The Drive for Our Lives bus tour kicked off the week in sunny Sacramento, California on Monday morning, greeted by NETWORK’s Sister Simone Campbell, doctors, patients, and health care voters.
At the event, we met Joyce, who shared her poem about the importance of fighting to #ProtectOurCare.
— Save My Care (@SaveMyCare) August 1, 2017
We also heard from Charis, who was diagnosed with ankylosing spondylitis, or AS, in 2013.
“AS causes painful inflammation throughout the body, especially the lower back. It can affect organs and cause extreme fatigue. At its worst, AS can completely fuse the spine into a single fragile column of deformed bone, like what happened to my father.
At the time, I had a part time job and no health insurance. This was before the Affordable Care Act was implemented, meaning I could still be penalized for having a pre-existing condition. I found the cheapest, bare bones plan I could so that I could be diagnosed and begin treatment. Nine months later, when the ACA was implemented, I was able to afford a subsidized plan that covered my treatment needs.
Even with adequate care though, I became disabled within a year. The loss of income from not working qualified me for MediCal and I was able to transition into the program without an interruption in care. Continuity in care is essential to managing ankylosing spondylitis.
For me, the most effective treatment is a specialty drug given by IV in an infusion center every eight weeks. I also take a chemotherapy medication and other medications to manage pain and inflammation. I see at least five doctors regularly. I receive in home supportive care so that I can live independently.
My dad died a year ago. He had deteriorated to the point where he was eating through a feeding tube and all-you-can-eat morphine. He didn’t have access to the same medications I do, because they didn’t exist when he was younger.
I’m afraid to lose access to those medications because of cuts to Medicaid. My future will look just as grim as my dad’s crooked back. If federal funding for MediCal is cut, it wouldn’t just harm me, but all of us.”
Missed our event in Sacramento? You can catch it here.