Jeff Ostroff speaks with Kira Baldonado, Vice President of Public Policy and Health at Prevent Blindness. Kira brings two decades of public health advocacy and leadership experience to the conversation. In this episode, Kira shares her current public policy and advocacy efforts and how it affects people with MacD, your families, and other caregivers. She explores how you can use your voice and your vote to support changes in healthcare. 

Prevent Blindness is an organization that takes a public health approach to vision and eye health. They are focused on providing early detection of vision problems, getting people access to care, and helping those who may have experienced vision loss experience a high quality of life. Their key focus is Education, Advocacy, and Empowerment. 

Kira shares how her inspiration evolved over the two decades she’s worked at Prevent Blindness. First, as a mother advocating for early childcare vision screening for her son and his preschool peers; then later in life, as family members experienced vision loss due to diabetes-related eye disease. Jeff opens up about his own experiences with diabetes and the importance of annual eye exams.  

Next, Kira discusses the collaborative research initiatives between The SupportSight Foundation and Prevent Blindness. The two organizations worked together on a clinical research survey, called Mosaic, which aimed to understand how MacD impacts individuals and their caregiver, many of whom are spouses and family members. 

Next, Jeff pivots to federal policy changes under Medicare, something many of you have a vested interest in. Kira critiques the 2022 Build Back Better Act for not including vision and hearing care coverage under Medicare. She highlights, “We all need to use the power of our voice through voting to make sure we have individuals in the legislature that understand the importance of more comprehensive access to healthcare.” She mentions that access for Assistive Technology devices is particularly restrictive due to laws currently in place. They are fighting to change that. 

On the topic of health care, Prevent Blindness centers public health research and community-level interventions, with funding through organizations like the Center for Disease Control and Prevention and the National Eye Institute. Beyond the clinical research, Prevent Blindness looks to get early detection practices, education initiatives, and care for communities in need. She places a strong emphasis on using the data to understand what communities are benefiting from vision care access, and where more support is needed.  

Kira then expands on another community initiative called Aspect--a patient engagement program that offers training that empowers you to share your story of vision loss, or caretaking, with key stakeholders to improve clinical trials and care. Kira says, “It's the story of the individual that the speaks loudest in the room to drive change.” 

Kira and Jeff end part 1 of the episode by exploring the need for a balanced approach to public health research and greater funding. One that not only focuses on the new developments in scientific discovery, but also examines which populations are benefiting and which populations are underserved. 

Stay tuned for next week’s part 2!

Recommended Resources

• https://preventblindness.org/
• http://www.supportsight.org/
• http://www.mymacdlife.org/
• https://www.vispero.com/
• https://www.freedomscientific.com/
• https://www.freedomscientific.com/products/lowvision/omnireader/
• https://www.enhancedvision.com/
• https://us.optelec.com/
• https://www.healthyvisionassociation.com/
• https://www.novartis.com/
• https://www.centricbank.com/
• https://www.hinklestein.com/
• https://www.maculardegeneration.net/
• https://www.mymacularjournal.com/
• https://www.facebook.com/groups/mymacularjournal/
• https://www.health-union.com/