Patient Voices Blog

Had Maryland opted-out of offering their residents a Marketplace option, I could have been uninsured: my income was too high to qualify for Medicaid and I couldn’t afford private insurance. Simply put, I would not have had access to healthcare, necessary screenings and essential treatments. Not having health insurance could have set my health back years and, with that, I could have suffered lifelong consequences. I was young, but youth is not a guarantee for absolute health. 

 Patient Congress was held on September 23-25, bringing together nearly 100 volunteers, advocacy partners and stakeholders virtually with Patient Advocate Foundation and NPAF staff for a range of interactive sessions focused on community advocacy and engagement

I had to search for his advanced care documents after he passed. What I found was paperwork showing that he had cashed out all his retirement while waiting the 3 years it took to get approved for Social Security Disability. I found credit card statements with thousands of dollars of debt on them, one still with my Mom on it. Also, documents that needed to be sent in for life insurance to be given to my sister and me, signed, sealed, stamped ready to go. But, they were never mailed, just lying in his file of other unorganized paperwork.

I recently celebrated my seventy-fifth birthday with family. While some of the celebration was virtual, some of the family were able to visit me. During this time, the conversation turned to the present situation of Covid-19. It was a perfect time to discuss care planning with my children, grandchildren and even in the presence of my great grandchild. I have given my backup person, as well as my alternate backup person, copies of my wishes and I remind them to refer to the forms that I have given them. Sometimes I can see the reaction of my bringing it up again. I assure them that is important to my wellness and to decrease their level of anxiety in the event they have to share my wishes and requests in making decisions.

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.