There is, I hope, a thesis in my work: we may encounter many defeats, but we must not be defeated. That sounds goody-two-shoes, I know, but I believe that a diamond is the result of extreme pressure and time. […] I am saying that we may encounter many defeats—maybe it’s imperative that we encounter the defeats—but we are much stronger than we appear to be and maybe much better than we allow ourselves to be. Human beings are more alike than unalike.
– Maya Angelou, from The Art of Fiction No. 119, the Paris Review
Earlier this week, the writer, teacher, composer, filmmaker and exceptional human being Maya Angelou died at the age of 86. I remember watching TV during the 1993 Presidential Inauguration, spellbound as she recited “On the Pulse of Morning.” I was only twelve years old, but I knew I was witnessing something awesome, in the sense of breathtakingly impressive. I now grieve her death, but I also recognize that she has left behind an extraordinary legacy, a legacy that lives on in her creative works and the influence she has had on multiple generations, myself included.
But it isn’t Maya Angelou’s death that makes my heart heavy. It’s the news that two women from the online arthritis community have died, one from heart failure, and the other from an untreatable infection. I want to say that I didn’t know either of them personally, so my grief isn’t one of personal loss, and I do not want to encroach on anyone else’s sorrow. Yet I can’t help but feel the rage and sadness begin to boil up inside of me: these deaths should be preventable. Autoimmune disease shouldn’t have shaved 60 or even 16 years off of these young women’s lives. Yet too many doctors fail to identify early autoimmune disease, and then after diagnosis they fail to “treat to target,” insisting that if joints aren’t visibly inflamed, then everything must be OK, dismissing patients as hypochondriacs when they report symptoms (like fatigue, weight loss/gain, and chest pain) that point to the violent damage that autoimmune disease is doing to internal organs and the vascular system.
A lot of people assume medical debt is something that happens to “other” (read: poor, unhealthy) people. But pretty much everyone is at risk, including “comfortable” people like me with “good” health insurance. As of January 1, two of the prescription medications that helped put my autoimmune disease into remission have nearly doubled in price (from $75 to $125 and from $135 to $190). I now have to decide if I should devote more of my budget prescriptions each month, if I should reduce my dosage (and run the risk of having symptoms come back), if I should try to find a lower priced medicine (which could mean months of trial and error and a possible flare up), if I should try to apply for patient assistance, or if I should go into debt to pay for my medical expenses.
Infographic courtesy of http://www.nationaldebtrelief.com/
The link above goes to a press release about a study by the Arthritis Research UK Centre for Genetics and Genomics at The University of Manchester. This kind of work is really important, and I suspect we will see major changes in the diagnosis and categorization of autoimmune and autoinflammatory diseases in the next decade. But it brings up some interesting ethical dilemmas. For example, knowing that there’s no cure, would you live your life differently if you were told your had a “RA gene” and that a viral or bacterial infection could bring on full-blown disease?
Abstract and full paper here.
“I tramp a perpetual journey.” ― Walt Whitman, Song of Myself
The expected first entry after a long hiatus from blogging is usually an apology from the author. But you know what? I’m not here to apologize. In the past year, I took a full time administrative job, found a biologic medication that works for me, convinced my insurance company to pay for said biologic, served as a PCORI reviewer (twice), started dancing again, and completed my PhD in American Studies with a dissertation on memory, girlhood, and American literature for children and young adults. I’ll save the full story of how all I accomplished all that, while juggling the limitations and crises that come with chronic illness, for (multiple) upcoming posts.
As someone who is now officially in “remission” (which still boggles my mind), I sometimes forget how sick I was, and for how long. This blog forces me to remember, to keep the memories from fading into hazy approximation. My memories of the years I spent suffering (and the chance that I might suffer that way again) power my commitment to advocacy and scholarship on chronic illness and disability. There’s still so much work to be done, so many conversations to be had: about pain, about access to medications and healthcare, about how chronic illnesses are perceived in contemporary culture, and the impact this has on the lives of those who live with those illnesses and the medical research that might treat, or even cure them. I have a lot more to say, and I’m going to say it here.
I’m scheduled to meet with US Senator Johnny Isakson (R-GA) next week to discuss specialty tier medications and how medicare and commercial insurance policies are preventing patients from accessing life-saving medications. Anyone else negatively affected by specialty tier pricing? I’d love to share your stories as well as mine.