Aiutateli ad avere la cura che gli permette di uscire dall’ombra. Ciao, hai mai pensato di vivere senza sole? Impossibile solo il pensiero, vero? Ma ora ti svelerò un segreto a te che stai leggendo... ciò esiste e non è un incubo dal quale ci si può risvegliare, ma la nostra condizione dall'infanzia. Siamo un gruppo di pazienti affetti da Protoporfiria Eritropoietica (EPP), una patologia molto rara che non ci permette di vivere normalmente perché il nostro sangue è ammalato e brucia al sole, corrodendo la pelle dall'interno. Tutto ciò accade in meno di 5 minuti d'esposizione al sole ma anche a fonti di luce artificiale, e se anche hai pensato subito alle vacanze, il problema non è questo per noi. Essenzialmente è tutto ciò che tu fai in una giornata di sole. Aprire le ante di casa per far entrare luce, camminare al sole per andare a fare colazione, guidare la macchina o prendere il bus per andare al lavoro o portare i bambini a scuola, parcheggiare dove vuoi anche lontano dal luogo dove ti devi recare, lavorare in luoghi inondati di luce, svolgere il tuo lavoro o la tua formazione professionale in tali ambienti, e molto di più ancora. Insomma, noi a differenza tua dobbiamo scappare dal sole ogni giorno e la cosa più piacevole al mondo come una bella giornata di sole per noi diventa un incubo quotidiano che ci ha segnato dall'infanzia e ci ha fatto rinunciare a moltissime cose perché le conseguenze dell’esposizione alla luce sono dei dolori strazianti e in casi estremi ustioni vere e proprie, come se qualcuno avesse appiccato il fuoco sotto la tua pelle – Tu bruci dall’interno e la paura di questi dolori ci ha condizionato la vita. Esiste un farmaco che molti di noi hanno potuto provare, si chiama Afamelanotide e ci permette di camminare al sole, andare a prendere i bambini a scuola e giocare con loro al parco, andare al lavoro, svolgerlo e impararlo, uscire la domenica pomeriggio in famiglia e non stare chiusi in casa da soli, insomma il farmaco ci ha donato una vita normale, ci ha fatto rinascere. In Svizzera siamo stati i primi a sperimentarlo nel 2006 e abbiamo aperto la via alla sua sperimentazione in molti altri paesi e alla sua approvazione nell’Unione Europea nel 2014. Già nel 2012 siamo riusciti a ottenerlo grazie all’Articolo 71a/b della OAMal e alla copertura dei costi da parte delle assicurazioni malattia. Da allora molti malati Svizzeri hanno così potuto beneficiare degli effetti miracolosi dell’Afamelanotide. Purtroppo questa soluzione si è rivelata solo temporanea…da alcune settimane molti di noi hanno ricevuto la terribile notizia che le nostre casse malati non sono più disposte ad assumersi i costi del farmaco a causa di un aumento di prezzo, da ciò che abbiamo potuto capire necessario per soddisfare le severe richieste delle autorità Europee e permettere la commercializzazione formale del farmaco. Noi ora ci troviamo ripiombati nel terrore della luce e delle sue dolorose conseguenze. Ritorno all’inferno… Siamo disperati: giovani malati che temono di dover interrompere la loro formazione professionale, genitori che non saranno più in grado di prendersi cura dei loro figli in modo appropriato, dipendenti o liberi professionisti che non potranno più svolgere i loro compiti lavorativi come prima, e alcuni di noi che hanno paura di perdere il posto di lavoro, e altri ancora che sono così angosciati che abbiamo seriamente paura che possano affogare la loro disperazione nell’alcool o addirittura togliersi la vita. La situazione è drammatica... Apriamo questa petizione per far arrivare un messaggio chiaro all'Ufficio federale della sanità pubblica (UFSP) sulla situazione estremamente precaria e disperata in cui ci troviamo: come può essere che una cura così essenziale ci possa essere tolta da un giorno all’altro? Ciò è una violazione dei nostri diritti umani a una cura! Non c’è alternativa all’Afamelanotide e l’interruzione del rimborso del farmaco ci pone di fronte a una decisione eticamente deprecabile tra una cura e nessuna cura. Già siamo stati duramente segnati dal destino di avere una malattia molto rara e ingiusta, ed ora ci troviamo anche penalizzati da una legislazione che permette una decisione basata unicamente su aspetti economici che in maniera completamente arbitraria dichiara che non siamo più degni di questa cura rivoluzionaria. Imploriamo l’UFSP di intervenire concretamente nella nostra situazione e fare qualcosa per ridarci l’Afamelanotide. Rivendichiamo il diritto di avere le stesse opportunità sociali, economiche e di realizzazione di vita come i nostri altri concittadini “normali” che non soffrono di una malattia rara e debilitante come l’EPP. Per favore, aiutateci! ENGLISH LIVING WITHOUT SUN! This is how Erythropoietic Protoporphyria sufferers have to live. Help them have