Financial toxicity is a term first coined by the field of oncology to describe the negative consequences of out-of-pocket costs for medical care on quality of life, access to care, and the ability to pay for basic life necessities, such as housing and subsistence. With the acceleration of research and development of new medical and device therapies, there is an increasing financial burden placed on patients and their families for the cost of health care. Although financial toxicity extends beyond the delivery of cardiovascular care, it is nonetheless a very prevalent issue affecting 3.9 million patients (1 in 5) with atherosclerotic cardiovascular disease¹ and 1.7 million patients (1 in 7) with congestive heart failure.²

I recently had the pleasure of meeting Mr. B, who wished to share his story to illustrate how financial toxicity impacts his life. He is a 67-year-old gentleman with a past medical history of pulmonary hypertension who has started on the "triple therapy" this past year – tadalafil, macitentan and selexipag. Although he derived some benefit from the initiation and up-titration of tadalafil and macitentan to their full doses, it was not until selexipag (Uptravi) was added that he felt the relief of his symptoms, and stopped having "bad episodes" that sometimes resulted in emergency room visits and hospital admissions. For patients like Mr. B, selexipag is a life-saving therapy – not only for symptomatic improvement. Nowadays, he still has symptoms that limit his maximum exertion; however, he is able to partake in activities that bring him joy such as gardening or going on shopping trips with his wife.

When he first started selexipag, he was first contacted by the pharmacy regarding the exorbitant co-pay of thousands of dollars. At that time, the pharmacy applied for a financial assistance program, and after a brief phone call, he qualified for this benefit. He was able to have a full year of this medication without any copay.

About a month and a half ago, he received a letter informing him that his financial assistance program is coming to an end in a few weeks. He reached out to his pharmacy and was informed he would have to apply for another assistance program. This time around, he had to send an excessive amount of paperwork – all via physical paper mail or fax – in addition to multiple phone call interviews regarding his personal life and assets.

In the meantime, his initial assistance program expired. He was told by the pharmacy that he qualifies for an "emergency prescription" of nine days – at the high price of $200 per refill. Only a few days prior to our visit, he had been told that he does not qualify for the new financial assistance program because his yearly income is above their minimum income level. Now, he faces a monthly copay of $1,000 per month – a total of $12,000 per year – all because he makes $2,000 over their qualifying income threshold ($80,000). He continues to fill emergency prescription refills at this time, drawing deep into his retirement savings, and even wondering whether he needs to mobilize his assets that were meant to be his last resort for financial emergencies.

Mr. B knows that these medications work – he really pushed through the nasty side effects of diarrhea, frequent urination when diuretics were started, and wants to "do what it takes" to optimize his therapy for pulmonary hypertension. With his hard work and patience, he has reached a point he does not have to rely on the emergency room and hospital admissions to control his symptoms. Now, his care is being jeopardized by financial toxicity – a side effect that I, as a physician, have no remedy for. Mr. B had put his trust in our health care system – agreeing to a therapy that he knew would cause toxic side effects, only to realize a year later, financial toxicity is the limiting side effect to a continuation of his therapies. Ashrith Guha, MD, FACC, my clinical mentor and the director of the Pulmonary Hypertension Program at Houston Methodist DeBakey Heart and Vascular Center, explains that while there used to be financial assistance provided by the large pharmaceutical companies to be distributed by non-profit organizations such as the Pulmonary Hypertension Association, the assistance has been waning in recent years as more of the medications are going generic. Many patients like Mr. B and those with even less financial means are increasingly finding themselves without a safety net during a time of economic turmoil caused by the COVID-19 pandemic.

It goes without saying that this is not an isolated case – not the only condition or drug – in our world of cardiology that poses financial toxicity. Recent analyses of Medicare data have shown an annual co-pay of $4,987 for PCSK-9-inhibitors,³ and $1,626 for Entresto.⁴ As a trainee, I have felt the joys of convincing a patient to trial Entresto – cautioning patients of the physical side effects such as dizziness – and providing them a free bottle at the initiation. However, the case of Mr. B made me reflect on the message that I am sending to these patients. If they feel better on this medication – finally being able to perform their daily activities of living – are they all to empty out their savings to continue the medications I recommended? How many of these patients do so without sharing their financial troubles with their health care teams?

In reflecting on this case, Khurram Nasir, MD, FACC, a renowned researcher on the topic of financial hardship due to medical bills and professor of cardiology at Houston Methodist, provided some thoughtful insights. He pointed out that "Mr. B is not alone, but there is less known about these incidents. While there is extensive literature on this menace of financial hardship for cancer patients, the cupboard in regard to financial hardship borne by millions of patients and families suffering from cardiovascular disease is limited and we need more and better ways to illuminate these challenges to guide policymakers." He mentions that in matters regarding financial toxicity, "it is more concerning that the majority of patients reporting financial toxicity are 'insured,' clearly an indication that the current for-profit private insurance system is failing those who it was intended to protect from financial risk."

For Mr. B, I am grateful to be working in such a clinic, where Dr. Guha, Tracey Iammarino, MSN, RN, and Janet Hardy, MA, work tirelessly to find the necessary assistance for our patients. Mr. B tells me he has been blessed to find such providers with whom he feels close kinship and can reach out even for these financial troubles. Dr. Nasir sees hope and resolves in our medical teams tackling financial toxicity such as this: "we need to engage stakeholders and seek alternates… It's time the physician‐led guidelines don't shy away from leading the conversation on the 'just price' of these expensive medications and broaden consideration beyond the narrow focus on efficacy and effectiveness… We must have a broader societal perspective balancing costs and benefits and influence national health care policies, such as capping out-of-pocket expenses for low-income families."

To read a 2019 New York Times editorial on financial toxicity and cancer patients, click here.

1. Valero-Elizondo J, Khera R, Saxena A, et al. Financial Hardship From Medical Bills Among Nonelderly U.S. Adults With Atherosclerotic Cardiovascular Disease. J Am Coll Cardiol. 2019;73:727-732.
2. Wang SY, Valero-Elizondo J, Ali HJ, et al. Out-of-pocket Annual Health Expenditures and Financial Toxicity from Healthcare Costs in Patients with Heart Failure in the United States. J Am Heart Assoc. 2021:e022164.
3. Kazi DS, Lu CY, Lin GA, et al. Nationwide Coverage and Cost-Sharing for PCSK9 Inhibitors Among Medicare Part D Plans. JAMA Cardiol. 2017;2:1164-1166.
4. DeJong C, Kazi DS, Dudley RA, et al. Assessment of National Coverage and Out-of-Pocket Costs for Sacubitril/Valsartan Under Medicare Part D. JAMA Cardiol. 2019;4:828-830.

This article was authored by Hyeon-Ju Ali, MD.