D-Blog Week 2017: The Cost of Chronic Illness

Quick note: This week (May 15-19, 2017), GraceMark Musings is participating in Diabetes Blog Week, adding our voice to the chorus of diabetes bloggers, caregivers, and friends of the DOC (diabetes online community) who are uniting to share their unique reflections on certain topics prevalent in life with diabetes. Thank you to Karen Graffeo at Bitter-Sweet for creating this opportunity--congratulations on the 8th year of D-Blog Week!

 

Healthcare is a heavily politicized topic in the US right now, so I want to start off by saying that I will address this as a purely human issue, not a partisan one. I aim to present the situation as-is, and certainly don't purport to have the answers on how to fix a very broken and very complicated system. I can only give my experiences, observations, and the facts as they are today. 

The thing about a chronic illness is that it doesn't go away. "Chronic" means constant companion, and a needy one at that. There is no such thing as skipping a day of medication, let alone a dose, and being okay. Diabetes is always keeping score, in the short-term and the long-term. I frequently mention "living well" with diabetes. Living well with diabetes means a lot of different things to a lot of different people, but the foundation for living well with diabetes is always tending to basic care and management. Insulin and delivery, blood glucose monitoring, education, for starters. We cannot live, let alone thrive, without affordable access to insulin and the accompanying tools and medications. This has to happen today, to prevent tragedy tomorrow. Period. 

Short term costs are vitally important to address because investing in a high standard of care now is the best insurance we have, as individuals and as a society, against major costs that will surely crop up in the long-term without a focus on taking care of business now. When I say "major costs", I mean two things:

1. The financial expense of treatments for complications of diabetes, such as dialysis and amputation. 

2. The human cost of having to experience a diminished quality of life and early death due to largely preventable circumstances. 

When I think about why things are the way they are, in relation to the cost of chronic illness care, a thought that comes up as a major contributing factor to the lack of urgency and compassion around this very serious issue is that it simply is not personal for people who are in the position to affect change. I am truly glad for those people that neither themselves nor their loved ones have experience with the devastation and concern that come with a life-long condition with expensive care. I would never, ever wish this on someone else. What I imagine to be the truth is that if you or someone you care about have not experienced the white knuckle, teeth grinding stress of figuring out how to pay for the cost of staying alive, you cannot understand. Perhaps it is easy to say or imply that people with chronic conditions deserve their troubles when you stand so far away from people for whom this is a daily reality, but just because it is easy to say does not make it right or true (because it is neither loving your neighbor nor accurate).

I have to imagine that these people are so fortunate in their health and the health of their loved ones that they cannot comprehend what it is like to be on the other side of the street, because thinking that people in a position of power to be empathetic, share compassion, become educated, and affect change are choosing to turn away for self-serving reasons would simply break my heart. 

I spend a great deal of time thinking about how much it costs for me to be able to live with type 1 diabetes and how I am going to cover those costs. Doctors talk about how diabetes is a "manageable" condition, and even without regard to the extreme load that word carries when thinking about a disease that requires 24/7 attention and treatment with a volatile medication, I wonder how often the cost of management is taken into consideration. Even if you have incredible insurance coverage, the amount of money spent on the necessary medication, supplies, and medical care quickly becomes larger than life. I feel physically ill thinking about what happens for people who don't have any insurance coverage at all and have this burden placed on their shoulders. It worries me to think about how I will be able to obtain, maintain, and afford health coverage going forward as an adult, and what that will mean for my family and my future.

The facts are that:

  • There is no veritable transparency in true cost of goods or services in healthcare, meaning there is no ability to cost compare or negotiate for the patient.
  • Insulin prices continue to skyrocket.
  • Out of pocket costs are prohibitive.
  • Insurance plans are moving towards what they call "consumer-driven care", which is slick packaging for covering less and pushing more cost-sharing onto the consumer, for the same or higher premium cost.

So what can we do? That's a question I ask myself often. I will be honest and say I do not know what the answer is for this serious conundrum. I am grateful to live in a country where innovation drives treatment and would not ever want to see that change. What gives me pause is just that innovation is only as good as the access patients have to new and improved therapies and technologies.

The future of healthcare exists where innovation and access meet. Let's find a way to make that happen, shall we?
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