Chronic illness exposes health care gaps

RX pharmacy prescription bottle of pills on a pile of $100 dollar bills and a USA outline
Living with a chronic illness is not simply physical pain or fatigue; it is a constant negotiation with a health care system that commodifies care. Every doctor's appointment, prescription, and therapy session is a reminder of the overwhelming and taxing obstacles that must be navigated to stay alive.
These costs are not merely financial; they also impact time spent with family, peace of mind, and dignity. This battle is not only against illness, but also against a system that fails to recognize people first. We are human beings worthy of compassion and care, not merely a line in a profit ledger. Yet, in today's political climate, legislative proposals threaten access to essential programs for Medicare and Medicaid, posing even greater risk to vulnerable individuals. This is the grim reality for millions of Americans, and it begs an urgent question: When will our health care system start putting humanity over revenue?
I am living with Lupus, an autoimmune disease that causes fatigue, joint pain, and organ failure. I have faced unpredictable flare-ups since my diagnosis in 2002. These flare-ups require weekly doctor visits, medications, and sometimes hospitalizations. Even with insurance, out-of-pocket costs can run into the thousands annually, forcing me to make difficult choices:
Should I pay for my medications or my mortgage? Should I miss a doctor's appointment to afford groceries? These are not theoretical questions but real decisions that millions of people with chronic illnesses face daily. Medical debt, or personal debt incurred from unpaid medical bills, is a leading cause of bankruptcy in the United States. As many as 40% of U.S. adults, or about 100 million people, are currently in debt because of medical or dental bills.
Families with multiple disabilities face compounding expenses in the management of those disabilities, including specialized medical care, therapy, adaptive equipment, and educational support. My family was faced with this challenge as I struggled to manage my and my disabled child's health. This encumbrance is especially heavy for parents relying on Social Security benefits. The emotional toll of balancing these responsibilities often leads to heightened stress and financial insecurity, keeping families trapped in poverty.
My geographical location presents an additional barrier to receiving quality, timely, and equitable health care. The Centers for Disease Control and Prevention reported that rural residents are often sicker and die younger than individuals in urban communities. This is due to numerous factors, including access.
I live in a rural area where health care access is significantly limited. Patients in rural areas often travel long distances to seek specialized care, face poorly resourced local facilities, and experience delayed care. According to the Bowen Center, Indiana has had multiple hospital closures, with 52 rural hospitals remaining as of 2024, and 25% of open hospitals have experienced service reductions.
These systemic issues are further compounded by our health care system. Pharmaceutical companies continue to raise the cost of life-saving medications with little to no regulation. Insurance companies often refuse to cover newer, more effective treatments, forcing patients to navigate bureaucratic red tape or accept suboptimal alternatives.
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Public assistance programs, while helpful, are often insufficient, placing a financial burden on patients. Although Indiana has instituted various measures to solve the overwhelming health care costs, the emotional toll of these financial challenges cannot be overstated.
So, what is to be done? First, lawmakers must address the underlying drivers of high health care spending. This involves enacting tougher rules on drug prices, mandating transparency from health providers regarding pricing, and expanding Medicare and Medicaid coverage for people with chronic diseases and disabilities – not creating more barriers.
Second, insurers should streamline their procedures so patients have access to necessary treatments without constant denials and delays. Patients and providers will benefit from streamlined processes that remove administrative layers, allowing providers to focus on delivering quality health care.
Additionally, rural health care access should be addressed. Removing telehealth restrictions and incentivizing the physician workforce in rural communities would go a long way in addressing the need for health care access in these deserts.
Chronic illnesses deeply impact all of our communities. They do not discriminate based on income, and neither should our health care policies. As we move forward, it is crucial that we not only address the physical needs of those living with chronic illnesses, but also alleviate the economic burdens that prevent them from living productive and dignified lives.
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