The Ministry of Health has announced this week the launch of a new model of financing medicines of high economic and health impact aimed at new therapies for rare diseases and cancer. This initiative was agreed on at the by Interterritorial Council in June 2017 with the creation of a working group intended to establish a model for a comprehensive approach to all of these medicines that would allow therapeutic studies on the results.
The first of the drugs that will be available in March, according to this new funding model, is Spinraza for muscular atrophy, that will reach approximately 400 patients. At It’s not Healthy we celebrate this news and that the medicines, when proven to be really effective, reach all the people who need them.
We also want to express our concern for the sustainability and feasibility of a drug-financing model that accepts the extremely high prices demanded by companies, such as the 400,000 euros per patient per year for the treatment Spinraza, to which in the short term will see the addition of new personalized immunotherapies and cancer treatments whose prices about the same or may even exceed them. Laboratories ask for the highest prices that patients or governments are willing to pay, but drugs are a right and not speculative investment funds.
Governments must therefore pay reasonable and duly justified prices, covering the actual costs of research and development, but not of exorbitant profits. In addition, the necessary investment in R&D for rare diseases and oncology should have maximum control of the costs and the rigor of the administrations to ensure current and future research, as we are talking about saving lives.
In It’s not Healthy, we consider that creating specific funds by assuming abusive prices for new medicines, without discussion, is detrimental to the National Health System and its sustainability. All patients would pay with the consequent deterioration in quality and loss of services, as it does not allow the funding of other aspects of public health with a proven impact on population and individual health.
It is essential that this new model be accompanied by the necessary transparency on the fixation of these prices, including the audit of the presented costs, the decision-making processes of the Ministry and the criteria utilized. We understand that measures like this, with such a high economic impact, where current and future care for patients is at stake, should count on the scrutiny and monitoring offered by transparency mechanisms.
The member entities of the campaign, among which are health, consumer organizations and NGOs, are concerned about the government’s high prices for medicines for rare diseases and oncology, which in many cases translates to impractical spending for the health systems.
Photography: Jeso Carneiro/Flicker