Chronic Illnesses and the Heavy Weight of Financial Burden: The Hidden Crisis

In a world where healthcare costs are skyrocketing, the devastating impact of chronic diseases goes far beyond physical ailments. For many, like 26-year-old Karen Mancera, a sudden loss of financial support can plunge them into despair. In July, Karen found herself in a panic after receiving news that she would be dropped from a patient assistance program providing her with free infusions of Remicade, a crucial medication for managing her ulcerative colitis — a chronic inflammatory bowel disease that can create extremely painful and debilitating symptoms.

Karen claims she never received the required paperwork from Johnson & Johnson, the drug manufacturer, which has made her treatment precariously contingent on her ability to navigate complex insurance systems. With her private insurance failing to cover Remicade, the looming cost of thousands of dollars out-of-pocket felt daunting for the doctoral student whose annual income is under $50,000. In desperation, she resorted to less effective steroid treatments, leaving her feeling powerless.

Karen's predicament is not an isolated one. An estimated 129 million Americans are affected by chronic diseases, and the financial strain of long-term treatment can be overwhelming. Women, in particular, face heightened risks, and many patients, like Shannon Hart, a 59-year-old with rheumatoid arthritis, cite financial concerns as their greatest source of fear. 'It’s the financial part of it that scares me,' she shares.

Recent data from the Kaiser Family Foundation reveals that nearly 30% of adults have refrained from taking their medications as prescribed due to cost. Common coping strategies include cutting pills in half, skipping doses, or reallocating funds from necessities like housing and food, according to Dr. Seth A. Berkowitz from the University of North Carolina at Chapel Hill. Women and disabled individuals tend to experience this burden even more acutely, underlining the intersection between gender and health.

The Biden administration recently made headlines by initiating discussions with pharmaceutical companies to negotiate lower prices for ten of the most expensive medications. These prices shocked many, with medication such as Stelara costing over $13,000 a month and Imbruvica nearly $15,000 per month. Even those on Medicare are not immune to the financial woes; Shannon Hart, for example, has had to pay $1,600 monthly for Enbrel despite being enrolled in the program.

Chronic health issues can impede a person's ability to work, creating a vicious cycle where medical expenses soar and income dwindles. Dr. Berkowitz explains that this compounding financial pressure is a reality for around 40% of adults with at least two chronic conditions.

For many, the fear of future financial insecurity becomes palpable. A CVS Health employee facing layoffs reflects her anxiety, saying, 'It’s the future that scares the hell out of me.' With her health coverage expiring soon, she grapples with existential dread over mounting debt and the uncertainty of job prospects with adequate insurance.

Despite the overwhelming stress, many patients hesitate to discuss the issue of affordability with their healthcare providers. 'I don’t know if they would understand, or if they could do anything about it,' Karen explained. Experts like Dr. Stacie Dusetzina from Vanderbilt University point out how vital these conversations are, yet often overlooked.

Healthcare providers may find it challenging to immediately assess out-of-pocket costs, but they can still initiate discussions about affordability. Dr. Michael Steinman, a geriatrician, stresses the importance of addressing this issue: 'It has real impacts on people’s lives—either they’re going broke for the drug or they’re not taking it.'

Empowering patients to voice concerns can lead to alternative medication options, assistance programs, and prioritization of necessary prescriptions. Pharmacists can also be valuable resources for patients dreading the financial aspects of their treatments.

Chronic diseases not only affect health but can ensnare patients in a web of fiscal anxiety that hinders their quality of life. In times when healthcare costs are a national concern, those battling chronic conditions need support systems more than ever. Advocating for change and beginning open dialogues about financial hardships can pave the way toward more manageable solutions for patients like Karen and Shannon.