Fighting Blindness

Lobbying Organisation Fighting Blindness

Date published 10 May, 2022

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 Jan, 2022 to 30 Apr, 2022

Specific Details The HSE reimbursement of gene therapy 'Luxturna'

Intended results Fighting Blindness hopes to have gene therapy Luxturna made available to those patients with a mutated RPE65 gene that causes sight loss.

Name of person primarily responsible for lobbying on this activity Neil Ward

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? Yes

What is the directive you gave to the grassroots campaigners? We asked our members, supporters and friends to email their local politicians to support the reimbursement of the gene therapy Luxturna.

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (11-20)

Seeking update on decision-making progress; raising parliamentary questions. The HTA process from rapid review has already taken one year longer than the average. Ireland is now the only country in Western Europe not reimbursing this life-changing therapy . Four citizens are losing photoreceptors daily as they await this decision with growing uncertainty. There is wider growing anger and despair in the sight loss community.

Meeting (1)

Former CEO Kevin Whelan met with the deputy in his local constituency.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Stephen Donnelly Minister (Department of Health)

Pádraig O'Sullivan TD (Dáil Éireann, the Oireachtas)

Neasa Hourigan TD (Dáil Éireann, the Oireachtas)

Alan O'Connor Councillor (Cork County Council)

Peter Burke TD (Dáil Éireann, the Oireachtas)