Allan Cole and Elizabeth Gaucher are friends from their undergraduate years at Davidson College. They reconnected around Allan’s book of essays, A Spiritual Life:Perspectives from Poets, Prophets, and Preachers (2011). In this blog post, they share thoughts about the political aspects of living with a chronic disease.
+++
Elizabeth: Everyone knows that healthcare is expensive, but even just that word, “expensive,” can be as confusing as the healthcare system itself.
I want to talk about money, both the plain old-fashioned nature of its necessity as well as the systems around being sick and where those systems intersect with dollars.
Allan, you know I am about to talk about two of the storied three or four things everyone says you shouldn’t talk about: money and politics. (You know I’m up for discussing sex and religion, so why not push the envelope?) I’ve been living with a multiple sclerosis diagnosis for over 20 years. You’re living with Parkinson’s. I think we’re qualified for this.
Allan: I wish we weren’t! But let’s talk.
Elizabeth: One of the first things that really blew my mind was how holding on to my private health insurance was the only way I could maintain consistency of care. If I had even a one-day gap in my coverage, I would be subject to having my new policy reviewed for a pre-existing condition, which would mean my insurer could write the policy to exclude coverage for MS. That was the moment when I realized how precarious the whole thing was.
Allan: Before my Parkinson’s disease diagnosis in the fall of 2016, when I was 48 years old, I never understood the political nature of illness, or of health care, or of trying to maintain a high quality of life in the midst of a body that grows increasingly compromised. Not really. Like many people who enjoy both health and economic privilege, my political energy hovered mostly over the economy, education, and issues of egregious injustice and inequity. Health care was a distant fourth or fifth down the priority list. But when disease became personal, I recognized how widespread chronic illness is. I learned how many people it affects. I understood its inherently political nature.
Elizabeth: I like how you said that. Sometimes people say about this issue and many others, “Oh, don’t make it political.” But we are not “making” it anything. It is political by the very nature of its many dynamics. Take my comments about having my illness written out of coverage. As it is entitled to do, the insurance industry has lobbyists at every level. It has an agenda based on its best interests. That agenda is not mine, and so I think about how to have my voice heard by my representatives. And all of the financial issues can be overwhelming.
Allan: Here’s the reality.
If I lacked health insurance that covers most of the cost of my medicines, this is what I would pay out of pocket: Neupro $839; Azilect $572; Rytary $1376—for a total of $2,787 per month and $33,444 per year.
Unfortunately, many people with Parkinson’s or other chronic diseases have no health insurance, usually because they can no longer work and afford the premiums. Not only this, but approval for Social Security Disability Insurance (SSDI) requires time and an onerous process. Initial applications may take six months or longer to consider, and only 36% receive initial approval.[1]
Only about one in three!
It gets worse.
The approximately two thirds denied SSDI enter a series of grueling appeal processes. Currently, 63% in all ultimately receive benefits, but the process may take two or three years, and, crucially, Medicare benefits start 24 months after SSDI begins. Until then, one who cannot work must nevertheless pay out of pocket for medicines and other health care needs.
Elizabeth: Wow.
Allan: I already said it but allow me to say it again. For me, that would total well over $33,000 a year. If I have no private insurance, I am paying $66,000-$99,000 while I wait to find out if I can get SSDI. Keep in mind that scenario, and remember, I also have no income. And if I do finally qualify, I’m still out thousands while I wait for Medicare to kick in.
Elizabeth: Honestly, I feel like my life has become a game of Frogger, that video game from when we were kids, where you try to move through a dangerous series of situations one leap at a time to get to a safe place. Since my diagnosis, I’ve been very fortunate but simultaneously very circumspect about my every employment decision. I have to have a full-time job with benefits or be on my spouse’s insurance, which puts him under tremendous pressure. It’s just another layer of family responsibility, but a very stressful one.
In between jobs once we had to pay COBRA premiums to keep me continuously covered. It was very expensive and also very scary. My meds cost around $3,000 per month with no private insurance. It’s really striking to me that you and I both require medicine that adds up to some people’s annual income.
Allan: You and I are not alone. Approximately 1 million Americans live with Parkinson’s disease, with 60,000 new cases diagnosed annually.[2] Nearly half of all Americans (133 million people) live with at least one chronic illness, and the rates are increasing. Chronic diseases include things like cancer, diabetes, hypertension, stroke, heart disease, respiratory diseases, and arthritis, among others.[3] If you are reading this, you might not be ill now, but if you live long enough, odds are that you will be.
We’re back to the claim that illness is political because everyone needs access to affordable health care, including medicines; and as the World Health Organization recognizes, access to care is a basic human right.[4]
Consider that illness often leads to financial hardships for those living in the United States. An estimated 530,000 families file for bankruptcy annually, and 67% cite illness and the cost of care as primary reasons.[5] Currently, 28 million Americans risk financial catastrophe because they have no health insurance.[6]
Of course, private insurance is a good option for those who can work and pay for it; though some say that most policies do not actually provide adequate coverage in the case of an extended illness.[7] We also need less expensive options for those who lack private insurance or who risk losing it when their illness prevents them from working.
Elizabeth: Right! All of this feels like further evidence as to why living with a chronic illness is necessarily political.
Allan: It really is. But here’s the catch, it need not be necessarily partisan. Good people may disagree on how best to provide lower cost health care to all people, whether through a single payer system, private insurance, a hybrid, or other model. But we can agree to commit to learning about the options and to debating their merits civilly as we embrace a basic human right for all people and recognize the common good.
Elizabeth: This is a timely conversation for people to have, as opposed to allowing their discomfort to keep them silent.
Allan: I could not agree more. For 133 million of us, and more, a lot is a stake.
__________
[1] https://www.ssdrc.com/
[2] https://parkinsonsnewstoday.com/parkinsons-disease-statistics/
[3] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5876976/
[4] https://www.who.int/mediacentre/news/statements/fundamental-human-right/en/
[5] https://www.cnbc.com/2019/02/11/this-is-the-real-reason-most-americans-file-for-bankruptcy.html
[6] https://www.thebalance.com/universal-health-care-4156211
[7] https://www.cnbc.com/2019/02/11/this-is-the-real-reason-most-americans-file-for-bankruptcy.html
Photo by Louis Velazquez on Unsplash
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, professor of psychiatry in the Dell Medical School. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality. Currently, he is writing a book on counseling people with Parkinson’s disease, which will be published by Oxford University Press. Follow him on Twitter @PDWise
Elizabeth Gaucher earned a Master of Fine Arts in Creative Writing from West Virginia Wesleyan College with a concentration in Creative Nonfiction. She is the founder of and editor-in-chief for the online literary magazine, Longridge Review. Follow her on Twitter @ElizGaucher