We have prepared a statement in response to the recent Roche announcement, specifically relating to the expansion of the compassion access program. Please see below to read the statement.
Dear community,
We welcome Roche’s continued commitment to the SMA community and we are pleased to see that they are expanding their compassion access program, previously only available to type 1 patients, to include type 2 patients who are currently receiving Spinraza, but for whatever reason, are having difficulty getting their next dose. Clearly this is a positive step forward!
However, we, as TreatSMA, are quite disappointed by the announcement, as it does not go far enough to assist the broader community already embattled with managing the current and future Covid-19 risks. While we understand that if someone started the medication today it would take some time to see a positive benefit, we expect that Covid-19 is going to be an issue for some time to come, so early access to this drug is absolutely critical.
As it stands, it could be easily concluded that Roche intends to make a commercial decision and not a decision in the best interest of the patients. This decision appears to provide an opportunity for those on Spinraza to switch, therefore increasing the market share for Risdiplam. Yet, it completely ignores those people who currently do not receive ANY treatment because of their ineligibility or clinical reasons!.
Whilst our previous and on-going discussions with Roche have always been positive and there has always been a drive to facilitate the treatment as soon as possible, we feel this is a step backwards from Roche’s commitment for whatever reasons. We do feel somewhat let down by the new community update and disappointed that despite many months of advocating it seems that Roche have not taken on our comments and continue to do what they feel is most appropriate in a commercial fashion as opposed to a patient centric fashion.
We hope that Roche will reconsider their position and lift limitations for all patients with SMA who urgently need access to this life saving and life changing treatment.
We wanted to share this statement because we understand how disappointed a number of people will be about once again being left out in the cold with no option for treatment. We will continue to push for access to Rasdisplam as soon as possible, as well as continuing our fight to increase eligibility through the MAA for Spinraza.
TreatSMA team
