Economic Justice

1,079 petitions

Update posted 1 day ago

Petition to Kathleen Wynne, NDP Leader Andrea Horwath, PC Leader Patrick Brown, Deputy Premier Deborah Matthews, MPP Vic Dhillon, Minister Tracy MacCharles

End Tarion’s new home warranty monopoly NOW: Give Ontario's new home buyers a choice!

Ontario's Premier Kathleen Wynne said the time for monopolies is over (National Post, Apr. 17, 2015). We think she’s absolutely right! Monopolies are notoriously inefficient and ineffective - the prices are too high and the production is too low - and they can "capture" the political and regulatory processes (CBS Money Watch, Sept. 18, 2014). And now Justice Cunningham has recommended ending Tarion's monopoly as a result of his Tarion Review! "...I am recommending the introduction of a competitive multi-provider model for warranty protection.  Introducing competition should encourage continuous improvement and innovation. This in turn can lead to better consumer outcomes such as enhancements in warranty protection beyond minimum amounts..." (Justice Douglas Cunningham, Tarion Review Final Report, Dec. 16, 2016). But the Wynne Government has not yet accepted Justice Cunningham's recommendation to end Tarion's monopoly.   Tarion is a private corporation created as a monopoly by the Government of Ontario to provide warranty protection to new home buyers and to regulate builders. The legislation was established in 1976 – 41 years ago – and many agree that it has never worked properly. Numerous media reports show that there are many serious problems resulting from the legislation and how Tarion is administering the legislation - and now Justice Cunningham has agreed!  The following summarizes the situation in three other provinces – and then in Ontario: Prov       2015 Housing starts    # of Warr Providers       Avg #        Alberta             37,282                         7                         5,326 BC                    31,446                        5                          6,289 Manitoba          5,501                           5**                      1,100 Ontario             70,156                         1                         70,156  This means that Alberta, BC and Manitoba offer a CHOICE of warranty providers AND, on average, the warranty providers in those provinces have a much more reasonable number of homes to service than Tarion.     Sign this petition to ask Premier Wynne to end Tarion’s monopoly and offer a number of warranty providers in Ontario -- like Justice Cunningham recommended -- and like other Canadian provinces are doing.  It's time for Ontario to catch up! ------------------------------------- * Statistics Canada  **effective 2017

