SMA UK and other patient groups are all members of the Access to Employment Committee, which oversees the launch of the Access to Employment Agreement (MAA). If you are concerned about your access, please speak first with your medical team, but please contact us if you would like to discuss what is going on. Adults with spinal muscular atrophy (ADM) can now be treated with spinraza (Nusinersen) at three new sites in England. Another important change in the MAA is that the treatment centres will have specialized advice from a multidisciplinary team in the form of a group of clinical experts set up by NHS England on the feasibility of intrathecal administration of Spinraza. This ensures that access to treatment is not affected by differences in doctors` ability to administer them. All children with type 1 ADM have previously been treated on APU, continuing to have access to treatment. The MAA is a special agreement between NICE, NHS England and NHS Improvement and Biogen. It allows patients to access nude treatment, while collecting data on their effects in groups where additional evidence is needed to address the uncertainties identified by NICE`s independent evaluation committee in its initial assessment of nusiners. The MAA is also designed to address the financial risks and challenges of implementing the NHS. This is not a routine commissioning of Nusinersen in accordance with its marketing authorization. This is an overview of the content of the subscription, log in to check access. Biogens Community Update for Those Transferred from Nusinersen EAP to Managed Access Agreement is a drug that attempts to correct the expression of defective NMS proteins that causes spinal muscular atrophy (ADM), and has been the subject of a highly successful global multi-center study, which also included GOSH.

This saw striking results, where the drug brought visible improvements in the motor and airway results. Children with type 1 ADM have had access to this treatment since 2017. Impact of Covid-19 on access and access to risdiplam`s use compassion program “At the time, we said we are not closing the door on these people. Unique to this type of agreement, we are committed to verifying new evidence of the potential usefulness of Nusinersen for type III ADM patients who do not currently receive it. If this audit shows that these patients would benefit, we recommend that they be included in the MAA in order to obtain nusinersen. In February/March 2020, we worked with other patient groups to gather community-based information on who wants access to treatment. 145 people responded. We have succeeded with many liased centers, where treatment begins slowly. A comprehensive summary was sent to the adult services network, NICE and NHS England.