My father died last September. He was 68. He experienced severe, debilitating pain from his early teenage years until his death. I now experience similar pain from the same disease he had, Ankylosing Spondylitis (AS), and I fear daily that my life will follow the same path his did.
My dad looked like this (below) because he did not have access from a young age to effective treatments to slow down the progression of his disease:
He didn’t have access to the treatments because they didn’t exist until 2003, when the first biologic drug was approved for treating patients with AS. By that time he was already a 90-degree hunchback, his spine fused in a rigid column of bone from knobby, painful bone spurs – he was slowly suffocating. The only thing a biologic drug could do was prolong his life and perhaps reduce some of the symptoms.
He died after two surgeries meant to straighten his spine, relieve his organs from being crushed, and give him a more horizontal line of sight. He’d been looking straight down at the ground for decades, unable to see in front of him unless he pivoted his body backwards with one foot pushed toe-first into the ground.
I learned I had AS in 2013 after a period of sudden, un-treatable illnesses that left me in pain and unable to breathe. Urgent Care doctors blamed my frequent visits on panic attacks and attempted to send me on my way with anxiety medication, but I knew my body better than that.
It was only after I was diagnosed that seemingly unrelated symptoms fell into place and fit the package of this systemic (whole-body) disease that relentlessly attacks me rain or shine. When I looked back to my teenage years and pieced together symptom after symptom, year after year, I saw all the red flags we missed. When I looked to my future I saw my dad: a horribly deformed, severely disabled person. Is that what would happen to me, despite my life full of sports, healthy eating, and hard work?
Would I become my dad?
My diagnosis came as I was transitioning into a full-time job on top of part-time work. The previous year had been stressful: I’d moved across the country, pieced together various jobs here and there, and had just quit my most recent job as a professional mover to begin working as a bicycle advocate. I was in the prime of my new life as a recent college graduate, making a living using the strength and health of my own body.
But my diagnosis nudged me off course enough to fly off a cliff and fall sharply into sickness and despair.
I aggressively sought top-tier treatments (biologic drugs), wanting to slow the progression of the disease as quickly and as much as possible. I was fortunate to have access to more affordable care and treatment when the Affordable Care Act was implemented in 2014. Yet despite my best efforts, a little over a year after my diagnosis I could no longer work.
Exercise is an important aspect of managing AS but, with my athlete brain, exercise backfired. Pushing through the pain to finish a workout only caused my disease to flare, increasing my pain and fatigue and leaving me in bed for days. My inability to exercise and loss of identity as a hardworking employee restricted my ability to keep resilient and healthy. My stress, anxiety and other emotions came to the surface more and I received additional diagnoses: Major Depressive Disorder, Anxiety, and Post-Traumatic Stress Disorder.
Mental illness – especially depression – is a common comorbidity for people living with chronic disease; the exhaustion of caring for an ungrateful, permanently diseased body causes undue stress on the brain. I take anxiety medication when someone dies, during breakups, before doctor appointments, and when I think about my pending disability application. I take medications to reduce nightmares and flashbacks so I can get to the bathroom in the middle of the night without reliving tragedies and traumas I’ve experienced my entire life.
For Ankylosing Spondylitis I receive a biologic medication infusion every six weeks, prescription anti-inflammatories, opioid pain medication, and sometimes steroids. At my last appointment with my specialist, I shared that my wrist and hand pain keeps worsening – I can’t type, unlock a door, or shake hands without excruciating pain. My doctor said, “Your disease continues to progress and get worse” and presented two options: increase my infusion dose or add a chemotherapy medication. Recalling how hard I fought for Medicaid to approve a previous infusion dose increase, I opted for the chemo medication for now.
I’m 30. There is still time to prevent my spine from fusing, but only as long as I have access to effective treatments and adequate care. My dad couldn’t access certain treatments because they didn’t exist when he was my age – but what if I can’t access them because insurance will not cover them? If lawmakers cut funding, and therefore access, to programs and care options for people like me who need them most, I could still face a future like my father’s.
When elected, legislators assume responsibility for acting in the best interests of their constituents. To me this includes easing the burden of poverty and disease for medically and financially marginalized Americans, who make up a considerable chunk of the population of the USA. According to the Census Bureau, 13.5% of Americans live in poverty – financially vulnerable populations seek medical care less often because they cannot afford it. That’s where programs like Medicaid come into play.
In California, for example, Medicaid covers 14.1 million residents, including 60% of its children – over 1/3 of the state. Were the state to lose federal funding for the program, low-income people would not be the only ones to suffer. “Replacing lost federal funds,” according to Health Access California, “would require a 20-25% state tax increase, or deep cuts to…education, corrections, human services, transportation, or environmental protection.” Nationally, the nonpartisan CBO score reports that the current version of the AHCA would cause 23 million people to lose their health insurance. We’re talking worse than pre-Affordable Care Act days.
The details above are only a drop in the bucket.
Healthcare policy should first and foremost address the needs of people whose lives hang in the balance between budget cuts and care. If federal funds are cut from programs that provide vital services and healthcare, Washington is sending a message not just to me, but to millions of people who struggle every day to survive, that our healthcare and our lives do not matter.
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