HAVE MONEY OR YOU GO SUFFER

A light look into the financial implications of having a chronic illness.

Photo by Annie Spratt on Unsplash

Sickle cell disease is challenging in many ways, but one aspect often overlooked, especially by first-time parents but applicable to many, is the staggering cost of quality healthcare in numerous parts of the world. Medical debt can be a silent killer, particularly for individuals of modest means, casting a shadow over their quality of life. Moreover, the mental toll it inflicts on many, even for those from stable financial backgrounds.

I found myself wrestling with this reality firsthand during a recent hospitalization for a sickle cell crisis, just days before the Easter weekend. While my primary concern was recovering, the length of my stay brought a sinking feeling that lingered in the dark. A feeling I have had countless times over years. The daily updates of my accumulating hospital bill, relayed to a family member, served as a stark reminder of the ongoing struggle to manage my health comfortably without sacrificing other aspects of my life. I am fortunate to have family support that has shouldered the burden of these bills over the years, largely out of pocket, but I have reached an age that I feel the necessary responsibility to start shouldering these burdens as well.

Yet, it's sobering to realize that without this support system, navigating the world of healthcare would be exponentially more daunting. I can't help but wonder about families less fortunate than mine and how they cope with the challenges of sickle cell disease. How does the burden of healthcare costs affect their mental and physical well-being? How many couples have been forced to make heartbreaking decisions about parenthood due to the financial strain of managing a chronic illness? Raising children is already expensive in today's world; adding a chronic disease or disability to the equation elevates the challenge to a whole new level. Yet, perhaps the greatest cost isn't merely financial but the hidden toll it takes on mental health and relationships.

As I researched the issue a little more to prepared for this post, recent research enlightened me on the staggering lifetime medical costs attributable to sickle cell disease among nonelderly individuals in the United States. According to a study by Kate M. Johnson et al., the estimated lifetime burden of total medical costs attributable to sickle cell disease is a staggering $1.7 million, with patients incurring an additional $44,000 in out-of-pocket costs. These figures underscore the immense financial strain faced by individuals and families affected by this disease, highlighting the urgent need for accessible healthcare and support systems. Myself included considered how much I was billed out of pocket when living there for school. The experience truly haunted me in a lot of ways and has shaped a lot of the decisions I make now on my lifestyle, location I plan to live in the future and even how I navigate my relationships with Family, friends, and romantic partners. All these decisions are crucial but need to be taken with both understanding of one’s personal situation and leap of faith personally. An interesting minefield don’t you think?

Despite these challenges, I feel there is hope. By rallying communities together, we can provide vital support to those less fortunate, addressing the daunting challenges of chronic illnesses like sickle cell disease. Hopefully this newsletter serves as part of my contribution, sharing relevant stories and insights to raise awareness and foster meaningful dialogue on this critical issue. Only time will tell if these efforts make a difference, but I am committed to doing my part.

For those interested in exploring the full article by Kate M. Johnson et al., I've provided a link below. It's a valuable resource for anyone curious about the economic impact of sickle cell disease and the challenges faced by those living with it.

Link to the full article