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Cancer and “Cost”: The Real Story

CancerCare, a national non-profit organization that provides free psychosocial support, education and financial assistance to anyone affected by cancer, has released its landmark 2016 Patient Access and Engagement Report. The report is based on surveys that ‘touched’ more than 3,000 patients with wide diversity of ethnicity, income, education, geography, age, insurance, cancer type and treatment stage—in other words, you could find someone like yourself amongst them…or a family member….or a neighbor. People just like us.

  • CancerCare reportThere are some encouraging findings in the report that perhaps reflect the ongoing cultural shift towards more patient-centric clinical care in oncology and a more empowered “consumer” of healthcare services.
  • Nearly all the respondents could easily access diagnostic testing to confirm their diagnosis and reported having confidence in the expertise of the diagnosing clinicians.
  • The majority of respondents were satisfied with their clinical care coordination, understood discussions with their providers about their cancer and its treatment, and were able to connect with their healthcare team in a reasonable amount of time.
  • Respondents had positive opinions regarding the conversations and relationships they have with their physicians, especially those patients older than 55.

Bravo to the pioneers in the cancer space who, over the past decade, have fought to keep patients well informed. And to keep the clinical environment attuned not only to the pathology of the patient’s disease but to each person’s unique molecular profiles, unique values, and unique emotional needs.

But complacency is not yet in order, because as a society we have a long way to go. Let’s start with the subject of “cost.”

In today’s national dialogue, “cost” is usually about the prices of new targeted therapeutics, and whether they add “value.” Sometimes, the more inclusive costs are computed—taking into account all the laboratory, radiology, physician visits, and hospital stays. But almost always, we discuss these costs in the abstract, based on generalized descriptions of patient populations or large-scale claims data or economic models.

The CancerCare report has a different voice: that of real people grappling with the disease. People with families. People who are trying to hold down jobs and pay the rent and pick their kids up from school and decide whether to take the full dose of their medication or cut back to save money for a higher priority than their own well-being. And that voice is too often filled with anguish.

Here are some numbers that tell that story:

  • Despite 58% of respondents reporting being distressed about their finances during treatment, 25% of those younger than 64 said their care team never considered their financial situation during treatment planning; 34% said it was only “sometimes” considered.
  • Many respondents used care-altering strategies to reduce costs. Twenty-nine percent said they skipped doctors’ appointments; 38% postponed or did not fill drug prescriptions while 34% skipped doses; 30% ordered medications online from sources outside the US; and 31% cut oral medications in half.
  • One-third of respondents ages 25 to 54 reported cutting back on groceries and transportation; and/or borrowed money. One-quarter applied for financial assistance; 21% missed a utility bill payment; 17% missed a rent or mortgage payment.Like me, you probably don’t have a single colleague or friend who hasn’t lost a loved one to cancer. That “cost” is with us every day. With advocacy and support, CancerCare can help advance our nation towards a better recognition of these true costs, and towards policies that will truly address them.

Please read the report here and share it with others: www.cancercare.org/accessengagementreport.

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*Marcia Kean is a member of the CancerCare Board of Directors, and served on the Advisory Board of the CancerCare Patient Access and Engagement Report 2016.