Health and Safety
Petition to Jeff Stratton, McDonald's President, Tim Fenton, McDonald's COO, Greg Watson, McDonald's Senior Vice President, Menu Innovation, Cindy Goody, PhD, MBA, RD, LDN, McDonald's Senior Director of Nutrition, Julia Braun, McDonald's Director of Nutrition, Menu Innovation Team, J.C. Gonzalez-Mendez, McDonald's Senior Vice President, Global CSR, Sustainability and Philanthropy, Dan Coudreaut, McDonald's Vice President, Culinary Innovation, Steve Easterbrook, McDonald's CEO
It's Time For A Healthy, Meatless Option (Please!)
My name is Kathy Freston. I'm an author of books like Quantum Wellness: A Practical and Spiritual Guide to Health and Happiness, and some of you may have seen me talking about healthy living and conscious eating with Ellen Degeneres, Oprah Winfrey, Dr. Oz, or others on television or in print. I've been fortunate enough to reach millions of people with a positive message, and with this petition I’m hoping to bring a positive change to America with a mainstream meatless option at McDonald’s! Adding plant-based protein options at McDonald's will appeal to workers out for a quick lunch, families with health-conscious members out to dinner, children on field trips, and anyone looking for something different than the current menu at McDonald’s where even the french fries contain beef flavoring (they don't in Europe, incidentally)! According to a recent survey, more than one-third of Americans already buy meat substitutes for reasons that range from health to ethics! So why not make a meatless option available at one of America’s favorite restaurant chains for everyone to enjoy? Healthy living should be about progress, not perfection, and this is an easy step that McDonald’s could be taking. Sales of meat substitutes in the U.S. bring in over $553 million a year and visionaries like Bill Gates of Microsoft and Evan Williams and Biz Stone of Twitter are helping fund some of the many meatless options in development for mass markets. Meanwhile competitors like Chipotle have new braised tofu Sofritas, Tropical Smoothie added vegan chicken strips, and Burger King has a veggie burger! That's not even getting into the fact that KFC has vegan chicken in Canada (really, try it!), Subway already has a veggie patty, and McDonald's Canada has veggie wraps! We Americans love a protein center to our meal, so veggies and salads alone (or even in a wrap) won’t do the trick; we want something hearty and protein-centric just like the burgers and sandwiches you already have, only with something plant-based instead. In September, McDonald's partnered with President Bill Clinton (who improved his own health by eating plant-based foods) and the Alliance for a Healthier Generation to make some youth marketing improvements, but still left me and many members of the public wondering about people of all ages looking to lower cholesterol, reduce saturated fat intake, and cut calories. Offering an option that is completely without animal products is ideal, not only for those who don’t eat animal products for ethical reasons, but for those who are lactose intolerant or have egg allergies. Like many Americans, I’m over this "all or nothing" way of thinking by powerful decision makers in the government and in the corporate world. We need to work together to find positive ways to work towards common goals like eating healthier, farming sustainably, and treating animals with respect. In that spirit, one very simple step can come from fast food giant McDonald's adding a healthy, plant-based item to the menu in the United States. Truly, there can be something for everyone! Please sign my petition to support adding a healthy, meatless option at McDonald's.
Petition to International and national research funding agencies, Director general WHO, Margaret Chan, Marie-Paul , Assistant Director-General, Health Systems and Innovation WHO, Dr. Marie-Paule Kieny, The Directorate-General for Research and Innovation, DG Research & Innovation, European Union, Mr. Robert-Jan Smits, Secretary General of the United Nations, Mr. Ban Ki-Moon, Vice President - Human Development, WORLD BANK, Mr. Keith Hansen, Head of the Health Division - OECD, Mrs. Francesca Colombo, UN member states
Help us to increase support for rare diseases research and save millions of people #RAREvolution
#RAREvolution: Stand Up for Scientific Research on Rare Diseases DEUTSCH; FRANÇAIS; ITALIANO; ESPAÑOL; CHINESE; PORTUGUÊS ENGLISH A disease is considered rare when it affects few people. Despite the rarity of each rare disease taken individually, together they may affect up to 8% of the population and mainly children. When the immediate family and friends are factored in, rare diseases may impact nearly 25% of the population of any country. Rare diseases affect people all over the world, and are a true global health issue. In developing countries the problems are compounded by poverty, scarcity of medical expertise and other resource limitations. Rare diseases (RDs) are often associated with severe disabilities and premature death; they are chronic, progressive, degenerative and disabling. The thousands (7,000 to 8,000) of different pathologies defined as “rare” have in common specific features that enhance patient vulnerability: difficulty in obtaining timely and accurate diagnosis; lack of experienced health care providers; scarce research activities compared to more common diseases; and expensive treatments. The needs of rare disease populations have to be addressed to ensure universal application of the principles of justice and access to health and contribute to reduce health disparities between populations. Health care and treatment for rare diseases is a human rights issue with a global dimension and impact. Specific policies must be put in place to address the needs of people affected by rare diseases and promote universal health coverage across the world as stated by Article 3 of United Nations Sustainable Development Goals: “Ensure healthy lives and promote well-being for all at all ages”. To accomplish this objective, there is also a need for enhanced efforts in the fields of fundamental, translational, epidemiological and clinical research. Public policy plays a crucial role in advancing rare disease research. The Orphan Drug Act of 1983 in the US and the European Regulation n. 141/2000 demonstrate the impact that policy decisions can have in driving forward