Category Archives: ACA

ACA, Autoimmunity, Wilder

Rumination – Health and Healthcare

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It’s late in the morning, sunlight streaming through the trees. The cicadas are singing loudly with the birds working hard to keep up. Music is playing softly from my hydration vest, Thirty Seconds to Mars drowning out my ragged, raspy breathing (note to self #1 – use inhaler before next run in the woods). In the back of my mind is the reminder that the last time I was here, in October of 2016, I took a seemingly innocuous tumble over a root that resulted in an avulsion fracture of the cuboid bone in my foot. I’m rather klutzy, prone to walking into walls at my own house, so tripping while trail running was nothing new. Until this episode, the most severe injury from one of those tumbles was a badly scraped shoulder (note to self #2 -don’t stumble while running down a mountain).

That injury capped off what had been a horrendous couple of years of running. Early in 2014, work stress triggered a severe flare of my autoimmune condition-Hashimoto’s thyroiditis-that would take over two years and multiple doctors to corral. By the second half of 2016, I was still a llooonnnggg way from my former athletic self, but was healthier than I’d been in nearly three years and was incredibly excited about regaining fitness in 2017. The broken foot tampered my expectations, but having recovered from a different broken bone in the same foot 14 years before, I wasn’t too concerned about long-term effects. I figured this was just one more setback in a long line of set backs, not knowing that another setback-a much bigger one-was waiting just around the corner.

I wasn’t yet out of the boot when I noticed a mysterious and significant increase in fatigue. I’d started a new job in November, one that looked to be a great mix of work that I love and not TOO much responsibility (small team, small budget). I’d not had good luck the past few years finding a balance of work that I love, but that didn’t adversely impact a tenuous recovery from the Hashi’s flare, and I thought I’d hit the jackpot. As the months went by, the fatigue worsened and I got sick frequently which was highly unusual. It was clear something was up, but my doc had a difficult time pinpointing the cause. By May I was barely functioning outside of work, running very little (if at all), and losing touch with most of my friends. I used  98% of my daily (and greatly reduced) energy reserves to get through the work day.

When I left for Wilder late that month, I was in a pretty dark place. I doubted that I would ever be well again, that I would be able to be present in my relationships, that I could do meaningful work, train and race as I wanted, essentially live life on my own terms. It became quite clear that if I was going to crawl out of this massive hole I’d fallen in, I needed to make significant changes. M encouraged me to leave my job, as even if we couldn’t figure out the cause of the latest issues, removing a big item from my to-do list would have to help. I resisted taking such a big step, but Wilder created enough space in my head that I was able to see that he was right. Regaining my health was clearly going to take sacrifices, sacrifices I really didn’t want to make. It felt like a crossroad – do I continue with the status quo even though clearly nothing is changing, or do I make some bold changes with the goal of restoring my health and living the life I envision for myself? It sounds dramatic, but those were the stakes. By early June, I was a shell of my former self, in every way.

As I ran through the woods earlier this week, all of this was racing through my brain…what has transpired since the day of the fall, how nine months later, I’m as hopeful as I was then about the future. I’m on week four of what I’m calling a sabbatical, having left my job at the end of June. I don’t know how long this time off will be, but I do know that I won’t make plans for what’s next professionally until my health is restored, whatever form that ends up taking. I’ll never know if the transition last November was too much too soon, but I won’t risk making that mistake twice. Hopefully the time away won’t be more than a few months, but time will tell. I’m grateful that we’re in a place where I can take this break. Having spent the last several years working in public health, I’m acutely aware of what a privilege this is. I have a few other “conditions of satisfaction”, as we called them at Wilder, for this time off, but the most important one is getting well. It’s been over four years that I’ve lived in a body that is unfamiliar, one that has been pushed to the brink more times than I can count (not by choice), that hasn’t been honored and respected in ways it needed to be. I can be a bit deaf when it comes to taking care of myself, but I’m finally listening.

In the backdrop of my health issues sits an incredibly skilled physician. Many people caught in the vortex of autoimmunity spend years searching for an accurate diagnosis, and then in some cases a few more years searching for a physician skilled in navigating these conditions. I was two years into this most recent flare before I found my current doc. The previous one was unconcerned with an unexplainable 20 lb weight gain (20 lbs I have yet to lose), crushing fatigue and exercise intolerance (how is exercise intolerance in someone who runs marathons for fun not concerning??). He also treated only the thyroid condition, with no regard for what caused the autoimmunity, which is substandard care these days. I drive 75 minutes one-way to see my current doc. She is a Hashi’s patient herself, which means I don’t spend an obnoxious amount of time describing seemingly vague symptoms. And as a functional medicine practitioner, she’s invested in locating the root cause of a misbehaving immune system, outside of treating the malfunctioning thyroid. While my most recent issues don’t seem to be rooted in the autoimmune condition, she has been relentless in trying to identify the cause. This means I don’t have to spend tons of energy advocating for myself, trying to persuade her that something isn’t right. She’s the first doc I’ve had where I haven’t had to do that. I can’t articulate what a relief that is.

