Today is SMA Awareness Day.
Big TreatSMA Cost Survey
How many times have you heard that SMA costs families £5,000, £10,000 or £20,000 to look after a child? Yet we all know that this is not the case. SMA does not start and stop at the hospital door. SMA is not just night stays in the hospital for clinical checks, weekend stays for complications or a weeks stay for infections. SMA is life. It affects us through our lives. It affects our families. It exacts an invisible cost, day in day out. SMA is bloody expensive!
TreatSMA when campaigning for reimbursement has again and again heard figures like £10,000 for an SMA type 2 and £20,000 for a type 1 as the basis for agreeing not to reimburse. We know that the real figure is in the £100,000’s and yet the paying authorities seem to prefer the poorly costed figures, as they support their case to not reimburse. Sadly the hospitals, the research organisations and charities who would normally collect this information, have not and cannot counter this. Instead outdated information from another country (Spain) has been used by NICE to assess the costs of SMA.
So TreatSMA on SMA Awareness Day want to announce the Big TreatSMA Cost Survey. We are pre-enrolling all SMA families to get the cost of care, living and schooling of all children and adults with SMA, not just for the SMA individual, but for the family. It costs, and we want to capture this with a £ sign and send it in to the paying authorities. Please help us to make the case. Enrol now for the Big TreatSMA Cost Survey on the TreatSMA website. We need EVERYONE to participate so we generate reliable figures to send back. Young children, young adults and older sma families. Lets count the cost of this terrible condition and knock down this lie that is holding back the NHS from reimbursing SMA treatment. We want everyone to be able to access treatment. Now we need your support.
To register your interest please send email to treatsma@treatsma.uk with subject: Big TreatSMA Cost Survey.