innovative research and show the successful outcomes that public policy intervention can achieve. However, much more international attention is needed to push forward research and increase prevention, diagnosis and treatments for rare disease patients. National Plans also provide significant emphasis in individual countries. The Rare Diseases research community with this petition calls upon public authorities to take the appropriate steps to improve research efforts in the field of Rare Diseases. The need for public support is founded on the accomplishment of the universally recognized right to health, a public good that national authorities must pursue, assuming the role of investors in research when private funders do not. The following points are provided as guidance for the establishment of policies on rare diseases research: Increase allocation of resources Promote a multi-disciplinary and coordinated approach Adopt specific incentives policies Leverage existing knowledge and optimize the use of existing drugs Widen health economics criteria in considering the cost-effectiveness of RDs research Adopt appropriate and internationally recognized rare disease classification systems Invest in innovative diagnostic methods of rare diseases to enable early intervention Set criteria for ante-natal and newborn screening and ethical controls Recognize the expanding role of patient groups in contributing to develop and foster knowledge and awareness on rare diseases, and include patients at all levels in the development of policies, research agenda and protocols for specific rare diseases Full text here
Petition to Inter-American Commission on Human Rights, Kathleen Rice, Jean Elizabeth Manes
HELP FREE AMERICAN CITIZEN DETAINED ON FALSE CHARGES IN EL SALVADOR
February 2017— Long Island, NY. On December 19th, 2016 an American community leader and activist, Rafael Flores, was detained in direct relation to his outspoken criticism for political corruption and drug trafficking in El Salvador. His stance on these issues made him a rival to the political leaders connected to organized crime in El Salvador. He was intentionally targeted because of his controversial conversations on his TV show, “Rafael Flores On The Record” aired live through tribunatv.us, where he explicitly named individuals responsible for perpetuating corruption, money laundering and the abuse of government funds from the U.S. without supervision. Rafael Flores was born in El Salvador on April 28, 1971. He moved to the United States in 1984, where he attended the Roosevelt High School in New York before attending Hofstra University. He held various jobs during that time, beginning with working in a family owned Bodega. In 1997, he married the former, Melvi Calderon, a successful hair stylist. He and Melvi then raised Rafael, 26 Jennifer, 24, Stephanie, 21 and Alejandro, 12. While raising his children, Rafael and his brother, Gilberto Flores were partners of Golden Empire Realty Co., located in East Meadow, NY. Rafael has been recognized for his efforts by various elected officials and government agencies, including local Villages, the Town of Hempstead, Nassau County, Senators, U.S. Representatives as well as the Government of El Salvador. In 2010, Rafael founded The American Salvadorian Association of Long Island (ASALI), which is an organization that shares informational resources to Hispanics, aiding them with a variety of issues, including immigration and entrepreneurship empowerment. Rafael’s passions in life are battling corruption, making government more efficient for its residents and serving others. Every occupational decision bears this as its goal. He has proven his dedication to serving others by working with organizations, such as Disaster Relief Command Services, Friends of Good Health, Toys for Tots, local Chambers of Commerce and many more civic groups. Recently, Rafael partnered with Friends of Good Health and was able to get pro-bono medical services provided to the most marginalized areas of El Salvador on several occasions. In one instance, 20 children were able to have their cleft lips repaired. On the same trip wheel chairs, computers and food baskets were donated to those in need. Rafael has been able to direct numerous donations to benefit local communities in the United States as well as in El Salvador. Recently on behalf of FUSA, he channeled a donation of more than 600 bulletproof vests to the National Civil Police with the support of the Department of State and the Nassau County Police Department. The goal being to ensure that the National Police of El Salvador received the vests to protect El Salvador’s national law enforcement from gang violence. In late December 2016, Rafael traveled to El Salvador seeking sponsorship for an event to be held in Nassau County on February 9, 2017. While in El Salvador, Rafael was detained by officers on false allegations of extortion. Rafael is innocent. We are certain that the fabricated, malicious allegations against him are in retaliation for his criticisms of corrupt politicians and members of organized crime in El Salvador. They have plotted against him to shut him up permanently and make an example out of him. Rafael recently began hosting meetings with U.S. Representatives to advocate the suspension of U.S. funding to El Salvador. The funding was falling into the hands of unscrupulous individuals without U.S. Supervision. Rafael’s criticisms are found on the Internet, his Facebook page and on his program, “Rafael Flores On The Record.” Rafael publicly mentioned specific people and their involvement in drug trafficking. He also interviewed ex-DEA agent, Danny Dalton, who is aware of particular individuals participating in organized crime. The Salvadorian criminal justice system has no regard for Rafael’s American citizenship or human rights. The court has not accepted evidence from the defense team nor does it intend to. Until just recently, he was denied access to make phone calls to his family members. His family resides here in the US and is often unaware of his whereabouts, wellbeing and safety. They were also prohibiting Rafael’s family from depositing money for his basic needs, such as clothing or a mattress to sleep on. He is currently sleeping on the floor. At Rafael’s first court date, the court claimed it had no available transportation for him. Thus, the court waived his absolute right to appear in front of a judge. An appeal was requested shortly after and was quickly denied. On February 1st, Rafael was secretly moved from his holding cell into a notorious prison, nicknamed Mariona. His attorneys were not warned of the move until after it had already happened. This sort of behavior from the Salvadorian government is consistent and will continue. We are pleading for our U.S. leaders to intercede and help free our exemplary father, husband, brother, fellow American and a friend to all, Rafael Flores. Please sign this petition to let our government know that we need their help. Please help get Rafael Flores back home.