Canadians for Properly Built Homes
995 supporters
Update posted 1 day ago

Petition to Patricia J. Gumport

Demand that Stanford Protect Graduate Education

On Thursday, November 2, 2017, the House of Representatives introduced the Tax Cuts and Jobs Act. The Act introduces a number of changes that may affect graduate students, including treating tuition as taxable income, and eliminating or reducing deductions for student loans and other tuition scholarships. It also directly affects Stanford and other universities by taxing university endowments.  These changes threaten to make graduate education unaffordable. By counting tuition waivers as income, the new bill will tax the average Stanford graduate student on over $45,000 dollars of extra “income” per year. As a result, we will be taxed at a higher rate – preliminary estimates suggest that taxes can increase anywhere from 200% to 400%, depending on our specific funding packages. Graduate programs at Stanford remit many students’ tuition costs in exchange for wages as teaching assistants (TA) or research assistants (RA), along with a modest stipend. While this stipend reaches us, the tuition fees do not: they are transferred from the University to our respective Departments. In effect, the University transfers this money from one pocket to another. Under the new tax proposal, graduate students stand to be taxed for “income” that never reaches them. This bill can affect graduates students regardless of citizenship status; as long as a student pays taxes to the US government, they will be impacted. This bill will affect anyone with student loans by eliminating student loan interest deductions (currently at $2,500/yr). Moreover, while the Senate version of the bill would not affect graduate student tuition or student loan deductions, it would tax the University’s endowment. We fully expect these provisions to have long-term adverse effects on the University community as a whole. Patricia J. Gumport, the Vice Provost for Graduate Education, notified students in an email on November 8 that the “tax proposal has the highest priority attention from Stanford’s leaders and we are advocating actively against these provisions.” While we appreciate the University's statement, it does not provide any concrete information about how exactly students may be affected by the proposed changes, what Stanford is doing to protect graduate students, or how the University will respond if the proposed changes are passed. As students, teachers, and researchers, graduate students need more information about how their jobs and livelihoods may be affected, as well as an active voice in discussions that may affect our ability to contribute to the University. We therefore call upon the University to: Provide concrete information on (a) how graduate students on various financial packages may be affected by the proposed changes, with specific estimates and figures; and (b) what actions Stanford is taking to ensure that the tuition tax exemption and student loan interest deduction are preserved. We also want to know what specifically Stanford is doing in partnership with the peer universities and higher education associations that Vice Provost Gumport named in her recent email.  Explain how Stanford will protect graduate students’ take-home pay if the tax deduction is eliminated. Specifically, we want Stanford to guarantee that it will adjust either our tuition or our financial packages to offset any changes in our federal taxes.  Hold a Town Hall meeting for graduate students with President Marc Tessier-Lavigne, Vice Provost Gumport, and all other relevant personnel to discuss the tax plan and its implications for graduate students, as well as the continued financial viability of graduate education at Stanford. We, the undersigned, ask the University to respond to these demands by December 1, 2017. Congress plans to vote on a tax reform bill as early as Thanksgiving. We hope that the University will collaborate with us on this pressing issue and continue to fulfill its responsibilities to the graduate community. [Note: Please include your department, affiliation, and year of graduation (actual or anticipated) when you sign. For example: Jane Nguyen, PhD, English, 2018.] 

Stanford Solidarity Network
3,205 supporters
Update posted 1 day ago

Petition to Kelli Linville, April Barker, Gene Knutson, Daniel Hammill, Whatcom County Council, Bellingham City Council, Michael Lilliquist, Pinky Vargas, Terry Bornemann, Roxanne Murphy

Bellingham Publicly Owned Fiber Optic Network

Publicly Owned Fiber Optic Internet Bellingham is hurting. Like many other cities nationwide we have high unemployment, low wages, and a host of economic, social and environmental problems. This inexpensive solution would help us address all of them, in fact over 450 other cities have already implemented solutions like this, but our leaders are reluctant to even give our citizens access to the resources they've already paid for, much less prepare our city for the future.  As other cities embrace high-speed fiber broadband, Bellingham is getting left far behind. Our city has underutilized public fiber resources and several local Internet Service Providers eager to deploy high speed broadband, like they have in Mount Vernon, yet this is held back by rules and regulations that have not kept pace with technology. Fiber would: Create an opportunity for a public access component to make ultra high speed internet broadly accessible in public spaces, provide higher quality low-income connections to those in need, and guarantee a level of internet access to all. Give Bellingham a strong standing among Washington cities, and create valuable infrastructure that we could continue to build on in the long-term. Create jobs: Fiber would draw companies to the city, provide jobs for construction and maintenance, create new internet service providers and other innovative businesses that are made possible by ultra-fast broadband. Reduce Our Impact on the Environment: Fiber would reduce the need for travel to take place for meetings. It is also very durable and usually requires less maintenance than old infrastructure wiring, like copper wiring.   Increase property values: Wiring for fiber-optics has been shown to increase property value approximately 1% Provide a network our government could leverage to deliver data from current and future ‘smart grid’ sensors including those used for parking management, resource monitoring, air quality, muni and other needs. Over the long term smarter management could save the city money and increase our tax base without increasing taxes by reducing unemployment and creating good jobs. This petition asks for the city to give the public access to the broadband resources we've already paid for, expand our critical publicly owned broadband infrastructure, establish a Dig Once Policy for Bellingham and Whatcom County, allow multiple providers into multi-unit dwellings, and provide high quality internet access to all residents that truly address our Digital Divide issues. 

Jon Humphrey
756 supporters
Update posted 1 day ago

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!  

Swiss Society for Porphyria -
5,205 supporters