the treatment that allows them to emerge from the shadows. Hello, have you ever thought of living without the sun? You can’t even imagine that, can you? But now I will reveal a secret to you who are reading this...this is not a nightmare from which we can awaken, but our condition since childhood. We are a group of patients with Erythropoietic Protoporphyria (EPP), a rare disease that does not allow us to live normally because our blood is poisoned and burns in the sun, eating away at the skin from within. All of this happens in less than 5-minute exposure to sunlight, but also artificial light sources are dangerous, and even if you are now thinking “holidays, how does that work?” this is not the key problem for us. Essentially, everyday life is a constant battle against the sun: Opening the window drapery of the house to let the sunlight in, walking in the sun to go to breakfast, driving or taking the bus to go to work or take the kids to school, parking your car wherever you want even if it is far from the place where you intend to go, working in places flooded by light, carrying out your work or your professional training and education in such environments, and much more. In short, unlike you we have to protect ourselves from the sun every day. One of the most pleasant things in the world such as a beautiful sunny day for us is a painful nightmare that has marked us since childhood and made us give up many things because the consequences of light exposure are excruciating pain and, in extreme cases, actual burns, as if someone had set fire under your skin – You are burning from the inside out and the fear of this pain has dramatically affected our lives. There is a drug that many of us have been able to try, called Afamelanotide, and it allows us to walk in the sun, get the kids to school and play with them in the park, go to work, carry it out and learn a job, go out on a Sunday afternoon with the family and not stay locked in the house alone. In short, the drug has given us a normal life, it gave us a rebirth. In Switzerland, we were the first to test it in 2006 and we have paved the way for additional clinical trials in many other countries and its approval in the European Union in 2014. Already in 2012 we were able to get it through Article 71a/b of the Federal ordinance on health insurances, and treatment costs were covered by health insurances. Since then many Swiss EPP-sufferers have been able to benefit from the miraculous effects of Afamelanotide. Unfortunately, this solution was only temporary...a few weeks ago many of us received the horrible news that our health insurance companies are no longer willing to reimburse the costs of the treatment due to a price increase necessary, to our knowledge, to meet the stringent demands of the European authorities and allow the formal marketing of the drug. We now find ourselves plunged back in fear of the light and its painful consequences. Back in hell… We are desperate: young patients fearing to have to interrupt their professional training and education, parents who will no longer be able to care for their children appropriately, employees and professionals who will not be able to perform their work duties as before, and some of us who are afraid of losing their jobs, and others who are so hopeless that we seriously fear that they might drown their desperation in alcohol or even commit suicide. The situation is dramatic ... We are opening this petition to convey a clear message to the Federal Office of Public Health (FOPH) on the extremely precarious and desperate situation in which we find ourselves: how can it be that the ONLY treatment which is so essential for us EPP sufferers can be withheld from us from one day to the next? This is a violation of our human rights to a treatment! There is no alternative to Afamelanotide and with the discontinuation of the reimbursement we are now faced with the ethically reprehensible decision between a treatment and no treatment. We have already been severely marked by destiny with a very rare disease, and now we are also penalized by a law that allows a decision based solely on economic considerations, which in completely arbitrary fashion determines that we are no longer worthy of this revolutionary treatment. We implore the FOPH to take concrete steps in our situation and do something to give Afamelanotide back to us. We reclaim the right to have the same social and economic opportunities as well as the right to realize our life plans just like our other "normal" fellow citizens who do not suffer from a rare and debilitating disease such as the EPP. Please help!
Petition to Department of Veterans Affairs, President of the United States, Department of Defense
Give Corey the benefits and care he has earned!
