7 petitions

Started 9 months ago

Petition to Patientenbeauftragter der Bundesregierung Karl-Josef Laumann

Light for everyone – make treatment for the rare light intolerance disease EPP available

German version Light for Everyone – Please make the only treatment for the rare light intolerance disease EPP available! The ultra-rare genetic defect EPP forces us to a life in darkness and pain. We EPP sufferers demand access to the only treatment for our condition, which was already approved over two years ago!  A genetic defect, in which light is an enemy: In EPP (erythropoietic protoporphyria), only a few minutes of light exposure are sufficient to trigger a phototoxic reaction which causes severe burns inside the blood vessels, leading to excruciating pain which does not respond to any known painkiller and can persist for days. EPP sufferers therefore avoid all light sources, which leads to massive restrictions for them and their social environment. However, living completely without light is not possible: EPP suffers would only be safe in a dark cellar! We therefore endure not only light deprivation but also frequent episodes of excruciating pain since childhood, leading to social isolation, depression and despair. As if that wasn't bad enough, about 5% of patients develop potentially fatal liver failure as a consequence of the genetic defect. Light at the end of the tunnel: Until recently, no treatment for EPP existed. As EPP symptoms are triggered by the visible light spectrum, sunscreens and other UV-protection measures are useless in this condition. 2014 however, the new active substance «afamelanotide» was approved in the EU for treatment of adult EPP sufferers. EPP patients receiving the treatment during the clinical trials and special access schemes were able to spend hours in direct sunlight and started an almost normal work and social life! Very importantly, the approval for adults will also enable the development of a formulation to treat children, the most vulnerable and severely affected group of EPP patients.  Waiting in the dark: In Germany, patients affected by rare diseases with no alternative treatment are typically granted access to newly developed drugs for their condition right after approval. In EPP however, the access to «afamelanotide» has been delayed and experienced all kinds of obstacles over and over again. As the treatment is available on a regular basis in the Netherlands since June 2016, we know that no fundamental obstacle exists to treat patients. Of additional concern is the fact that the three medical EPP centres in Germany will only be able to treat a small portion of the 400 German sufferers. Germany is one of the reference nations for orphan-drug availability. Therefore, we hope that access in Germany will also have a positive impact regarding accessibility of «afamelanotide» in other European countries, who are facing similar obstacles. The German patient organisation «Selbsthilfe EPP e.V. » therefore requests an investigation by the appointed member of the German parliament for patient relations of the Ministry of Health, Karl-Josef Laumann, to clarify the reasons for the continued delays and with the aim to make the treatment available by next spring – the most challenging time for EPP patients. In order to make our voice count, representatives of «Selbsthilfe EPP e.V.» should be actively involved as equal stakeholder in every step of the investigation. Please support us to bring light in our life! Living in the dark and in pain knowing that a treatment exists is unacceptable. Please support us to live the normal and rich life we deserve. Elke Hauke, Chairwoman Selbsthilfe EPP e.V. Dr. Jasmin Barman-Aksözen, Scientific Advisor Selbsthilfe EPP e.V.   For further inquiries: Homepage of the German EPP association: We cordially thank Daniel Aufdermauer for the generous offer to use his photographs:

Jasmin Barman
55,484 supporters
Started 9 months ago

Petition to Petitionsausschuss Bundestag, MR Wolfgang Finger, Petitionsausschuss Europaparlament, Peter Jahr, Petitionsausschuss Europaparlament, Axel Voss, Petitionsausschuss Europaparlament, Gabriele Preuss

Das Halogenlampen-Verbot MUSS verhindert werden! Abolish phasing-out of halogen-lamps!

