WIN 2016

Patient perspectives in precision medicine: 'No innovation about us without us'

Dr Francesco de Lorenzo - European Cancer Patient Coalition, Brussels, Belgium

We are taking care of cancer and we are trying to fight inequalities in Europe and we are trying to work for allowing patients to have access to the best therapy in a short time. For doing this we are trying to follow innovation and innovation is very important for cancer patients. The problem is that with innovation we should reduce inequalities but we feel that inequalities are increasing with innovation because the innovated new therapies are having a higher cost and it’s much more difficult for patients to have access to them.

What we feel is that the best innovation that reaches patients late is not an innovation for patients. The other thing is that innovation should be helping all patients and not only some of them. We are taking care of being part of innovation and we feel that it’s not enough to have new therapies if we don’t have a very well working healthcare system because the healthcare system must be on line with innovation to be sure for the patient to have access to these innovating therapies. We are working also trying to allow patients to be part of innovation so we think that we should be more present in the European Commission; cancer patients are present in the expert commission that has been just created a couple of years ago by the European Commission but we as a patient should be more involved also in the biobanking organisation. For example, we feel that it’s very important that patients are those that are allowing biobanking to exist but they have to get some feedback from biobanking. We are trying now to write down a new informed consent having for the patient the possibility to be informed about the feedback of the results that are coming out from their samples and also to make sure that a part of the sample that has been given to the biobank is just kept for the needs of the patient for future kinds of diagnostic use.

So we are trying now to work also for giving our contribution for the best outcome from innovation. The best outcome for innovation is also important to be given through the healthcare assessment of new drugs. We feel that it’s also very important to give a higher value to a pharma that gives the best outcome and the best outcome for patients is also quality of life and is also the opportunity of taking into consideration also the social involvement. For this we think that patients should be involved in the HDA assessment bodies as already NICE did in the UK. But we also appreciate that the EMA is allowing patients to be present since the beginning, also in adapting licensing they are calling patients to discuss with the HDA assessment of the initial work done in clinical trials.

So this meeting was very important because we could first of all ask clinicians and scientists to take care of the value that innovation has for patients and also because it could be a good opportunity for us to know more about what’s going on and how we can be lobbying for ensuring patients have access to the best innovation very soon without having delay that will not be used for the innovation to patients.

Do you have a take home message?

We know that by cancer genomics and we know that having the opportunity to follow the cancer DNA in the blood now there are many more opportunities for a patient to ask for a very highly personalised medicine. This is very important not only for all patients but it’s also very important to save money, not giving very innovative medicine to patients that will not be used in the right diseases. So then all this progress that is going on will be just told from us to each patient organisation as we are doing in our website because in the website, the European Cancer Patients Coalition, we have an immuno-oncology portal that is giving, in  a very easy way, also through animation, a clear picture of how immunotherapy and immuno-oncology is working so that each one of us in the patient organisation know how things go and then afterwards they can tell also to patients what they could expect from immuno-oncology that is now a breakthrough in the new cancer therapy.