Petition to Alabama, Robert Bentley, Alabama State House, Alabama State Senate
Alabama Department for Animal Safety
Alabama is a great state for all animals but there is a problem for animals in Alabama. There is no department for the protection of animals that live here. There are animals laws to help them in the case of cruelty and to put away people that do this awful things. But we need a department that's mission is to go find animals that are being mistreated and save them and put this people away. There is no reason for people to treat animals in an awful manner. We need this department to be a police force that takes care of cases that are animal cruelty cases and give people charges under Alabama law. So please help me get the message across and I will lead this department and go into where ever an animal is being mistreated.
Petition to Marin County Community Development Agency
OPPOSING THE ESTABLISHMENT OF A MEDICAL MARIJUANA DISPENSARY IN THE SAN GERONIMO VALLEY
We, the undersigned residents of the San Geronimo Valley, petition the County of Marin Community Development Agency in opposition of the issuance of any permit allowing the establishment of a medical marijuana dispensary in the San Geronimo Valley (encompassing the four towns of Woodacre, San Geronimo, Forest Knolls and Lagunitas). The San Geronimo Valley is a small, semi-rural family oriented community where a medical marijuana dispensary would not be appropriate. We are a community looking to keep our towns quiet, safe and easily accessible for children and people living here without being faced with the crime and issues dispensaries bring. We desire to support local businesses that are in alignment with the growing needs of our children's safety. We don't doubt the benefits of medical marijuana, we just don't believe the location of a dispensary in the San Geronimo Valley supports families and safety. We demand that the County of Marin Community Development Agency deny any permit applications for the establishment of any medical marijuana dispensaries in the San Geronimo Valley.
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 Iowa State House, Iowa State Senate, Iowa Governor
Increase Availability of Child Care for Children with Mild Illnesses
I would like propose a change to child care assistance that would help not only low-income families in Iowa, but would improve the health of all adults and children in schools and day cares across the state. Flu season will soon be here again. The health department tells us we should stay home when sick to help prevent the spread of influenza, but for many parents, they cannot take time off from work to care for their children. They risk not being able to pay their bills if they miss even one day of work, or worse yet losing their jobs entirely. These parents are forced to mask their child's symptoms with medications and send them to school and daycare. This results in the rampant spread of illnesses that could have been prevented. Ideally, these children could have gone to a “Get Well Center” instead of school and daycare, but there are only five get well centers in Iowa. Get well centers are specialized child care centers that provide care for mildly ill children. They require separate rooms for different categories of illness, specially trained staff, higher staffing ratios, a nurse on-site, and physician oversight. These requirements make get well centers very expensive to operate. Parents that could afford to pay for these services typically have jobs that provide paid sick leave, so they don't need the services. The parents that need a get well center the most are the parents that rely on child care assistance. Child care assistance, however, pays the same below-market rate that it pays for standard child care. Because of the high cost of providing get well care and the low reimbursement from child care assistance, there is a severe lack of Get Well Centers in Iowa. I am a nurse and I have a daycare center for children with special needs, called Tipton Adaptive Daycare. I am in an excellent position to open a get well center attached to my child care center, but I can't do this if no one can pay for the services. What I am proposing is that Child Care Assistance reimburse at the "special needs" rate on days that a child needs care in a "get well center". Since a get well center is required to have a nurse assess each child when they arrive, documentation would be available to prove the child met the criteria for exclusion from school and daycare. A sick child should receive a temporary classification as special needs due to the higher level of care required for their illness. Child care assistance already allows parents to list a back-up provider, so children could be pre-approved for back up care at the get well center when they apply for child care assistance. Having access to Get Well Centers would provide better job security for low income families while significantly reducing the spread of illnesses in schools and daycares. I have spoken to many people about this idea, and have received overwhelming support. I believe that the Department of Education, the Department of Public Health, physician and healthcare groups, the teacher unions, and the state and national child care associations, and family social service agencies would all support this proposal. The additional cost would be offset by the improved job security for the parents, which decreases dependency on public aid, and decreased lost work time for the parents of the other children that would avoid exposure to an ill classmate that should not be in school. Please sign my petition to show your support and encourage Iowa legislators to introduce a bill for the 2016 legislative session that would address this need. Thank you.
