Advocacy is a term used by patient groups all over the world who are working to raise awareness of a cause, often to influence those who develop legislation to implement positive changes that they believe will impact society in a positive way.
Retina International and its stakeholders advocate for the implementation of policies to promote research and development, the inclusion of the patient voice in all policies that affect them and to improve access to therapies that can improve their lives.
Advocacy comes in different forms, including self-advocacy, citizen advocacy and independent advocacy.
Advocacy is key to people with unmet medical needs and disabilities who wish to access a proper diagnosis and access to the medical expertise and interventions that will help them to better understand their condition and prognosis. Often this piece of ‘advocacy’ can be in engaging the local healthcare provider (HCP) and even your personal doctor.
People living with disabilities can often be in a situation where they are not getting access to their entitlements. In this case, a person may need to engage their medical professionals but also local counsellors to advocate for their needs. In this case a person can advocate locally for services that can help them in their day to day lives, but they can also work with peers to engage a specific community to work together at a local or national level to ensure that all those with the same needs for the same support or services can use their collective voice to increase the chances of success in achieving their goals.
Advocacy is also becoming much more effective at a super-national or global level to influence decision making that has a global impact. The advent of computer technology and communications platforms has made it much easier to work globally and this is a particular objective of our organization. Since Retina International was formed, we have witnessed huge strides made by the medical and scientific community in uncovering the genetic changes that can lead to degenerative vision loss. These efforts are beginning to bear fruit with the first ocular gene therapy approved and launched onto the market in 2017. However, this stellar progress would not have been possible without strong patient advocacy. Now that treatments are within reach for some conditions and on the horizon for others, patient advocacy needs to continue in order to ensure access to the appropriate testing and access to treatments for those who need them.