High out-of-pocket prescription drug cost: the patient perspective
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A fact of life in the United States today is that patients suffer when their drug costs are too high.  That’s something on which a vast majority of Americans can agree, regardless of where one falls on the political spectrum.  In fact, according to the Agency for Healthcare Research and Quality, 71 cents of every dollar of healthcare spending goes to treating people with multiple chronic conditions. And it’s time Congress take swift and effective action to reduce the high burden of drug costs to patients.

High drug costs are particularly burdensome for patients living with some of the most common chronic diseases and conditions—such as heart disease, psoriasis, Crohn’s disease, cancer, type 2 diabetes, obesity, and arthritis.  Not only can these diseases be extremely painful, debilitating or, in some cases, fatal, but they can also be extraordinarily expensive to treat. This is not a small problem. According to the Centers for Disease Control (CDC) 133 million Americans—45 percent of the population—have at least one chronic disease.

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Fortunately, breakthroughs in new medications, particularly biologic drugs, are helping people with these conditions lead healthier and more productive lives. Patients whose conditions were once unmanageable are now able to hold jobs, raise families and engage in activities many of us take for granted. These innovative medicines, however, often come at a hefty out-of-pocket cost to patients due to health insurance plans’ practices, such as specialty formulary tiering.  Under tiering, payers use multiple categories to determine the patient’s share of a drug price. Tiers one to three usually require a co-pay and are capped with a flat dollar amount, such as $60.

However, “specialty drugs” that often address chronic conditions are being placed in higher tiers, forcing consumers to cover anywhere from 20 to 50 percent of the total costs out of their own pockets. These costs can reach several hundred to even thousands of dollars a month. For example, a patient with Crohn’s disease, is required by his insurer to pay 20 percent each time he receives an infliximab (Remicade) infusion, every six weeks. That comes out to be approximately $2,000 per infusion. In addition to the use of specialty tiers, patients with chronic disease face other threats to access including fail-first or step therapy policies and burdensome pre-authorization and re-authorization processes and limited access to providers under narrow network policies.

Across the country, when costs are too high, it puts patient access to critical medications at risk. Studies show that the higher the out-of-pocket costs, the less likely patients are to take their medications on time, if at all. While this is devastating for people with a life-long chronic disease, discussion about health care costs were conspicuously absent from the 2016 presidential debates. Drug breakthroughs can actually halt the progress of a disease; but, if left untreated, these diseases can leave a person severely disabled and in chronic pain.  It’s not just about quality of life, but it’s about costs to the health care system and to society when a patient is unable to afford the treatment they need. When patients are on the right treatment, they’re able to better enjoy life, participate in the workforce, thereby contributing to the economy. 

The Coalition of Accessible Treatments (CAT) has worked with Sens. Shelley Moore CapitoShelley Wellons Moore Capito20 Dems demand no more money for ICE agents, Trump wall We can accelerate a cure for Alzheimer's Gillibrand, Grassley reintroduce campus sexual assault bill MORE (R-W.Va.) and Chris MurphyChristopher (Chris) Scott MurphyOnly four Dem senators have endorsed 2020 candidates More than 30 Senate Dems ask Trump to reconsider Central American aid cuts Long-shot goal of nixing Electoral College picks up steam MORE (D-Conn.) on the high burden of cost to patients.  With the senators’ support, the coalition is hosting a panel discussion for Congressional health staff regarding high out-of-pocket costs and affordability issues affecting our patients. Patients must be at the center of these discussions, and the panel on Nov. 17 will include patients, a physician, and policy experts. This panel will provide staff the unique opportunity of hearing from those who are directly impacted. 

For several years, the CAT has strongly supported the Patients’ Access to Treatments Act (PATA), bipartisan legislation that enjoys more than 100 cosponsors. This legislation would limit cost-sharing for specialty therapies to no greater than the highest or non-preferred branded drug tier. It strikes the appropriate balance between recognizing the cost of such therapies and doing so in a manner that is on par with traditional approaches to managing drug spending.

As we look toward a new Congress and Administration, it seems abundantly clear that concerns about drug pricing and access will remain elevated. The PATA bill is one specific action Congress can take to begin addressing these challenges.

Beyond this one bill, the time is now for all stakeholders – patients, product manufacturers, payers and employers – to have substantive discussions about these complicated but important issues. Rather than be a pawn in a game between industry and payers, patients must be at the center of these discussions.

Driskell is Health Policy Manager, National Psoriasis Foundation and Co-Chair, Coalition for Accessible Treatment (CAT). The Coalition of Accessible Treatments (CAT) is a Washington, D.C.-based coalition that consists of more than 30 patient advocacy and provider organizations representing millions of Americans living with chronic and rare conditions as well as the physicians who treat them. The goal of the CAT is to break down the barriers that prevent patients from accessing critical life-changing and life-saving treatments.


The views expressed by authors are their own and not the views of The Hill.