Dear Mrs. Minister:
These days the press has been speaking of the launch of a new funding model for drugs with high economic impact for rare diseases as well as oncology. From the published information, this initiative would have emerged form the Interterritorial Health Council held in June 2017 with the creation of a working group to establish a model for the global approach of all these medicines, which would allow therapeutic studies on their results.
The member organizations of the It’s not Healthy campaign would like to know the results of said work due to the enormous relevance of these new medicines and therapies. Therefore, we would appreciate it if you made the following information available to us:
- The documents produced by the working group and by your ministry that conclude with the need to implement this new funding model for these medicines and therapies, as well as all the details about their management, monitoring and the variables that define the health outcomes for each case;
- The budget allocated to this new funding mechanism, as well as the associated management decisions, given the transfer of competencies to the autonomous communities;
- Other medicines or therapies that are being studied by your ministry and are capable of being incorporated into this new mechanism;
- The procedures developed to ensure the total protection of patient data, as well as their participation and knowledge about the state of development of innovation. In addition, the It’s not Healthy campaign wants to ask about the custody of the data resulting from the treatments, the envisaged mechanism to guide future treatment decisions based on these results and the degree of involvement that laboratories will have in this entire process;
- Know the criteria for fixing prices that your ministry follows and will continue to follow and the transparency mechanisms envisaged to audit the real costs of innovation and production justified by laboratories;
- Given that Spinraza will be funded from March 1, 2018, we would like to know the conditions agreed with the proprietary laboratory in terms of the price financed and the criteria on which the company has set its price, providing information on the innovation and production costs and what they are.
This request for transparency towards your ministry is consistent with our position that patients should have access to medicines if a specialists considers it is clinically effective. But we also want families and patients to have strong and consistent support from all the professionals, hospital units and any necessary home care. It is the Government’s duty to ensure fairness, quality of care and alleviate the pressure on families, but also to fix a reasonable price for new medicines.
The high prices, unjustified by research and production costs, should be negotiated transparently by the Public Administration in order to achieve a fair price and ensure continuity of current and future research. Our opposition is towards the price abuse set by pharmaceutical companies that impedes drug access and affects the finite resources of our current National Health System.
We would like to thank you in advance for your time and, as we have stated in other occasions, we are at your disposal to find a day and time that best suits you.
Cordially,
Member organizations of the It’s not Healthy campaign. Médicos del Mundo, Salud por Derecho, Organización Médica Colegial de España – OMC , Organización de Consumidores y Usuarios – OCU, Sociedad Española de Salud Pública y Administración Sanitaria – SESPAS, Asociación por un Acceso Justo al Medicamento – AAJM, Confederación Española de Consumidores y Usuarios – CECU y cuenta con el apoyo de OXFAM e ISGlobal
www.noessano.org
