Patient Voices Blog

I was terrified of the possibility of dying because that is the probable outcome for someone like me with cystic fibrosis. But with the health challenges I have faced in the past, having numerous instances of coming close to dying, how much greater should the fear be this time? The statistics for outcomes for this pandemic are pasted on every news channel. The mortality rate is known. Whereas, when my lung collapsed requiring 3 surgeries, when I developed bacterial pneumonia with necrosis, and when I was on oxygen 24/7 suffocating due to the volume of mucus in my lungs from an infection last year, I didn’t realize the magnitude of danger.

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.