The Melanoma Independent Community Advisory Board was founded on March 22nd 2011
Melanoma Stakeholders: Realising Our Impact on Access
The Melanoma-Independent Community Advisory Board (M-ICAB) and the European Cancer Patient Coalition (ECPC) are pleased to announce that the 2nd M-ICAB conference, Melanoma Stakeholders: Realising Our Impact on Access, will take place on 23-24 April in Brussels, Belgium.
This event is part of M-ICAB’s ongoing effort to ensure that the patient perspective is at the centre of policy and decision-making related to melanoma. The conference will convene all of the players – including patients and patient-advocates – who have a stake in advancing the melanoma treatment landscape to engage in dialogue and achieve mutual goals and objectives.
Discussions will focus on sharing the melanoma treatment and management landscape and identifying barriers to access for all patients in Europe. By the end of the meeting, we hope to have a list of concrete action items that can be taken on by various stakeholders to directly improve the state of care for those with melanoma.
Please visit our Event Page or view the Conference Announcement for more information.
Clinical Trials - Are Patients 'Lost in Translation?
Watch Patricia Garcia-Prieto's presentation during the Patient Advocacy/Ethics Track at the 2011 European Multidisciplinary Cancer Congress in Stockholm speaking about 'Clinical Trials - Are Patients 'Lost in Translation?'.
Call for action
Dear Melanoma Patients, Advocates, Carers,
I am a stage IV melanoma patient residing in Belgium. I am the president and founder of themelanoma 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 question 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 whom are fighting for their right to a better quality of life. To facilitate the completion of the survey you can go to 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 diffuse the attached flyer and 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 refuse the reimbursement of YERVOY but patients have an opportunity to become involved http://www.factor50.org.uk/pdf/patient_pack.pdf also see http://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
We would greatly appreciate your time and partnership
Best
Patricia Garcia-Prieto
President and founder
http://www.m-icab.org/
The President of the Melanoma Independent Community Advisory Board visits the CNIO
On Friday September 16th, 2011, the President of the mICAB, Patricia García Prieto, visited the Spanish National Cancer Research Centre (CNIO) invited by Dr. María S. Soengas, Head of the CNIO.’s Melanoma Group as well as Director of the Molecular Pathology Programme at the CNIO. This visit reflects the shared interest of both institutions in promoting melanoma research and bringing it closer to the reality faced by patients.
Read the full press release
"Terminal patients are very tough negotiators
Read Patricia García-Prieto's interview with El País, the widest selling non-sports newspaper in Spain.
Vemurafenib Approved! Good News for Melanoma Patients
FDA approves Zelboraf (vemurafenib) and companion diagnostic for BRAF mutation-positive metastatic melanoma, a deadly form of skin cancer first and only Personalized Medicine Shown to help people With BRAF V600E mutation-positive metastatic Melanoma, Found in half of Melanoma patients, live longer.
Watch Jedd D. Wolchok, MD commenting the appoval of Vemurafenib (Medscape account needed)
Patricia presentation EORTC 90902011
on the occasion of the 2nd EORTC Symposium on Quality of Life Research Quality of Life, Symptom Research and Patient Reported Outcomes in Cancer Clinical Trials on September 9, 2011 in the European Parliament.
The symposium aimed to cover a broad range of topics in HRQOL, Symptom Research and Cancer clinical trials. It addressed recent developments of EORTC tools, as well as other measures for use in clinical trials, but also have a broader focus including discussing international developments and research in oncology. The faculty are international key opinion leaders in their field who were be able to provide diverse opinions on HRQOL. All aspects of designing, conducting and analysing HRQOL in clinical trials were discussed. In addition key EU legislators interacted with European patient groups to foster greater collaboration for advanced quality of life research.
Link to the presentation:
http://www.informed-scientist.org/presentation/getting-patients-included-in-clinical-trials
Beyond Ipilimumab: New Approaches Target the Immunological Synapse
The March 25 approval of ipilimumab (Yervoy) by the U.S. Food and Drug Administration was a milestone for the embattled field of cancer immunotherapy. As the first agent to increase overall survival in a phase III melanoma trial, ipilimumab appeared to vindicate the immune surveillance hypothesis of cancer first proposed in 1957. That hypothesis, which posits that the immune system plays a key role in keeping tumors in check, gave rise to hopes that boosting the immune system could eradicate established tumors. After three decades of almost continual futility in the clinic, ipilimumab is the first clear success: It produces durable, complete responses in a small but consistent proportion of melanoma patients.
Table on the available anti-PD-1 and anti-PDL-1 clinical trials for advanced melanoma patients
Dear Melanoma Patients,
We need access to the latest clinical trial information, because for many of us, clinical trials offer the best treatment options. Ipilimumab (Yervoy) is a remarkable landmark in the immunological treatment of advanced melanoma, but it will only positively affect a minority of us. Other very promising sister immunomodulatory drugs are also in development, particularly those directed at the PD pathway : anti-PD-1 and anti-PDL-1. However, their progress through clinical trials has often been hard to follow.
YERVOY™ (ipilimumab) approved for the Treatment of Previously-Treated Advanced Melanoma in the EU
First and Only Approved Therapy for Pre-treated Unresectable or Metastatic Melanoma to Demonstrate a Significant Improvement in Overall Survival. First EU-Approved Therapy for Pre-treated Unresectable or Metastatic Melanoma in More Than Two Decades.
Bristol-Myers Squibb announced on July 14, 2011, that the European Commission has approved YERVOY™ (ipilimumab) for the treatment of adult patients with previously-treated advanced melanoma.