Patient Voices Blog

In the wake of a global pandemic, we have been advocating for policymakers to leverage every mechanism they can to ensure that affordable, quality health care and safety net supports are equitably available to those who need them. We also want to keep you informed about steps that Congress and policymakers are taking during this public health emergency to protect the health and well-being of patients and families nationwide. As of today (March 19) Congress has passed two bills in response.

It’s no secret that here at NPAF our vision is to bring person-centered care everywhere. We want it to be demanded by all patients and caregivers and integrated into all care settings. This vision is why we’ve been such strong advocates for community-based palliative care. The foundation of palliative care is based on person-centered principles: communicating with empathy; involving caregivers; and acknowledging that patient values and preferences are a fundamental part of delivering quality care. For this reason, NPAF supports state and federal legislation aimed at raising public awareness of palliative care and making training available to clinicians who treat people with serious illnesses.

After company layoffs, my family went from being covered by top notch health insurance coverage to seeking health care solutions as uninsured patients.  As a child listening to my mom and great-grandma talk I would often hear the phrase “we can’t afford to get sick.” As a mother of 5 I quickly learned this was not just a catchy phrase.  Unemployment payments were ending and I had to accept some form of employment.  For the first time I was looking for a job with a company that would match my former benefits – not my pay.

Advocating in state capitols can be messy and feel like mayhem – complete with confrontational opponents and sometimes some really harsh jabs you don’t even see coming. The schedule is also unpredictable. You start early and stay late. Your feet get weary pounding the halls trying to hit all the policy makers’ offices. And of course, even though your proposal may be the best policy idea ever, you don’t always get your way with every stakeholder on board accepting your proposal’s every provision. It's all about patience and persistence.