Call for Action! Melanoma Patients, Advocates, Carers
Dear Melanoma Patients, Advocates, Carers,
I am a stage IV melanoma patient residing in Belgium. I am the president and founder of the melanoma independent community advisory board (M-ICAB). Our purpose is to develop innovative approaches and solutions for melanoma patients that would not be achievable by single actors alone, based on a true and meaningful partnership with researchers/clinicians, the pharmaceutical/diagnostic companies, the EU and regulatory bodies.
Given the recent approval by FDA and EMA of innovative therapies for advanced melanoma, we are conducting a short survey (6 questions; maximum 7 minutes) to get a better understanding of the condition of access to these new treatments across Europe. This information is essential for EU melanoma patient advocates who are fighting for their right to a better quality of life. To complete the survey, visit the following link: https://www.surveymonkey.com/s/Z7J22F7
Given the high price of these therapies most HTA bodies around EU might not reimburse these treatments and thus we need patients to become aware and involved in decision-making within each of your countries – this is why we would also appreciate if you can distribute the attached flyer, which is a call to patients to raise their voices and express what these innovative therapies represent in the life of advanced melanoma patients and their families and carers. For example, NICE in the UK has initially refused the reimbursement of YERVOY but patients have an opportunity to become involved http://www.factor50.org.uk/pdf/patient_pack.pdf also seehttp://guidance.nice.org.uk/TA/WaveCRS2/48/Consultation/Latest . Other EU countries will be confronted with similar challenges and they will need to become involved.
Download the M-ICAB call for action flyer by clicking the link attached to this post.
We would greatly appreciate your time and partnership.