S2E8: Kira Baldonado – The Power of Your Voice Drives Change (pt.2)

Kira Baldonado is back! In this part 2 episode, Jeff Ostroff and Kira pick up where they left off.

Kira's discussion of federal legislation in part 1 leads to a conversation about what states do to address the concerns of those with low vision and their families and caregivers. Kira shares research on the impact of COVID-19 on vision health, the future of new treatments, and how your story can make an impact on others.

Kira explains, at the state level, change is driven by a readiness to act. There needs to be a combined effort between the state health department’s and community organizations with data to drive the allocation of funding. She advises you to “bring together the visionaries in your state” and seek out or form a coalition of people to tell the story of what's happening in your state. She adds, “It works best if it’s a groundswell up.”

Kira names Ohio and New York as examples where this “groundswell up” approach has worked. In conjunction with Prevent Blindness, Ohio's Aging Eye Public Private Partnership created a coalition. As a result, Ohio has changed policy, practices, and resources for the visually impaired community. In New York, advocates are integrating vision health into existing efforts by the state department to improve the wellness of New York’s aging populations.

Jeff follows up with a question about what you should do if you want to replicate successful policy and advocacy efforts in your own state. Kira explains there are resources, toolkits, and templates available at the Center for Vision and Population Health at Prevent Blindness. Using state-level data and the power of your stories, The Center for Vision and Population Health provides recommended actions policymakers can integrate.

Next, Jeff asks Kira about the impact of COVID-19. Kira discusses a correlation between COVID-19 and increased cases of myopia in young children. Additionally, many adults, like patients with MacD, struggled to maintain their crucial eye care appointments and injections. However, Kira does note some positive influences as legislators have become more willing to engage with the story about vision and health. Luckily, Prevent Blindness seamlessly transitioned to remote work and were able to continue their mission when offices were closed.

Jeff closes with a question about hope for things to come. Kira says she sees a bright future ahead in the realm of treatments. There are new ways to treat eye diseases that have been otherwise untreatable. She cites new life-changing genetic therapies including forthcoming clinical trials for retinal diseases like MacD.

Lastly, Kira expresses optimism about the push for vision in the conversation about health care. She concludes with a message for our listeners: “The biggest change you can be a part of right now is the wave of the patient influence and care practice.” She emphasizes, there are many ways you can be a part of the conversation. Other people will benefit from your voice, your passion, and your story.

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/