Every Day of Vision Loss Is One Too Many: Addressing the Impact of Eye Diseases
How would losing your sight impact your life? From connections to experiences, our eyes are our window to the world, and when vision is lost it can be a devastating experience for many.
Vision loss is an escalating healthcare issue, affecting more than 160 million people globally, yet there remains few, or no, effective treatment options for many eye diseases.
Astellas is committed to helping people with vision loss and helping provide a future where eye diseases are treatable and, ultimately, preventable. The company has established a leading early-stage ophthalmic pipeline over the last decade, combining expertise in eye biology and cutting-edge technologies.
World Sight Day, held each year on the second Thursday in October, provides a moment in time to focus attention on blindness and vision impairment. While it is an important topic every day, Astellas, a Band A member of the International Agency for the Prevention of Blindness (IAPB), recently used this awareness day to join with the eye health community to amplify patient needs and call for better support from policymakers.
Understanding Patient Needs
An urgency to help patients overcome barriers caused by vision loss is a driving force for Astellas.
Stephen Head
Patient Partnerships Lead for Established and International Markets
Stephen Head joined Astellas five years ago with a strong heritage in patient advocacy and healthcare, having worked as a pediatric nurse within HIV, immunology, and infectious diseases.
With a growing global population, including those over 65, the prevalence of vision loss is a rising concern. Age-related sight decline has an adverse effect on patients’ physical and mental health, leading to increased risks of injuries, falls and social isolation. Stephen’s focus in developing strong relationships with patient advocacy groups across disease areas is helping to foster cooperation and collaboration and improving outcomes for people affected by vision loss.
Astellas is just at the start of its journey to support and advocate for people with low vision, Stephen says.
“It’s important for us to take time to listen to, learn from and collaborate with those who have experiences and insights that far exceed ours.”
To achieve this, Stephen adds, Astellas has immediate goals to understand how it can advocate for the vision loss community, using its global footprint to support and advance work already being done by patient organizations. The company also must be recognized as a credible and trusted partner to the vision loss community, he says.
Making a Difference to People’s Lives
Astellas has a dedicated Patient Centricity division working to understand the patient experience, medical need, and behavioral drivers of care. Within this division, the Patient Partnerships team is fostering and building trusted relationships with patient organizations, like the IAPB.
In the last year Astellas has been working to build its credibility and visibility with global patient organizations. This has included multiple activities like open house meetings, workshops, and congress presences to introduce senior leadership, understand what truly matters to patients, and the opportunity to connect and hear from the vision loss community.
Through these partnerships, Astellas listens, learns and aligns its priorities to reflect what matters to patients, Stephen says.
Eye Health on the Policy Agenda
With a background in government as a lead health care policy advisor in US Congress, Tom Fussaro has worked closely within patient advocacy. This included helping author and pass a new law to provide support for family caregivers facing economic hardship.
After moving to policy and government affairs in the pharmaceutical industry, he joined Astellas in 2012 and has worked in market access, global policy and stakeholder strategy for the company. Along with his colleague, Nimesh Patel, he works with a cross-functional team to raise awareness about the impact Geographic Atrophy (GA) has on patients, caregivers and society.
Despite the substantial burden of vision loss, it remains low on many government policy agendas. The impact of eye health is not always evident within health systems, due to third parties and private companies providing care, as well as the uncompensated care provided by family caregivers.
Tom Fussaro
Public Affairs Lead for Ophthalmology and Rare Disease
Astellas is working with patient organizations, healthcare organizations and policy makers to raise the profile of eye health, including the negative impact of GA and vision loss, on the policy agenda of governments globally, Tom says.
“We are working to emphasize unmet needs to pave the way for innovative treatments and identifying barriers to screening and access to care,” he says.
Astellas is launching a toolkit of resources to further educate policy makers worldwide on the specific challenges and needs of patients experiencing GA and vision loss, he says.
Additionally, Astellas is working directly with policy makers to submit parliamentary questions to spur awareness and action supporting patients, as well as consensus statements on unmet need in GA and the importance of access to therapy.
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