Specialist Access in Medically Underserved Communities
Looking back, I now know how fortunate I’ve been when it comes to healthcare access. When I was younger, I didn’t spend one minute worrying about access to healthcare - I always had it. I grew up in an area of Massachusetts where there’s an abundance of doctors to choose from, though one might wait several weeks to get an appointment for non-emergency concerns.
Throughout my teenage years and early twenties, I hardly visited doctors. I had back pain, yes, but not a diagnosis to worry about (though arguably I should have). Every time I visited a doctor about back pain, the response was always along the lines of "you’re too young to have back pain," which really should have clued someone into the possibility of ankylosing spondylitis.
I reaped the benefits of my parents’ health insurance coverage through my undergrad, then was able to gain health insurance through various employers and, for a time, through the ACA. There were limitations to some of these plans (high deductibles, plans that only cover in-state care, etc.), but typically those limitations did not impact my ability to see specialists and to make appointments without too long of a wait.
Accessing specialists in a rural state
Then I moved to New Mexico, a fairly rural state geographically. I moved to the state’s largest metro area, which as of 2017 totaled a little more than 900,000 people. Larger population centers generally mean greater access. For context, the state’s next largest metro area in the state contains only about ¼ of the population of the Albuquerque metro area. No other city’s population in New Mexico reaches 100,000.
Despite living in the state’s largest city, I still experience issues accessing the care I need. Since my rheumatologist went out on medical leave last year, I’ve had several appointments rescheduled for lack of availability. Though my rheumatology clinic is inside the state’s only Level I trauma center and only academic medical center, the clinic still struggles with provider availability. I am now 9 months out from my last rheumatologist visit, and my next appointment was just pushed back two more months.
From my experience, this is the case at other specialty clinics as well. I also receive care at the eye clinic for my uveitis. When the one ophthalmologist specializing in uveitis moved back to the east coast, he told me (and no doubt all of his other patients) to continue receiving care at the clinic, but if my uveitis flared up I might have to seek care elsewhere. The closest ophthalmologist who specializes in uveitis, he said, was in Denver (a six and a half-hour drive away).
Again, I am fortunate. My AS and uveitis are fairly well-managed. I have not experienced a uveitis flare-up in over a year, and when I do it’s typically mild enough that my steroid eye drops do the trick. But I can’t help but wonder what would happen to me if I were not so fortunate, if I could not afford appropriate healthcare or if I lived in an area of the state with even less access to medical specialists.
New Mexico and healthcare access
In New Mexico, 28% of adults live in a household with an annual income of less than $20,000. In certain regions, that statistic increases to as much as 36%.1 The percentage of adults with reportedly "fair to poor" health directly corresponds to income, with the lowest income groups reporting the highest percentage of adults with a "fair to poor" health status (similar correlations can be made with other social determinants, such as level of education).
Ten of New Mexico’s counties have less than one healthcare provider per 1,000 people, and all but four counties are above the benchmark of 1.7 healthcare providers per 1,000 people.2 How does that convert into wait-times in some of these underserved areas? I can only imagine.
Making the most of the access I have
New Mexico is not the only state with medically underserved communities. Many rural states and rural communities across the country face the same barriers to healthcare access. As a patient with a chronic illness, it’s easy to feel helpless when appointments cannot be kept for lack of providers.To guard against that helplessness, I try to make the most out of the appointments I do have. I make mental and sometimes physical notes of my symptoms throughout the year, make sure all of my questions get answered and do my research so I can make suggestions and participate in my own care.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?