Petition to Donald J. Trump, Jonelle Gonzalez, Nancy Pelosi
End the profiteering and price manipulation of the pharmaceutical industry
As a country we are being manipulated by these profit hungry companies. Paying more in the US for the same products you can by in Canada etc. for a fraction of the price. Change must occur fast, in 2016 the amount of americans uninsured was at a whopping 27.3 million, this number is growing there are people rationing their insulin and elderly peoples not receiving the medication and help they need. Please sign this to take a step in the right direction to save the lives on millions of americans. Help end this injustice. Because by signing this you are showing enough is enough.
Petition to Collaborative Medicinal Development, ALSA
Allow people with ALS access to the drug "CuATSM" under FDA Compassionate Use
IMMEDIATE MEDICAL BREAKTHROUGH ALERT: "ALS" (aka Amytrophic Lateral Sclerosis, aka "Lou Gherig's Disease") is a terminal, progressive, and utterly devastating disease that eventually causes death in 100% of diagnosed cases, occurring on average between 3 to 5 years after diagnosis. About 6 in every 100,000 people contract the disease across the world. ALS causes the motor neurons in the human body to fail completely, thus leaving sufferers 100% paralyzed, unable to care for themselves, and immobile until death. For the first time in history, a compound exists that has shown "remarkable" progress in halting progression of this evil, insidious disease. In 2014, a currently available drug that has already been proven to be safe in humans, and which is already FDA approved and used as a "contrast dye" in PET scans called "CuATSM" was theorized for use as a treatment in ALS by amateur biologist Dr. Joseph Beckman from the Linus Pauling Institue (LPI). The reason that CuATSM works so well to treat ALS is because it has the unique ability to pass the "blood brain barrier" in several minutes, which heretofore had been the major obstacle in treating ALS and other neurological disorders. "CuATSM" delivers a missing copper molecule directly to misfolded proteins right where the help is needed- in the spinal canal and the brain. More recently, and after further investigations over the last 3 years, a company in Australia just completed a traditional, devastatingly slow "double blind placebo" Phase one "safety study" on CuATSM as a treatment for ALS in humans, and to determine appropriate dosing levels. Needless to say, these results were labeled as a "remarkable breakthrough" by everybody involved with the compound. In fact, the compound CuATSM worked so well in this first study that it was able to demonstrate a remarkable 70% reduction in the speed of progression of ALS symptoms. Needless to say, this potential result is BEYOND incredible, and represents the first time in history that any drug or treatment for ALS has shown such promise. Therefore: We the people afflicted with ALS hereby request immediate access to the currently available drug "CuATSM", within the guidelines of current FDA "compassionate use" laws. We the people who are suffering from ALS will not stand idly by and die quietly for two more years while irreplaceable time is wasted by more unethical, cruel, "placebo"based trials that employ human beings like test animals – when a drug exists right now that could literally change the world! There is simply no time to waste. We must force people with access to the drug to do the right thing. People currently afflicted with ALS are already "terminal" in nature, have nothing to lose, are in VAST agreement in this effort, and the fact that a currently FDA approved drug that IS ALREADY AVAILABLE IN THE USA means that people in dire need of help could slow down the progression of their disease- TODAY. PLEASE JOIN ME IN THIS CRUCIAL FIGHT. For the very first time in history, a drug exists that has shown a REMARKABLE ability to slow ALS. It also holds great promise for Parkinson's, Alzheimers, and other "incurable" neurological conditions. WE DEMAND THE RIGHT TO TRY THIS DRUG IMMEDIATELY, WITHOUT DELAY.
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 Donald J. Trump, Donald J. Trump, U.S. Senate, U.S. House of Representatives, Donald Trump
Require Insurance Companies to Pay for Alternative Pain Treatments
Health insurance companies routinely pay for pharmaceutical and surgical treatment for pain patients, the most expensive and risky forms of care. Many who've tried these treatments are still in considerable pain. At the same time, people in pain are being denied insurance coverage for safer, more effective treatments including physical therapy, massage, chiropractic, biofeedback, acupuncture, marijuana, low level laser therapy, psychotherapy, nutritional and herbal interventions. We need a law that requires health insurance companies to cover all proven effective treatments for pain to the same degree that they cover pharmaceuticals and that requires physicians to be educated about these therapies. Please support a Pain Treatment Parity Act that requires health insurers to provide coverage for all proven effective pain treatments that is equivalent to coverage of pharmaceuticals with respect to treatment frequency, length of treatment, pre-authorization requirements, co-pays, deductibles, medical necessity reviews and any other requirements that determine access to and affordability of care. In addition, given that non-physician health care providers have not had increases in fees for more than 35 years, the Pain Treatment Parity Act should require that alternative pain treatment provider fees are increased on a par with past physician fee increases to insure continuing availability of these critical services. Note: More information on the need for this legislation and the evidence for the safety and effectiveness of nonpharmacological pain treatments can be found in The Truth About Chronic Pain Treatments: The Best and Worst Strategies for Becoming Pain Free. Find out more at www.cindyperlin.com.