My insurance covered the great majority of the tests, including upwards of $7k in blood work. Outside of my copay, insurance paid for every office visit. I paid for one hormone test out-of-pocket. In the context of the current healthcare debate, I can’t comprehend how anyone who’s benefited from the best of our healthcare system can vote for any legislation that would deny even one American access to care. I don’t care what the trade off is. I researched extensively to identify best practices for my condition, and to identify what type of practitioner would be able to help. I drive 80+ miles one-way to her office. So many people don’t have that capability, whether it be access to a computer and internet, time to dive deep into research, an educational background that provides skills to sort through that research, reliable transportation, a VERY supportive spouse/partner, and/or a schedule flexible enough for appointments every-other-month and regular blood draws . My recovery is bathed in privilege, and that infuriates me for every patient who doesn’t benefit from such advantages. Living with chronic illness is challenging enough, especially an illness as misunderstood an autoimmune condition, without the added layer of having to advocate extensively for appropriate care, the need for adequate insurance to cover such care, and the skills/resources to access good care. It shouldn’t be that hard. We can do better. We must do better.

The current debate in national politics fills me with great despair because people’s lives are on the line. It is not hyperbole to say that people will die if much of what the Republicans are proposing comes to pass. Those of us who “have” bear responsibility to those that “have not”. Full stop. If that means I’m partisan, political, a snowflake, so be it. It makes me itchy that I benefit from the best of our system, while so many people sit outside of it, and while certain politicians are doing everything they can to ensure even more people are excluded. From healthcare. What have we become?

ACA, Obesity, Uncategorized

Obesity and the ACA

Early in my career, I had the privilege of working in cardiac rehabilitation. I was an exercise physiologist, so much of my job included writing exercise prescriptions, teaching education classes (mostly on modifying lifestyle behaviors such as diet, stress and smoking) and individually counseling patients living with heart disease. In all of those years, what I didn’t do was ask any of my patients, not one of them, about the environment in which they lived. I didn’t ask about how often they shopped for groceries, or whether or not their neighborhood was safe. I didn’t ask if their local grocery had fresh fruits and vegetables, and whether or not they could afford them. I didn’t ask if they could afford all of the medications prescribed to them by their physician. The care I provided followed the guidelines of what I was taught, what we all were taught: exercise at least 30 minutes most days of the week, eat at least five servings of fruits and vegetables per day, reduce stress, quit smoking, take meds. Period.

Throughout my undergraduate and graduate education, not once did we discuss the influence of the environments in which we live on health. Nor did we discuss how to counsel and advise patients in the context of their home environment. Telling someone to go for a walk everyday when they live in a neighborhood with poorly maintained sidewalks, or in one that is plagued by crime, is absurd. I can only wonder about how many of my patients went home feeling despair or defeat because they did not know how to follow our recommendations due to their circumstances.

Over the past 15-20 years, research has taught us a lot about what causes obesity. At a societal level (so not in the context of your neighbor who enjoys too many cheeseburgers), our personal choices have very little to do with what is making us, the collective us, fat and sick. But first, a few facts (all stats from CDC):

  • 36.5% of Americans are obese
  • Non-hispanic blacks have the highest age-adjusted rates of obesity at 48.1%, followed by Hispanics at 42.5% and non-Hispanic Asians at 11.7%
  • Obesity rates are higher among middle age adults age 40-59 years (40.2%) and older adults age 60 and over (37.0%) than among younger adults age 20–39 (32.3%)
  • Childhood obesity has more than doubled in children and quadrupled in adolescents in the past 30 years.
  • The percentage of children aged 6–11 years in the United States who were obese increased from 7% in 1980 to nearly 18% in 2012. Similarly, the percentage of adolescents aged 12–19 years who were obese increased from 5% to nearly 21% over the same period.
  • In 2012, more than one third of children and adolescents were overweight or obese.

Americans are fat. And getting fatter. But why? The social determinants of health (SDOH) tell us much about the insidious forces contributing to this epidemic. Social determinants of health are conditions in the places where people live, learn, work, and play that affect a wide range of health risks and outcomes.

In looking at the pyramid above, the education I provided my patients was at the tippy-top. My advice, no matter how good it was, was not going to have much impact on the factors that contributed to their illness. Similarly, a physician telling their patient to lose 30 lbs is not likely to have much of an impact, if any, on that patient’s health status. That’s not to say that those conversations shouldn’t happen, because they should, but that can’t be our only approach.

