Government should be doing more to help DMD patients, says Costello

Fianna Fáil Senator, and Seanad Spokesperson on Health Teresa Costello, has reiterated her frustration at the delay being caused with trying to access Givinostat for patients with DMD.

Lastwek week, Senator Costello was speaking in the Seanad to Minister of State Noel Grealish who was standing in for the Minister for Health, that there is delay after delay with access to the drug.

Stressing the importance of rapid action, Senator Costello said, “Back in June of this year I held a briefing in the AV Room of Leinster House for TDs and Senators.

“That was 105 days ago. Whilst that doesn’t seem like a long time for me and you, it is a lifetime for those boys and their families. Children’s abilities and strength is failing every day that ticks by.

Since June, a rapid review was completed on 15 August, which was completed in eight days. This timeline shows there is an ability to move through the reimbursement process at an accelerated rate.

She added: “The manufacturer tells me it has a scoping meeting with the National Centre for Pharmacoeconomics, NCPE, on 30 September and it will submit a health technology assessment, HTA, in October. The company has not confirmed an exact date, but I was under the impression the NCPE was ready to receive this submission now.

Costello question Minister Grealish on the early access of Givinostat through the North, and how we could access it that way. Minister Grealish ensured Senator Costello that he will feed that back directly to the Minster for Health.

Concluding Senator Costello stated that time is muscle, and rapid access in Ireland to Givinostat is crucial for parent and families, whilst also thanking the Minister for Health for her cooperation so far.

“This drug is a symbol of hope for these families affected by DMD. I acknowledge and thank the work of the Minister for Health so far on this matter.

She said, “She has met with families to discuss a pathway to access Givinostat, along Deputy Pádraig O’Sullivan and me. The Minister has also engaged with the HSE, and everybody involved to get this medicine to patients in Ireland as quickly as possible.

“Ultimately, time is muscle. These boys and their families don’t have time on their side. We have a duty to ensure they get rapid access to medications as quickly as possible.

“This disease chips away at these boys every day as their families watch while feeling helpless. I cannot express how important it is that we develop a bespoke pathway to early access to Givinostat,” she concluded.