Petition to U.S. House of Representatives, Bryan Steil, Nancy Pelosi
Support legislation to keep dialysis patients insured. Tell Congress to pass H. R. 3976.
Low-income Americans with high-cost chronic conditions, like kidney disease, often require charitable assistance to pay for their health insurance premiums. But some insurance companies are refusing to accept payments from non-profit organizations. This puts low-income and financially struggling patients at risk of losing their insurance. Patient advocates for the American Kidney Fund started a petition to help address this crisis. We are fighting to ensure that all kidney dialysis patients can maintain access to their life-saving treatment. The Access To Marketplace Insurance Act would do just that, and we are calling on Congress to pass it into law. The Access to Marketplace Insurance Act, was introduced in the House of Representatives last October. The bill would require insurance companies to accept payments from nonprofit organizations like the American Kidney Fund that serve people who are living with serious health conditions and need charitable assistance to stay insured. Now Congress must take the next step and pass this legislation to ensure that ALL low-income Americans living with chronic conditions can keep their insurance and get the care they need. Please sign and share this petition calling on Congress to vote on this vital legislation right away.
Petition to John Bollard, Nancy Holt, Emily Hawkins, Adam Shahar, Rozeta Avetisyan, Aaliyah Sade, Monique Vaillancourt, Behnaz Behmanesh, Manuel Dizon, Renee Vasquez, Amanda Webb
Save ASHE UCSHIP Medical Referrals for Off-Campus Medical Care!
The UCLA ASHE Center has abruptly changed their referral process when referring students to off campus medical services. This has effectively cut off services for hundreds of students who receive off-campus care. 40,000+ UCLA Students are forced to buy a PPO health insurance plan but are then denied the benefit of choosing to see a doctor of their choice?The UC-SHIP plan has said that they can limit any referrals that they want and will continue to do so. Students pay an exorbitant amount of money for a mandatory PPO plan, but are not able to reap the benefits of paying for a PPO. Having a PPO plan allows the patient the right to choose their providers and where they receive their care. One concern that is rapidly coming into reality is the UCLA ASHE Center can limit all referrals for any provider that a student regularly sees, including podiatrists, allergists, acupuncturists (but why for example can you get a referral still for physical therapy??). This means that the UCLA ASHE Center is controlling who the student can see and where they receive their care, without regard for preserving the right-to-choose or continuity of care. Please help support students in preserving these essential rights that come with paying for a PPO plan and having control over their healthcare. Here are quotes from a few UCLA Students: #1. "I am reaching out to advocate on the tremendous health benefits I have received from acupuncture from outside referrals. I am diagnosed with scoliosis which has impacted many of my activities of daily living and over the years affected my posture with weakened muscles. As a nursing student, my back has been put under stress from lifting, shifting, and assisting patients in the clinical setting. We advocate in patient teaching for complementary therapies such as acupuncture and my improvements from visiting Robert Youngs Acupuncture is a testament to what it has to offer. After coming weekly for the past several months, I have seen a great improvement in reduced pain and improved muscle tone that keeps me going as a student and future healthcare provider. Additionally, I am a low income student from an immigrant family and have fully funded myself through college as to not cause a burden to my parents. Reducing the disparities in access to healthcare is important to me both for myself and for the patients I provide care for. Without the low cost acupuncture I get from Robert Youngs Acupuncture, I will not be able to afford continuing treatment that has been so personally beneficial. The co-pay at the Ashe center is too costly for my weekly visits which I would need to prioritize for meals and housing. While the Ashe center does provide services, the lack of availability is a major barrier. I also like to uphold HIPAA and keep my personal privacy. Being on campus, many of my friends, co-workers, and colleagues can see me walk into Ashe or in the waiting room which has often made me uncomfortable to seek services at Ashe. I have been more comfortable in an outside setting off-campus. Overall, I found that the quality of acupuncture at outside offices like Robert Youngs Acupuncture has been greater with all of the acupuncturists being extremely knowledgeable about the body. Specifically, they have been able to perform physical assessments and pinpoint the specific muscles where I have weaknesses. They provide a variety of services including