My son was assaulted by a soldier breaking his neck. He was hit from behind because he didn’t want to get into the car with them. The Army says this is my son’s fault because if he had gotten in the car when he was told to, he wouldn’t have been hit breaking his neck. After breaking his neck the soldiers picked Corey up and placed him in the back of a compact car between two other soldiers. They had a Sgt and a paramedic meet them in the parking lot of the barracks where the paramedic evaluated my son and did not call an ambulance for him to stabilize him. It took about 3 hours for them to get Corey to the military hospital where they did not have a neurosurgeon. The Army refuses to transfer him to a WTU they refuse to start a medboard and they refuse to say this is in the line of duty. SOLDIERS did this to my son. SOLDIERS moved my son around and hauled him around in a car for hours with a broken neck. A Paramedic trained by the army looked at my son, documented that he was barely breathing, paralyzed, had low blood pressure and heart rate, and was in and out of consciousness. This paramedic had a responsibility to call an ambulance to stabilize my son’s spinal cord and administer oxygen, fluids, and medication for his heart rate and blood pressure. A paramedic had the responsibility to transfer my son to a hospital with a neurosurgeon on duty to stabilize my son. Due to the care and treatment he received at the hands of soldiers and a paramedic on post, my son suffered bleeding into the spinal cord as well as having bone fragments impinging on his spinal cord. He went from paraplegic to quadriplegic all while in he hospital. Now my son is not eligible for any grants for adaptive technology, home and vehicle modifications, transport to and from therapy, durable medical equipment, or home health care. He is not eligible because the Army refuses to take responsibility for their part in my son’s injuries. I cannot sue because of something called the Fares Doctrine. My son has suffered enough! For the rest of his life he will have to have someone help him with everyday tasks. He cannot even control his own bowel and bladder function. He is 23 years old. Help me get the benefits my son deserves!! I have 5 kids and have worked hard to get where I am. I am a RN who works at the VA hospital in our area and I am going to lose my job. My FMLA is up this month and I will have to return to work. They won’t even let me work part time so I can care for Corey. Without the benefits being withheld we will lose everything! I can’t leave him by himself and he has to go to therapy. I was told last week to apply for Medicaid. I shouldn’t have to. He is coveeed on my insurance and the army has some responsibility for the extent of his injuries. PLEASE help in any way you can! To read more of our story or to help share or donate to help with modifications we so desperately need for our home please follow this link https://www.youcaring.com/coreyshackelford-1038083 or you can find my story on Facebook @accountabilityforcorey
Petition to Terry McAuliffe, Donald Trump, Mark Warner, Tim Kaine, Barbara Comstock, Mark R. Herr
Prevent Hospitals from Seeking Guardianship As Means 2 Override Patient Rights
Anastasia on Facebook I used to think all the talk about "murder boards" in hospitals was a fallacy. However based on recent family events sadly they are true. Currently there is not a law that prevents hospitals from seeking guardianship as a means to override a patients rights to dispute discharge or treatment decisions. While there are specific instances where taking guardianship of a patient is not only advisable but is absolutely necessary when life is threatened, such as in the case of minors who need a life saving treatment but the parents refuse to allow it due to personal values or religious beliefs; however even those instances should be few and far between. Instances like those that have happened to our family the last few weeks, where a parent, family member who holds a legally executed power of attorney and stands 'in loco parentis' for an incapacitated family member can have their powers summarily and arbitrarily suspended or terminated because they disagree with a hospitals decision not to treat a condition because a doctor perceives the patient has no quality of life because they suffer from a brain injury and feels the person "would not want to live that way" should never happen! Quality of life is something that cannot possibly be known or measured with the limited and superficial contact that occurs in a hospital setting and is something best left to the patient and those closest to them. To have strangers come in and forcibly tear you from your loved ones, to abduct your person, because that is exactly what this is - an abduction - is terrifying for a person with a brain injury and other such patients. It is terrifying for an incapacitated person who has relied heavily on and whose life, happiness and well-being has depended on a family member that it is so inextricably intertwined it is impossible to separate one existence from the other without creating great psychological and emotional harm and trauma. I can say this because I have had to watch my sister whimper and cry out in fear since guardianship of her was awarded to Inova Fairfax Hospital appointed guardians. I have had to watch the expression of fear on her face while being told lawyers would now be her guardians and that I no longer had control over where she lived, who would be caring for her, what medications she could or could not be given, or treatments she would or would receive. I did not and could not tell her these same two lawyers also had the authority to place her in clinical trials, and had the authority to dispose of her remains how they saw fit. When Inova Fairfax Hospital appointed guardians removed her from the hospital without notifying a single family member I had to watch the expression on sadness and bewilderment at seemingly having been abandoned when I walked in six hours later because it took our Virgnia State Delegate making calls to locate her because Inova had ordered their nursing staff to not give me any health information, just as they chosen to ignore my power of attorney before we went to court. I have had to watch her being over medicated and suffering while her guardians were missing in action because they signed papers to have her sent to a substandard nursing facility and then went out of town for several days. I have had to physically clamp off my sisters feeding tube to prevent her from being given three sedating medications directly after giving her morphine because a nurse said she could not give my sister her regular medications when she would normally get them because their “protocol” only allowed them to give her medication at 9:00am, 1:00pm, and 5:00pm. Which means she was receiving a massive dose of 600mg of Neurontin, 2mg of Klonopin, and 10mg of Ambien on top of morphine in an 8 hour period! Now maybe it’s just me, but you do not administer those medications, at those doses to a 5’2” 108lb female unless you are trying to put her into a coma or kill her. Stand with our family if you believe this is egregious and sign our petition to not only stop Inova Fairfax Hospital from killing or intentionally putting our sister in danger and to STEP ASIDE and let Anastasia's family care for her as they always have done; but to have legislation put in place to prevent this from every happening to anyone else's child or loved one every again!! Here is is a link to the meeting with Kelly Armstrong, PhD and the Inova Fairfax Casemanagement team. https://youtu.be/VxMFP-o-p6U