DEUTSCH / ENGLISH Halogenglühlampen sind unverzichtbar, denn sie sind die für unsere Gesundheit besten künstlichen Lichtquellen! Sie sind Wärmestrahler wie die Sonne, die uns genetisch geprägt hat. In der Diskussion um den Ersatz von Halogen-Lampen durch LED-Technik wird fahrlässig ignoriert, dass LED keinen Anteil an langwelligem Rotlicht und kein Infrarotlicht generieren, auf das wir aber genetisch durch das Sonnenspektrum eingestellt sind. Gerade diese roten Spektralanteile der (Halogen-)Glühlampe können aber die negativen Wirkungen der blauen Spektren der Leuchtstofflampen, LED-Beleuchtungen und der PC- und TV-Bildschirme abmildern. Zu viel blaues Licht fördert u.a. die Bildung freier Radikale und stört den circadianen Rhythmus am Abend durch eine Unterdrückung des Schlafhormons Melatonin (Melatoninsuppression). Da wir zunehmend nur noch energieeffizienten Beleuchtungen ausgesetzt sind und Bildschirme immer größer und energiereicher werden, nehmen Schlafstörungen, Verschlechterung des Allgemeinbefindens und die oxidative Schädigung der Netzhaut im Auge (Makuladegeneration - AMD) zu. Zumindest im Privatbereich und für alle Sehaufgaben am Abend ist deshalb die Halogenlampe nicht zu ersetzen! Eine Ausphasung möchte ich vor dem Hintergrund dieses Wissens mit vorsätzlicher Körperverletzung gleichstellen – abgesehen von der Verletzung des demokratischen Bürgerrechts auf die freie Wahl seiner Lichtquelle! Bei den Leuchtstofflampen (und damit auch bei den "Energiesparlampen") gibt es zudem die allgemein anerkannte Quecksilberproblematik: Gewinnung, Verarbeitung und Entsorgung dieses hochgiftigen Schwermetalls belasten nicht nur die Umwelt, sondern auch Mensch und Tier in erheblichem Umfang. Das Sonnenlicht ist der natürliche Standard für das menschliche Auge. Deshalb muss sich künstliches Licht am Spektrum des Sonnenlichtes orientieren! FORDERUNG: Die in 2018 geplante Ausphasung der derzeitig noch zugelassenen Halogenlampen muss aufgehoben werden. Auch wenn im gewerblichen Bereich kostengünstigere Lichttechniken aus wirtschaftlichen Gründen unvermeidlich sind, muss den Menschen im privaten Umfeld der Einsatz von Halogenglühlampen ermöglicht werden, um die Augen zu regenerieren und einen gesunden und erholsamen Schlaf zu finden.   English Halogen lamps are indispensable because they are the best artificial light sources for our health! They are heaters like the sun, which has shaped us genetically. In the discussion about the replacement of halogen lamps by LED technology, it is negligently ignored that LEDs do not generate a portion of long-wave red light and no infrared light, with which we are genetically adjusted to by the solar spectrum. However, these red spectral components of the (halogen) light bulbs can mitigate the negative effects of blue spectra from fluorescent lamps, LED lighting and PC and TV screens. Too much blue light promotes, amongst other things, the formation of free radicals and disrupts the circadian rhythm in the evening by suppressing the sleep hormone melatonin (melatonin suppression). As we are increasingly exposed to energy-efficient lighting and screens become larger and more energy efficient, we are seeing sleep disturbances, deterioration of the general condition, and oxidative damage to the retina (macular degeneration - AMD). At least in the private area and for all visual tasks in the evening, the halogen lamp is therefore irreplaceable! When considering this information, I equate the phasing out of halogen with intentional bodily harm - not to mention the violation of the democratic right of the individual to decide on a light source! In the case of fluorescent lamps (and also "energy saving lamps"), the generally accepted problem of mercury is also present: the extraction, processing and disposal of this highly toxic heavy metal is a burden not only on the environment but also, to a considerable extent, on man and animal. Sunlight is the natural standard for the human eye. Therefore, artificial light must be oriented towards the spectrum of sunlight! Request: The phasing-out of currently still approved halogen lamps, planned for 2018, must be abolished. Even if cost-effective lighting technology is inevitable in the commercial sector for economic reasons, the use of halogen light bulbs in private environments must be allowed in order to regenerate the eyes and to facilitate healthy and restful sleep. This petition will be sent to: ·         Committee on Petitions, German Parliament, MR Wolfgang Finger ·         Committee on Petitions, European Parliament, Peter Jahr ·         Committee on Petitions, European Parliament, Axel Voss

Heinrich Remagen
1,210 supporters