acupuncture, acupressure, electric simulation, herbals, and cupping that I cannot access at the Ashe center. I urge you that outside referrals for acupuncture are a necessity in order to continue receiving the appropriate resources necessary that the Ashe center cannot always provide." -Current UCLA Student #2. "I just graduated Winter Quarter 2018 and throughout the past year I was consistently receiving acupuncture off campus. I was sad to get the message from Ashe that referrals will largely be discontinued. Acupuncture off campus has been a very important part of my day-to-day, and definitely a much needed stress-reliever. It helped me in times of serious injury, like after I was hit by a car, minor injury, like toe swelling, colds & flu's, back-pain, etc. Just as importantly, it helped me be in tune with my body and identify when even minor things were off. My acupuncturist would always check in on my sleep quality, digestion, stress levels, etc. There was a strong focus on integrated health and well-being that I feel every student should have but Ashe Center certainly cannot provide. Appointments were easily booked from one week to the next, in person or through email, without having to go through the hassle of Ashe's online portal and the lack of availability. Also, it was more affordable as the services were completely covered by UCSHIP, unlike the services offered on campus. Last but definitely not least, the space and the quality of services made the experience rewarding to the maximum. The space felt more like a spa and nothing like a clinic, which complimented that overall feeling of calmness. The acupuncturists themselves were very skilled and very friendly and appointments never felt rushed, which is always a problem with Ashe. I hope you will consider my opinion and do whatever is in your control to allow the possibility for students to receive this much needed care in the future." -UCLA Alumni #3. "I am a graduate student at UCLA. I've been receiving acupuncture at an off campus provider, Robert Youngs Acupuncture, for over a year now and have benefited tremendously from their acupuncture services. A few months ago, my car was totaled on the freeway because a driver hit me from behind. after receiving physical therapy from ashe and making minor improvements, I sought out an acupuncture appt with Robert Youngs Acupuncture to receive treatment for my pain, but lamentably, I could not get an appointment because there appears to be a change in the UCLA Ashe student referral policy. So not only was I not allowed to get an appointment at Robert Youngs Acupuncture, but the UCLA Ashe acupuncture was full and did not have any availability for the next few weeks. in addition to lack of appointment availability, i find that i receive sub-par treatment at ucla's acupuncture facilities. the length of appointment, quality of care, and number of needles used at UCLA acupuncture facilities is unmatched with Robert Youngs Acupuncture. as a commuter student with a tight schedule and bodily pain, not having access to my acupuncturist who is nearby is quite an inconvenience. I am deeply disappointed that I can no longer receive medical treatment for my pain at Robert Youngs Acupuncture, and I really hope that this referral policy is reconsidered." -Current UCLA Student
Petition to Doug Jones, Lisa Murkowski, Dan Sullivan, Kyrsten Sinema, Martha McSally, John Boozman, Tom Cotton, Dianne Feinstein, Kamala D. Harris, Michael F. Bennet, Cory Gardner, Richard Blumenthal, Christopher J. "Chris" Murphy, Thomas R. Carper, Christopher A. Coons, Marco Rubio, Rick Scott, Johnny Isakson, David Perdue, Mazie K. Hirono, Brian Schatz, Mike Crapo, James E. Risch, Tammy Duckworth, Todd Young, Chuck Grassley, Joni Ernst, Pat Roberts, Jerry Moran, Mitch McConnell, Rand Paul, Bill Cassidy, John Kennedy, Susan M. Collins, Angus S. King Jr., Benjamin L. Cardin, Chris Van Hollen, Elizabeth Warren, Ed Markey, Debbie Stabenow, Gary C. Peters, Amy Klobuchar, Tina Smith, Roger F. Wicker, Cindy Hyde-Smith, Roy Blunt, Jon Tester, Steve Daines, Deb Fischer, Ben Sasse, Catherine Cortez Masto, Jacky Rosen, Jeanne Shaheen, Maggie Hassan, Robert Menendez, Cory A. Booker, Tom Udall, Martin Heinrich, Charles E. Schumer, Kirsten E. Gillibrand, Richard Burr, Thom Tillis, John Hoeven, Kevin Cramer, Rob Portman, James M. Inhofe, James Lankford, Ron Wyden, Jeff Merkley, Jack Reed, Sheldon Whitehouse, Lindsey Graham, Tim Scott, John Thune, Mike Rounds, Lamar Alexander, Marsha Blackburn, Ted Cruz, Mike Lee, Bernard Sanders, Mark R. Warner, Tim Kaine, Patty Murray, Maria Cantwell, Joe Manchin III, Shelley Moore Capito, Ron Johnson, Tammy Baldwin, Michael B. Enzi, John Barrasso
Pay Independent and Hospital Pharmacists Fairly & Provide Access Through Coverage
