The phone rings at 2 a.m. The resident doctor on call that night is contacted to discuss a Latinx patient who presented with seizures. He had missed his medication for about a week. He had recently been laid off and lost insurance coverage. He couldn't afford to refill his eslicarbazepine acetate (Aptiom) prescription. This was a recurrent scenario in my training years.
Other similar stories involved Black and Latinx patients with multiple sclerosis on Medicaid, who came in with severe exacerbations and end-stage courses of their disease. The lapses in their vital therapy were related to the impact of social and economic determinants of health, including lack of transportation, underinsurance, and inadequate social support. Unfortunately, their medication co-pays were unaffordable. Their disease courses progressed rapidly to disability and total functional dependence; they were destined to become patients in a skilled nursing facility.
Such unjust outcomes are all-too common. They result from the rampant health inequities associated with exorbitant drug prices, lack of access, and a fragmented healthcare system that puts profits over patients. Vulnerable populations, including ethnic and racial minorities, bear the burden of these sky-high drug prices. Meanwhile, pharmaceutical companies are filling their coffers with trillions of dollars as millions of chronically ill people get even sicker.
U.S. prescription drug spending increased from $30 billion in 1980 to $335 billion in 2018, with especially significant increases in the 1990s, early 2000s, and 2013-2015. Per person, prescription drug spending increased from $140 in the 1980s to $1,025 in 2017. A complex array of factors contributed to these trends including but not limited to: rising prices for brand-name prescriptions; lax federal regulation; costs of storage and distribution to consumers (the wasteful "middlemen"); rigid insurance company models of drug coverage; increased direct-to-consumer tax exempt ad spending by pharmaceuticals; and lack of drug patent reform.
Out-of-pocket expenses will only increase for those with fewer resources to pay. According to a KFF poll, at least one in four patients find it difficult, or somewhat difficult, to afford their prescription drugs. Poor, underinsured, ethnic/racial minorities, and the economically disadvantaged will continue to bear the burden of increasing drug prices.
In my training and in my current hospital practice, the human implications are apparent. Patients with less financial resources choose between bringing food to the table for their families or self-care. Out-of-pocket prescription drug expenses can lead to delay of care, high rates of bankruptcies, worsening disability, and even death. The latest example is the rationing of insulin. Despite being discovered in the 1920s and costing an estimated $2 to $4 to produce a vial, insulin in the U.S. can cost nearly $300/vial. A recent study found that insulin costs have been shifted to patients through a high cost-sharing payment model, further contributing to a lack of access and lower adherence.
Although government programs, such as Medicaid/Medicare, and private insurers pick up most of the bill, these high costs are ultimately passed on to the public as higher insurance premiums, in-hospital healthcare costs, and taxes. The U.S. is ranked #1 in drug price expenditure per person, at a whopping $1,300 a year, with Germany trailing close in the #2 spot. This is economically unsustainable and has to stop.
Drug price reform that reflects value over price is essential to increase care access, avoid hospitalizations, and improve equitable health outcomes in vulnerable patients. Price control for generic and brand-name medications paid by government programs is essential. Additionally, the government should develop its own manufacturing capacity for generic prescription drugs, similarly to California's insulin initiative. Drug patent reform should also focus on innovation with fewer exclusivity expansions, and greater efforts toward repurposing existing prescription medications without re-patenting of old drugs. Small pharmaceutical companies that innovate should receive fast-track FDA approval that reduces costly bureaucracy. Importation of generic drugs from more cost-effective markets (like Canada, India, and Mexico) can further alleviate prices through competition. According to the Congressional Budget Office 2022 report on prescription drugs, the high availability of generic prescription drug use is associated with slower growth in drug spending.
No one deserves to be disabled or die because they cannot afford their medications. Publicly funded, universal access to life-saving medications is essential for equitable care. Medicare and Medicaid should be able to negotiate prices regardless of market forces and patents. Human life should be valued not as a calculated return on investment but as something to be nurtured and cared for.
Franklyn Rocha-Cabrero, MD, is an adult board-certified general neurologist and clinical neurophysiologist, and owner and solo practicing physician of Imperium RevDoc Neuroanalysis, a professional service medical corporation that provides culturally concordant care to diverse patient populations.