Petition to California State House, California State Senate, California Governor, Ben Allen, Steven Bradford, Al Muratsuchi
PREVENT Mass Casualties in the South Bay - Please Forward
ALERT: This affects residents in Torrance, Redondo Beach, Gardena, Carson, Lawndale, Hawthorne, Hermosa Beach, Manhattan Beach, Wilmington, L.A., Lomita, Rolling Hills, San Pedro, Palos Verdes Estates, West Rancho Dominguez, and Long Beach, California. Torrance Refining Company (formerly ExxonMobil ) in Torrance and Valero in Wilmington are the only two refineries in CA that use toxic and volatile forms of hydrofluoric acid (HF) which can have deadly cloud-forming behavior. All other CA refineries use a much safer alternative — sulfuric acid. PBF and Valero must stop using HF and switch to a safer alternative. This can be mandated by an AQMD rule or state law. A refinery shutdown is not required. According to an EPA "worst case" scenario previously prepared by ExxonMobil prior to the refinery sale, the release of 50,000 lbs of their "Modified" HF (MHF) could result in a ground-hugging HF cloud drifting with the breeze 3.2 miles into surrounding areas at concentrations high enough to cause serious and irreversible injuries with short term exposure (and possibly fatalities). If released in an explosion, fire, earthquake, or terrorist attack, MHF could cause mass casualties in surrounding communities. Alarmed? It gets worse. * The Torrance refinery doesn't have 50,000 lbs. They have 250,000 lbs of MHF. Furthermore, ExxonMobil's estimated 3.2 mi. toxic distance is too low because they gave too much “credit” to MHF’s supposed ability to reduce HF cloud size. The actual risk zone is 15 miles. Thanks to an analysis by the local citizens group Torrance Refinery Action Alliance (TRAA), the EPA is now investigating ExxonMobil's scenario, and the SCAQMD is considering the adoption of a rule to ban it. * During the February 18, 2015 explosion at the Torrance refinery, a flying 80,000 lb. piece of equipment hit just 3 ft. from a tank containing 50,000 lb. of MHF. Federal safety officials said the surrounding communities "dodged a bullet." * On Sept 6, 2015, a leak of MHF from the Torrance refinery occurred. No sirens sounded, and the Torrance Fire department was notified only later by email. * A key volunteer, Dr. S. Hayati with the grassroots Torrance Refinery Action Alliance (TRAA), recently uncovered the fact that in 1998, Mobil officials, Torrance Fire Department Chief R. Scott Adams, and possibly other city officials secretly approved the reduction of a key safety chemical that was supposed to make deadly HF safer in case of an accidental release. Thanks to the hard work of Dr. Hayati, the Chemical Safety Board has stated its intent to investigate MHF. The South Bay should not accept the status of “sacrifice zone” for the benefit of PBF in Torrance and Valero in Wilmington. How much are more than a half-million Californians worth? As a critical and time-sensitive public safety issue, we call on California lawmakers to immediately introduce legislation to BAN and REPLACE the use of MHF and HF at California refineries! California Governor Jerry BrownPhone: (916) 445-2841Fax: (916) 558-3160email: https://govnews.ca.gov/gov39mail/index.php California State Senator Ben Allen Capitol Office (916) 651-4026District Office (310) 318-6994email http://sd26.senate.ca.gov/contact/message California State Senator Steven Bradford Capitol Office (916) 651-4035District Office (310) 514-8573email http://sd35.senate.ca.gov/contact California State Assembly Al MuratsuchiCapitol office (916) 319-2066District Office (310) 375-0691email: https://lcmspubcontact.lc.ca.gov/PublicLCMS/ContactPopup.php?district=AD66 Join your concerned fellow citizens: https://www.facebook.com/Torrance-Refinery-Action-Alliance-100724630259310/ https://www.facebook.com/southbayflare/