Early Detection

Enable early detection and access to treatments and rehabilitation services (medical devices and assistive aids)

The prevalence rates for AMD among the working population aged 50–59 years in Europe is growing. The steep rise in the number of those affected coupled with the increasing age of retirement means the negative impact of AMD on economic activity is becoming increasingly pronounced.

Early detection is essential for timely diagnosis and optimal care for people living with AMD. Those with the early and intermediate stages of AMD do not usually experience obvious symptoms. Therefore, without early detection programmes, diagnosis can come too late for treatments and/or lifestyle changes to be effective.

Differences in early detection capabilities and adoption of new technologies across Member States create inequalities for patients. In addition, aging people living with AMD often have comorbidities and must go through long, complex, and fragmented care pathways.

It is also a major challenge for people living with AMD to obtain adequate disability assessments in their Member States leading to exclusion from access to social care, services and independent living.

Medical devices and assistive aids are critical to enhance the quality of life for AMD patients, however, they may not be included in a reimbursement system or available through a dedicated programme in all Member States. (6)

We welcome proposed changes to existing legislation designed to strengthen incentives for the faster launch and earlier access to medicines for patients and call on Member States to meet their responsibility of ensuring their availability, access and affordability as part of their responsibility to provide effective universal health coverage. This can be achieved through strategies for expanding early access programmes; ensuring legal clarity for cross-border access to approved treatments; and reviewing the directive on pricing transparency for medicinal products under national health insurance systems.

To ensure the early detection and timely access to treatment and rehabilitation services, including medical devices and assistive aids, Retina International calls on incoming MEPs and political parties and groupings to:

• Acknowledge AMD patients as a vulnerable population with a high unmet need and to establish a comprehensive European approach to the early detection of AMD through the creation of a European multistakeholder expert group.

• Design and implement early detection programmes through enhancing the collaboration across Member States. This will ensure the identification and sharing of best practices and the equitable implementation of advanced diagnostic technologies.

• Guide the establishment of available, accessible, affordable, and standardised rehabilitation services for individuals with AMD that address their mobility needs and bridge digital inequalities. This should be achieved through the implementation of standards for low vision rehabilitation in Member States; collaboration for sharing of best practices; and the consistent implementation of national programmes.

• Direct Member States and their regions to approve national protocols for social and healthcare coordination of eye care as a guide for patients and carers on access to services, benefits, and aides. To support this, best practice examples of peer-to-peer support should be identified and shared across Member States, and their implementation funded through national or European programmes.

Retina International recommends a stepwise approach to introduction of early detection programmes for AMD:

• In countries where there are routine early detection services for Diabetes Related Eye Diseases (DED), we call for the addition of AMD screening.

• Early detection services for AMD in the over-50s (independent of the presence of diabetes) will best be achieved by subdividing this group into low/medium/high risk groups, based on family history, age, genetics, and other appropriate risk factors, and introducing screening in a stepwise manner.