Spanish Government presents work plan to improve treatment of rare diseases
140 new reference units will be designated to treat these diseases, a statewide registry will be created and prior levels of investment in research will be maintained.
In 2011, the Spanish Government will maintain their previous level of investment in rare diseases (RD), which surpassed 12 million euros in 2010. This morning, ministers of Health, Social Policy and Equality and Science and Innovation, Leire Pajín and Cristina Garmendia, respectively, presented the 2011-2012 work plan for the treatment of rare diseases to the Senate.
Rare diseases are considered to be those that occur in less than one in 2,000 inhabitants but that, given the large number of pathologies, as a group affect between 4% and 8% of the general population.
This plan will speed up application of the National Healthcare System’s (NHS) Rare Diseases Strategy, approved in 2009, from three approaches: healthcare, science and socioeconomics.
In her intervention, Minister Leire Pajín committed to “taking a leap forward in research, care and treatment of these diseases over the coming 12 months.”
Noteworthy among the measures expected to be implemented in the healthcare arena are public funding of orphan drugs (there are now 51 medications authorized in Spain for these diseases), drafting a common document for the NHS establishing basic contents and more adequate techniquesfor neonatal screening, and increasing the reference units for treating these pathologies from 27 to 140.
Minister Cristina Garmendia pointed out that “the Government is committed to maintaining investment in the Carlos III Health Institute over the coming years, which totals more than 12 million euros per year.”
The planned measures in scientific fields include drafting a statewide registry with information on the impact and prevalence of these pathologies and developing practical clinical guides and reports to evaluate medical technology for use throughout the country. They also intend to increase staff at the Carlos III Institute’s Rare Diseases Register, drive RD Applied Genetics Unitsand strengthen the biobank.
In order to “bring the best research, as far as possible, into the realm of patient and family care,” explained Minister Garmendia, the MICINN will foster collaboration among rare diseases units and research programs from healthcare research institutes, as well as allowing researchers to access the new statewide registry, which is also laid out in this new work plan for 2011-2012.
Work plan (in Spanish)