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The Colon Cancer Alliance is committed to providing support and empowerment to those who are affected by colon cancer. This is why we’re actively addressing the patient impact of high out-of-pocket costs for medicine when it comes to the Affordable Care Act (ACA) and exchange coverage. We continue to hear the stories: due to increased costs, many patients are making decisions about treatment based on financial implication as opposed to selecting the best treatment path to address their current condition.

The ACA and Health Insurance Exchanges were intended to address the need for affordable care. But, a recent Avalere Health study supports the patient testimonies we often hear; the majority of plans in the Health Insurance Marketplace are placing a significant out-of-pocket burden on patients with serious illnesses by requiring particularly high cost-sharing. These costs can create a financial toxicity which burdens patients at a time when they need to be focused most on their care.

With colon cancer, timely treatment can be of the utmost importance, especially for patients whose cancer is aggressive. When out-of-pocket costs become exorbitant, patients suddenly have to weigh the cost of paying for the drug they need versus quality and quantity of life. These decisions not only impact the individual – it can have a ripple effect throughout a family who is working to collectively make ends meet. This is especially true for patients with metastatic disease, whose chemotherapy copays can cost hundreds – sometimes even thousands – of dollars per treatment.

In some cases, inhibiting costs take important treatment decisions out of the hands of the patient altogether and place them at the mercy of a third party who may be able to  pay for the drug. For example, a patient in our community was recommended for a treatment regimen of Xeolda, Erbitux and Avastin by his treating oncologist.

In this patient’s words:

“On Thursday, the pharmacy called regarding the Xeloda and told me the co-payment was $1,212. I told them I couldn't afford that, so they said they’d look for a foundation to pay for it. An hour later, I got a second call to let me know that they’d gotten the cost approved up to a certain amount. I figure it’s enough to get me through the first three months of treatment, maybe.

The next day my oncologist calls me. The Erbitux and Avastin are too expensive, but he’ll ask around to see about what can be done. Regardless of the hold up, he told me to start taking the Xeloda. I'm left wondering: will I have to spend the rest of my days chasing down foundations or other organizations trying to get my medications? And what happens when we can’t find someone to fund them?”

It’s no secret, cancer care can be expensive. But, are we now to the point where we’re telling patients that if they can’t afford treatment, they must go without?  New drugs are entering the market and giving cancer patients hope – hope to see kids or grandkids grow older, hope to improve quality of life, hope that cancer won’t define their final days. With the high out-of-pocket costs we’re seeing through the ACA and Health Insurance Exchanges, these treatment options may simply not be an option for those without the financial means to pay.  Do we really want a society where the rich can survive for years but the middle class and poor cannot?

To get more information about the Health Insurance Marketplace and to learn about coverage in your state, check out healthcare.gov. And please, share your stories in the comments. Have you had high out-of-pocket costs due to coverage you obtained through the Health Insurance Marketplace?

PrintThis post originally appeared on the PhRMA Conversations Forum.

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