Winter in the Woods, Summer in the City

Melissa GHLF Policy InternshipGuest post by Melissa MacDonald, Patient Advocacy & Policy Fellow at the Global Healthy Living Foundation, CreakyJoints parent organization

In a month, I will begin my fourth and final year at picturesque Middlebury College, nestled quietly but proudly in rural Vermont. Small in size, but big in reach, my advisors at the college helped connect me with the also small in size (and also big in reach) Global Healthy Living Foundation (GHLF) during my junior year. What followed was the creation of an opportunity unlike any other I have encountered; an experience that I will attempt to succinctly explain.

During “J-Term”, a four-week long semester at Middlebury that eases the stresses of the most dreaded month on the calendar, January (I shiver at the word), I accompanied the Chief Medical Director of GHLF, Dr. Jonathan Krant, at the rural Adirondack Medical Center clinic, where he practices rheumatology. For four weeks, I was exposed to the realities of treating inflammatory diseases: difficult diagnosis’s, failed therapies, lengthy prior authorization forms, specialty tiered medicines, and most of all, the taxing toll these diseases take on a peoples’ quality of life.

I touched the joints and felt their heat. I saw patients cringe at handshakes, struggle to tie their shoes, and even simply move. I noticed how much compassion could mean to someone in pain, or just a comforting touch (on somewhere it didn’t hurt, of course). But it wasn’t all pain and no gain; there were patients who were doing exceedingly well on their new therapies, noting that they regained control of their lives and could once again perform the simple tasks the majority of people take for granted every day (like typing this very sentence). Unfortunately, there was another side to this coin. I also had to watch as patients tried to decipher and tackle the barriers that were restricting their access to the medicines that could allow them to once again fully function. But from what I knew so far, this was just how it works; some people have a harder time getting treatment than other people, and that’s that. Then I went to Washington D.C.

I drove my haggard Jeep Wrangler the 482 miles from the mountains of Middlebury, VT to the monuments of Washington, D.C. at the end of May. I arrived with my head full of patients I had met in the Adirondacks, and I began learning the winding ways of health policy and patient advocacy (under the knowledgeable eyes of my supervisor, Steve Marmaras). I read the legislative policies that govern the dispensing of the medicines I had watched being prescribed, and I analyzed the bills being proposed to change them. I began to understand that these barriers are not “inevitable,” but “unethical.” I swallowed the hard pill that patient safety is not always put ahead of profits. I realized that “how it works” doesn’t equate to “how it should work.” Thankfully, I also saw that GHLF, among many other patient groups representing a full spread of diseases and chronic illnesses, are working to keep legislators accountable, making sure the patient voice is heard loud and clear.

One of the distinct examples of this can be found in GHLF’s work on distinguishable naming for biosimilars. After submitting a letter to President Obama, signed by 27 patients from over 15 states, urging him to support unique names for biosimilars, Steve and I hand-delivered a copy of the letter to each and every member of Congress who had a patient constituent sign on to our letter. That equated to 34 Senators and 26 Representatives. We went to 60 congressional offices in one day—I wish I had worn a pedometer, because I’m sure that skipping the gym that evening was more than excusable. And while visiting that many offices might sound tedious, these are not your run of the mill workplaces. Most of them offer up a treat that is headquartered in their state, like a fridge stocked with Dr. Pepper or an unlimited supply of movie theatre popcorn. Maybe skipping the gym wasn’t as excusable as I thought…

As I finish my final year at Middlebury, where I’ve been taking a truly liberal arts approach to learning (majoring in Theatre while completing my pre-med requirements), and in a few years will probably be in medical school on my way to becoming a primary care physician in rural New England, I’ll be fortunate to have an understanding of the system in which my practice will be running. I won’t accept the barriers that my patients have to tackle, and I’ve begun to learn how I can work to effectively change the dangerous policies that are infecting our health care.

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