The obesity epidemic in the United States will continue unchecked as long as our solutions continue focusing at the top of the pyramid. So, what do policy, systems and environmental approaches to reduce obesity look like? If educating people isn’t the solution, what is? This list is by no means exhaustive, but provides some context:

  • Interventions that address poverty – poor communities bear the enormous costs of disease (including obesity) at disproportional rates. Programs that stabilize those living in poverty and that support people as they transition to a more stable financial environment can have significant impacts on health.
  • Interventions that address housing – many people living in poverty reside in structures that are unsafe and unhealthy, riddled with mold and poor air quality. Working with city governments to improve codes and code enforcement, and working with landlords to improve living conditions can go a long way to improve conditions such as asthma. But wait a minute, I thought we were talking about obesity? We are…would you spend your free time being physically active if you had uncontrolled asthma due to your mold-ridden home?
  • Interventions that address inequities – despite what you might hear on certain news stations, all Americans aren’t equal. Great health disparities exist, and often they fall along racial and gender lines, and around how much money you make, where you live. Did you know there are communities in this country where living 10 miles at opposite ends of the same road means a ten-year difference in life expectancy? In some communities, the disparities between neighborhoods can be as great as 25 years. In many places, your zip code has more of an influence on your health status than any other variable.
  • Interventions that address community environments: Improving the built environment to encourage walking/running and biking. This can include building/improving sidewalks, adding bike lanes, improving safety and addressing play deserts. Increasing access to healthy, affordable foods by expanding farmers market initiatives, corner store initiatives, addressing food deserts, improving the nutritional value of food in schools, and examining/changing national food policies to incentivize healthy, whole foods.

So what does the Affordable Care Act (ACA) have to do with all of this? While many people are familiar with some of the hallmarks of the ACA such as free preventive care, the ability to keep children on a parent’s policy until age 26, and prohibiting discrimination due to gender or pre-existing conditions, what you might not know is that it also requires not-for-profit hospitals to conduct a community health needs assessment every three years. In addition to the needs assessments, hospitals must also develop a community health improvement plan and report progress annually. All of this is required for a hospital to maintain its non-profit status.

To develop the needs assessment, most hospitals utilize both an extensive review of primary and secondary data (this can include community surveys, hospital statistics such as emergency department utilization rates, heat maps by diagnosis, etc), in addition to more qualitative approaches such as focus groups and stakeholder meetings. In my community, the two non-profit hospitals have gone one step further, in that they’ve partnered with each other, the local health department and a community service organization to develop one needs assessment and implementation plan for the entire community. Nearly 50 organizations participated in the development of our community’s assessment and implementation plan.

In addition to the assessment and implementation plan, non-profit hospitals must divert a percentage of their funds for “community benefit”. In the past, much of these community benefit funds went to uncompensated care, meaning the funds the hospital spent to care for patients who were uninsured. As uncompensated care went down with more people being covered by insurance, the expectation is that these dollars would begin to flow out into the community to address needs identified in the assessment and to fund portions of the implementation plan.

Back to obesity…not surprisingly, many communities are identifying obesity as one of their top health concerns. Not only is it a prevalent, stubborn issue, but it is a co-factor in so many other conditions such as heart disease, diabetes, certain types of cancer, depression, etc. Many people believe that if we can crack the obesity nut, we will go a long way to solving some of the other persistent (and expensive) health issues plaguing Americans. The ACA created a framework for community partnership beyond anything that existed previously. Many hospitals are taking their assessments/plans seriously, dedicating significant staff time and funds to the efforts.

When these teams go looking for best practices to address the obesity epidemic, they immediately bump into the social determinants of health. Within the context of the social determinants, when they go back through their own primary data – heat maps of particular diagnoses such as asthma for example – they can begin to see very real patterns emerging in the community. As hospitals work to improve patient outcomes and reduce re-admissions (also an expectation of the ACA), these new approaches to care are vital, and great for the patient. The ACA was the foundation for all of this progress. No longer are hospitals only responsible for the patients that walk through their doors, they are responsible for the health of the community, just as health departments have been for decades. Only by looking for solutions outside hospital walls will they move the needle on such complex problems. In this situation, there are no losers.

In the doomsday scenario discussed by some Republicans, meaning a complete repeal without a replacement of the ACA, not only will many Americans have a reduction in coverage or lose their insurance altogether, communities will lose a transformative platform for change in how we approach community health. These new collaborations are in their very early stages and we’re several years away from knowing how powerful they might be. One thing is for certain though, communities will not solve complex health problems such as obesity by working in isolation, and unfortunately organizations often need a nudge to do the right thing. The ACA provided a powerful platform for improving community health and addressing obesity. On the hierarchy of bad things that would happen with a repeal, this might not feel as urgent, but for our vulnerable communities this is one of the better opportunities we have at making a real dent in the disparities that affect their health every single day.

People can’t make healthy choices when they live in communities that aren’t safe, that lack access to fresh, healthy, affordable foods, that lack safe places for walking, biking and other types of physical activity, when they reside in homes that are contaminated and when they face the multitude of challenges that accompany being poor in this country. Offering “personal responsibility” as a solution is irresponsible. The price we pay for poor health is obscene. Not only is it the  direct cost in medical bills, it is sick time at work, lost productivity, missed days at school. Until we recognize that solving these issues is going to take more than finger pointing, obesity rates and related health problems, will only increase. Gutting the ACA will add fuel to the fire.

Photo credit: Marty Barman