Topic Overview

We all know it:  cancer is expensive. It’s not a secret that people find it difficult to afford their prescription medications - especially cancer patients facing the expenses of specialty drugs. An average patient can expect out-of-pocket expenses to be between 20% to 30%. Very few insurance plans cover all of the costs in full. The stress and burden of facing these out-of-pocket costs is called “financial toxicity.” It’s a side effect from treatment that goes beyond the infusion room and touches the lives of families dealing with a life-threatening illness.

“The average U.S. family makes $52,000 annually. Cancer drugs can easily cost $120,000 a year. Out-of-pocket expenses for the insured can run $25,000 to $30,000 — more than half of a typical family's income[1].”

U.S. Prices

According to a recent study, “prices for many specialty drugs are higher in the United States than other developed countries, and about one in four people in the United States who take prescription drugs report difficulty affording them[ 2].” In fact, U.S. drug spending growth reached 8.5% in 2015, totaling $310 billion in total spending. Of that amount, $121 billion was due to specialty drugs, which is up more than 15% from 2014.

“Spending on specialty medicines has nearly doubled in the past five years, contributing more than two-thirds of overall medicine spending growth between 2010 and 2015. Increased specialty spending was driven primarily by treatments for hepatitis, autoimmune diseases and oncology[3].”

Spending Stress

In a survey of more than 10,000 patients, the Centers for Disease Control and Prevention (CDC) found that roughly one in three families reported significant financial burden as a consequence of medical care[4]. It is apparent that these expenses cause stress for cancer patients. [5]  There’s a complex math behind these drug prices, which results in some cancer drugs costing more than $100,000 a year and insurance companies increasing patient co-pays. Today, some estimates for a metastatic (late-stage) colorectal cancer patient's one-year treatment costs can be as high as $310,000, a cost typically found only for medicines used to treat rare diseases[6].

A Group Effort

In response to rising costs, many pharmaceutical companies instituted patient assistance programs providing medications at low or no cost to qualifying patients. The problem is these programs just aren’t enough and they are unable to help patients that do not qualify. For many going through treatment, the pervasive increases in pharmaceutical costs are exacerbated by hospitalization, surgical, radiation and imaging costs. Cost of drugs and the cost of healthcare overall is a systematic problem that requires public discourse by patients, healthcare professionals, pharmaceutical companies, insurers, policy makers and device manufacturers. It’s a group effort.

Politics Gets Involved

Drug pricing can no longer be an opaque process. Presidential candidates openly discussed drug prices and Congress recently began weighing in as well. We need policy makers to explore new strategies to lessen the economic impact of new colorectal cancer therapies, such as easing restrictions on the federal government's ability to negotiate drug prices and asking drug developers to reassess their pricing policies. The bottom line is that this rate of increase isn’t sustainable for anyone, especially cancer patients.

Fight CRC’s Role

Fight CRC medical advisory board member Dr. Leonard Saltz, an oncologist at Memorial Sloan-Kettering Cancer Center, has been very outspoken on this issue.

"This is going to be a very difficult issue to resolve. No one effort will resolve it, but any effort to engage more people in the discussion and to raise awareness will be helpful. Congress is the organization that's going to be able to make a difference here." - Dr. Saltz

Fight CRC's founder Nancy Roach shared that this is an issue that needs transparency and open discussion:  "Patients have the most to lose, so I would love to see patient groups band together to force a discussion." Fight CRC is keeping the patient voice at the center of this conversation. While there are no active bills in Congress addressing financial toxicity yet, we are participating in discussions and comments with our partners and coalitions to make sure YOUR VOICE is heard. While cutting costs is important, it can’t be done at the expense of the patients’ best interest.

Your Role

Once something is proposed to Congress, we will need you at the front lines! Here's how you can get involved on this issue now.

Front Lines

Have you experienced financial toxicity personally? Tell us your story. And, sign up as an advocate. We'll let you know when it's time to take action. Informing Congress about this issue is the most effective way to change policy.

Need help?

Is financial toxicity impacting you? Talk to your doctor about the cost of treatment and any concerns you may have about finances. It's likely that they can give guidance for finding support.

There are many organizations dedicated to helping you. Some provide free or reduced-cost housing during treatment, financial assistance for medication or travel to and from appointments, along with other ways to help.

• See the patient assistance programs (PAPs) that help pay for prescription medications
• The PAN Foundation helps federally and commercially-insured people living with chronic, life-threatening and rare diseases with the out-of-pocket costs for their prescribed medications
• The Cancer Financial Assistance Coalition (CFAC) is a national group of organizations that provide financial help to patients
• The Healthcare Hospitality Network (800-542-9730) is an association of nonprofit organizations that provide lodging to families and their loved ones receiving medical treatment away from home.
• The American Cancer Society’s lodging programs. The Hope Lodge (800-227-2345) gives cancer patients and their caregivers a place to stay while in another city for treatment.

Additional Reading

The Washington Post - The contradictory reasons cancer-drug prices are going up 

References

[1] NPR - Doctors Press For Action To Lower 'Unsustainable' Prices For Cancer Drugs [2] JAMA -Recent Trends in Prescription Drug Costs [3] IMS Health Study: U.S. Drug Spending Growth Reaches 8.5 Percent in 2015 [4] Armstrong K RK, McMurphy S et al. Racial/ethnic differences in physician distrust in the United States. . Am J Public Health 2007;97:1283–1289. [5] Neugut AI, Subar M, Wilde ET, et al. Association between prescription co-payment amount and compliance with adjuvant hormonal therapy in women with early-stage breast cancer. Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology. 2011;29(18):2534-2542. [6] NCCRT -Increasing Colorectal Cancer Screening – Saving Lives and Saving Dollars [7] Kaiser Health Tracking Poll: January 2016