Per a recent consumer reports study, most patients prefer independent pharmacy (Gill,2018). Unfortunately, many are not allowed to use independent pharmacist for coverage of their life-saving medications as they have been removed from the insurance networks by their competition. It appears, no one is listening to the voices of voters and patients. For example, recently medications that were filled by a hospital pharmacy were suddenly forced away from the hospital pharmacy to the insurance company's pharmacy benefit manager's owned mail-order pharmacy. It wasn't because our pharmacy was unqualified; they fill medications for children's transplant, cancer, and many other specialty medications every single day. Although, the reply received from the insurance company for the reason for denial said the pharmacy was not appropriate to fill these medications. Many would argue they were the most qualified and appropriate. The issue is the pharmacy benefit managers (PBM) who control access and reimbursements. There is about an 80 percent chance your PBM is Express Scripts Optum RX or CVS Caremark. Sadly, these same pharmacy benefit managers force many to their own mail-order and retail pharmacies. For my family, our only in-network pharmacy is CVS and CVS mail-order pharmacy. The PBM, of course, is CVS Caremark. Life-saving medications, like my son's transplant medications, are mandated to only be received through the mail for coverage. This issue is not unique. It's happening across America. Recently, a news article stated that CVS paid their own pharmacy much more. "For example, CVS would have to pay Walmart and Sam’s Club almost half again as much — 46 percent more — for generic drugs if CVS were to equal the rates it was paying its own pharmacies" (2019, Candisky & Schladen)" When looking at the reimbursements of our independent pharmacies, unfair and unequal reimbursements are found. "For a Fentanyl Patch 100, CVS pharmacies were reimbursed $400.65 while mom-and-pop pharmacies were reimbursed $75.74. For Amoxicillin, CVS pharmacies were reimbursed $35.92 while mom-and-pop pharmacies were reimbursed $12.21 (Lopez,2018)" Upon speaking to many pharmacists, these reimbursements are barely enough or not enough to cover their overhead cost along with the cost of the medications. After these unfair reimbursements Business Insider notes, "They also didn't know that, as their local pharmacists were getting squeezed, CVS was waiting in the wings, sending out letters offering to buy the very mom-and-pop shops it was forcing out of business (Lopez,2018)." In Ohio alone, over 160 independent pharmacies have closed. Many were bought out by CVS and many did not reopen. These closures are leaving entire communities at loss of a critical healthcare provider to help them demonstrate how to use complex medications, to inform patients that it may be cheaper to pay cash instead of using their insurance card, to prevent patients from taking the many risks of mail-order pharmacy such as delays, lost, thefts, loss of potency of medications due to lack of temperature monitoring, the risk of children and pets ingesting medications, and no one to communicate face to face with our elderly and people with chronic conditions and the list of over 100 other issues with mail-order pharmacy. The over-performance and hard work of our independent, hospital, and community pharmacist should be greatly rewarded not overlooked and disregarded. For example, CVS often states that they are paying per performance. For example, CVS states they pay the pharmacy based on factors such as patient adherence and use of generics. They often measure adherence by medications refilled by the customer. However, for some customers who are discarding medications by the table full due to auto refills and the price gouging of taxpayers dollars when generics are filled, many patients argue that the performance reward should go to our independent, community, and hospital pharmacy who do not make us take all the risks with mail-order pharmacy. Often, when a medication is refilled and the mail-order pharmacy has delayed the medication for days and weeks or one of many incidents that can go wrong with mail -order happens during shipment, the independent pharmacies will fill an emergency prescription. What will happen as the independent pharmacist close their businesses? Where will we go? The insurance company's pharmacy benefit managers are hoping that we are all sleeping at the wheel. That we are not caring about the future of our pharmaceutical care. Let's unite and the PBMs and our regulators otherwise! YOUR SUPPORT WILL SAVE LIVES Thank you! References, Candisky, Cathy, and Schladen, Marty, and . “CVS Paid Itself Far More than Some Major Competitors, Report Says.” Gatehouse Media, Gatehouse Media, 2019, gatehousenews.com/sideeffects/cvs-paid-far-major-competitors-report-says/. Gill, Lisa L. “Consumers Still Prefer Independent Pharmacies, CR's Ratings Show.” Product Reviews and Ratings - Consumer Reports, 7 Dec. 2018, www.consumerreports.org/pharmacies/consumers-still-prefer-independent-pharmacies-consumer-reports-ratings-show/ Lopez, Linette. “What CVS Is Doing to Mom-and-Pop Pharmacies in the US Will Make Your Blood Boil.” Business Insider, Business Insider, 30 Mar. 2018, www.businessinsider.com/cvs-squeezing-us-mom-and-pop-pharmacies-out-of-business-2018-3
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!