Director's Corner: Fighting For What We Care About

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When asked how she would like to be remembered, Justice Ruth Bader Ginsburg said, "Someone who used whatever talent she had to do her work to the very best of her ability. And to help repair tears in her society, to make things a little better through the use of whatever ability she has.”

These are the words on my mind as I reflect on the work of consumer and community advocacy. While our work in these challenging times sometimes feels like a long and difficult road (uphill both ways!), each tear that is repaired matters.

This month, I was delighted to hear Jim Carnes, policy director of our partner Alabama Arise, interviewed on National Public Radio, talking about Medicaid and food security. And to read a report from the Pennsylvania Health Access Network, who have been working tirelessly to ensure that the voice of Medicaid beneficiaries is heard in the effort to improve the critical non-emergency medical transportation (NEMT) services that they rely on to get to their medical appointments. Our Colorado-based partner, the Center for Health Progress, produced a video explaining why these Medicaid NEMT services are so important. And in a step forward in strengthening NEMT benefits that reflect such collective nationwide activism, the House of Representatives in late September passed H.R. 3935, a bill that codifies Medicaid non-emergency medical transportation as a mandatory benefit within the Medicaid statute. That legislation now requires Senate action.

Center Research Director Marc Cohen and colleagues released a report on how paying a living wage for direct care workers would have significant benefits, both for the workers and the broader economy. And Center Deputy Director Renée Markus Hodin and Joshua Traylor of the Health Care Transformation Task Force (HCTTF) joined Hala Durrah, Founder of Patient Advocates Transforming Healthcare (PATH), in an online discussion of the Center/HCTTF jointly produced change package and case studies to support health systems in deepening their patient and family engagement.

Together, each of us working in persistent and creative ways to repair the many tears that need mending moves us forward in ensuring that consumers and communities have a central role in shaping health care programs and policies. With this voice, we can create systems for health that support and care for the whole person and strengthen the communities they serve. 

Without question, we are living through some unprecedented times. But the power of communities pulling together to express their collective voice has brought about change time and again in the most daunting of situations. I’d like to give RBG the last uplifting word as we look ahead to navigating the coming weeks and years together; “Fight for the things that you care about, but do it in a way that will lead others to join you.”