The general election campaigns are now in full swing and candidates are contacting citizens asking for support. This is a two-way process and an opportunity for our members and supporters to ask the political candidate to get behind the issues close to our heart.
We encourage everyone to share their personal stories and impress upon candidates the needs of the sight-loss community.
We have crafted a list of four core demands; you may wish to print these and keep them by the front door to give to calling candidates, or talk about the ones that you care most about.
In 2019, the wellbeing cost of living with an inherited retinal degeneration (IRD) in Ireland was in the region of €27 million. This equates to about €10,500 per individual, each year.
We measure wellbeing costs in a non-financial approach. Instead, we measure the impact of anxiety, depression, loneliness and financial stress.
This means that, alongside significant economic costs, IRDs create a large well-being impact for people living with an IRD and their families.
Living with a disability costs money. Affected individuals and their families carry this financial burden. The cost of living with an IRD is equal to the weekly disability allowance of €203; driving citizens into consistent poverty.
Waiting lists for eye care are alarming. They cause sight problems to reduce quality of life for longer than necessary. People with rare degenerative eye conditions are not monitored on a regular basis. As a result, we are unable to learn more about these complex conditions and long-term effects.
Everyone has a right to a genetic diagnosis. It can provide access to personalised medicine, clinical trials and genetic counselling. It can help family decision-making. A genetic test should be a human right.
Ireland needs a national registry for rare retinal disease. Target 5000 is building a database of people with inherited retinal degeneration. It will provide access to research, support services and counselling.
This year, we expect the figure for those who are blind or visually impaired to reach 272,000. These citizens are not receiving their entitlement to the quality of services required. Future health and social care strategies must address this problem.
Therapies – or personalised medicines – are now becoming available. In some cases, they can cure certain conditions.
The Government can decide if it will reimburse these treatments. Without their support, these therapies are unaffordable for most citizens. We want medicine available for the few, not just the many.
The debate so far has tended to focus on cost rather than impact. But we see it as an investment, not a cost. We need commitment from our political leaders that they will intervene on our behalf.
We want the Government to reimburse sight-saving therapies. When the Government assesses a treatment for reimbursement, we want them to include the impact of wellbeing costs.