The Spanish Association of Orphan and Ultra Orphan Drug Laboratories(AELMHU) has presented its contributions to the Draft Bill of the Public Health Law of the Community of Madrid.
From our association, we welcome the fact that the Government of the Community of Madrid and its Ministry of Health want to respond to the need to update and adapt this Law, and we propose to include in this regulation the orientation of activities for early detection, diagnosis and early treatment of rare and ultra-rare diseases. Incorporating rare and ultra-rare diseases in the legislation allows us to move towards a fairer, more inclusive system that is prepared to respond to the needs of the entire population.
RECOMMENDATIONS
The following are some proposals for recommendations in the development of future lines of regulatory action, with the aim of optimizing direct patient care, promoting research, strengthening prevention and dissemination actions, improving coordination between institutions and developing specific therapies for rare and ultra-rare diseases:
- Include rare diseases in the autonomous Public Health Law, with specific measures for prevention, diagnosis, care and follow-up.
- Request the inclusion of as many rare diseases as possible in the neonatal screening program as a common tool for early and accessible detection.
- Recognize the social value of orphan drugs in the evaluation processes, incorporating social, economic and family impact indicators.
- Streamline access procedures, reducing waiting times and guaranteeing territorial equity.
- Promote and encourage innovation to ensure the health and well-being of citizens throughout their lives.
- Strengthen information systems, expanding automatic data collection, incorporating data from the private sector and improving interoperability with the ReeR.
- Encourage and promote public-private collaboration in research, development and the improvement of accessibility to these drugs.
- Promote the active participation of patients and associations in the planning, monitoring and evaluation of public policies.
