The Spanish patient association for spinal muscular atrophy (SMA) is the Fundación Atrofia Muscular Espinal (FundAME). FundAME is currently following several strategies to support the implementation of SMA newborn screening (NBS). The Alliance and SMA Europe want to support these initiatives and share best practices between SMA patient associations.
- In the meetings held with the Spanish Ministry of Health, FundAME learned of the importance of the Neonatal Screening Pilots to facilitate the incorporation of these pilots into the National Newborn Screening Program. FundAME agrees Screening Pilots are the best strategy nowadays, to facilitate the New Born Screening and seeks to promote financial support either by industry or other financers. Pilots should be just the first step to the incorporation of the SMA to the New Born screening by the Ministry of Health. Having access to healthcare is a right of children, and therefore it is the duty of the State to fund it.
- FundAME supported the initiatives of NBS Pilots when regional authorities limited their authorization.
- FundAME ensured that the design of the different Pilots complies with Ethical Criteria and that appropriate protocols are established.
- FundAME is actively politically, either on their own or supported by the Spanish umbrella patient associations FEDER or ASEM, – FundAME has been part of a roundtable with the parliamentary representatives of the different political parties. Although it is true that there is verbal support from all political parties (government and opposition), we consider that a political strategy cannot be the only way to sustain the implementation of NBS for SMA.
- FundAME updates the Ministry of Health in an ongoing basis about the evidence supporting NBS for SMA.
- FundAME highlights the importance of NBS for SMA in all forums and in talks with professionals.
• Align FundAME with the different scientific societies concerned in order to support NBS when attending the meetings with the Ministry of Health and the Autonomous Communities as one voice
• Align our strategies with those of other pathologies that are currently also requesting neonatal screenings
• Continue to advocate for support from political parties
• Continue contacting the different screening laboratories that could implement a NBS Pilots and searching for funding from industry or other entities.
• Gaining the support of individual initiatives
• Cooperating closely with the European Alliance for Newborn Screening in SMA in their NBS strategies.