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Affordable Care Act: The Effect on Cancer Patients

Posted on June 19, 2014

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 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.

12 Responses to “Affordable Care Act: The Effect on Cancer Patients”

  1. richard rouleau says:

    I understand this is about ACA and colon cancer but I have Blue Cross of AZ, I pay 1400 a month for my wife (colon cancer surviver) my son and I. Last year with the monthly payments I paid $22,600 in medical costs. Just wrong

  2. Bunny Terry says:

    I am a stage iv colon cancer survivor and just had a round of scans and tests for my one year follow up. I am insured by BCBS through the ACA marketplace. My out of pocket was only $50, which I keep worrying was a mistake. Obviously I am done with treatment right now (hopefully forever), but my experience has been nothing but positive.

    • Angie says:

      I also have stage IV colon cancer. I am currently on chemo (the lifetime plan). I have had BCBS insurance through my career for 30 years, but as of January I will lose this insurance and have to find new insurance. I would like to keep My BCBS exactly as it is. What kind of premiums are you paying? And do you have great insurance? For example good pricing on prescriptions, no co-pay, see whatever Doctors you would like? I know in the past BCBS has had different packages, I just need to start my research before January .
      Thanks for any input!

  3. Mary says:

    In 2012 I was diagnosed with breast cancer. Had surgery, chemo and radiation. My co-pays were much lower. The co-pay for the needed Neulasta
    shot was $25.00. Fast forward to 2014. Diagnosed with Stage IV Colon Cancer. Co-pay for Neulasta shot – $100.00!! This means that treatment for my cancer will run approximately $360.00 a month. I am currently on disability receiving 60% of my salary. I have to decide whether to eat, pay a bill or receive treatments. It is a outrage.

  4. Karly says:

    While I support the mission of helping people find the best health insurance and healthcare options for them, I have to wonder what this this article does to serve that purpose. I personally support a single-payor “Medicare for All” program for covering healthcare expenses in the United States, but as an adult who’s disabled due to chronic illness (and awaiting the start of federal benefits), I was glad to be able to purchase insurance on the marketplace regardless of my pre-existing conditions. Without the ACA, I would not have been able to purchase any insurance that would cover what I’d need it for. My point is that, though it’s far from perfect, the ACA does take steps to improve a severely broken private health insurance industry. When evaluating whether a reform program is helpful or not, it’s useless to just ask people whether they are having difficulties (by which I do NOT, in any way, mean to dismiss the very real hardships faced by the people quoted here and many others like them). Evaluation of a reform program also needs to look at whether things are improving, worsening, or otherwise changing compared to the prior system it’s trying to reform! This article does none of that and, thus, serves as an interesting anecdotal piece, but nothing more. My worry is that some may read an article like this and decide that it’s not worth it to look into insurance options that might actually benefit them.

  5. Debby says:

    my husband is diagnosed with stage 4 metastatic colon cancer. we are running out of options due to the genetic component of his cancer. i am currently paying $1557.00 a month for cobra to keep him covered under our plan. we spoke with an “insurance consultant” who clearly stated the ACA marketplace is not for someone like my husband. he is not eligible for medicare until the fall of 2015. we have relocated off long island, leaving most of our family behind, including our life long friends, and a new grandson, in hopes of being able to afford to keep paying for cobra and other medical and living expenses. he was on xeloda, which is oral medication and we have no coverage for it. fortunately the pt assistance program helped. now we are using new medication and again appealing to the drug company for help. it’s sad and frustrating. not to mention so scary.
    i never get too excited when they announce there may be a new drug coming, because we fear there will be no coverage or financial help. how horrible to try and keep your loved one, alive, happy and comfortable, and never know day to day if you can afford it. how do you make these kinds of decisions? healthcare vs. cost. terrible.

  6. Nancy says:

    I have to agree with Richard. The cost of colon cancer for people in the Marketplace and Private Sector Insurance is outrageous! The deductibles and out of pocket max is high. Than the after care treatment to stay healthy breaks the bank, too. It makes you want to stop getting follow up Ct. Scans, Colonoscopy and blood tests all together.
    I am a Stage III colon cancer survivor diagnosed May 2012. Since being diagnosed I am in credit card debt from medical bills and more are coming. Before being sick I had less than $1,000 on a credit card, now I am buried in bills! They keep coming, too, the expense of staying healthy.
    The article is right the Middle Class and Poor is falling through the cracks when it comes to medical care.

  7. dot says:

    It is o disheartening to see how our financial systems, namely insurance leave us at their mercy and laughing all the way to the bank. My son had colon cancer for which his infection is still being treated..His cancer involved the removal of his tailbone., and scheduled for another surgery. He had good corporate diusability health insurance which changed om Corporate September 7th. .Rehab has been cut as well as supplies yet annuity has been cut. I am one of many who have lost faith with our insurance

  8. dot says:

    Whats happening to our coverage for cancer/

  9. carolyn unser says:

    I am a stage 4 survivor and undergoing treatment at this time. I also have had so much trouble with insurance only covering a small amount of the bills that keep coming in, it has also effected my treatment. my out of pocket costs are more than I can afford and keep getting worse all the time. I do wonder what will happen when Iam unable to get funds for my medicines that are needed. what doesn’t help I live on limited funds, disability, which do not go very far. what is a person to do? the co-pays may not sound like much, when you go to th doctor a few times a month it gets really expensive.

  10. kim rebello says:

    I am a stagelll cancer survivor. The very first day I started my chemo,I was told by the billing dept. that my insurance company had confirmed to them that I was 100% covered.A month later I found out my insurance company dropped me.I am left with 50,000. worth of bills from my treatment. I went back to my oncologist for my check-up and was treated like a criminal because I hadn’t yet paid him. Are all the doctors in practice just for the money or the gratification of making their patients well?

  11. Sheryl says:

    I am doing research for an article about the ACA and how it has impacted cancer patients, costs and decisions. Your article and patient responses are very helpful and in line with what I am hearing from healthcare professionals, patients and care givers.
    Thank you for taking the time to ask patients their thoughts

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