Transparency In Breast Cancer Care

In 2014, I came across an article titled “Protecting Cancer Care: Improving Transparency and Patient Access” that was posted by the Alliance for Patient Access, “a national network of physicians dedicated to ensuring patient access to approved therapies and appropriate clinical care. AfPA accomplishes this mission by recruiting, training and mobilizing policy-minded physicians to be effective advocates for patient access”. One of the things that caught my eye was the information including the disparity in treatment for cancer care and the lack of transparency regarding this issue.

“Policymakers and citizens must work to protect patient access to cancer treatments by promoting transparencies and regulating unfair insurance practices that do not provide equal coverage for comparable services and treatments.”Barbara Jacoby

What was most surprising to me was the difference that one may find in healthcare costs for the same procedure in the same geographic area with a variance of more than 100%. In the same studies it was shown that it has been estimated that by reducing price variations like this for insured individuals, some $36 billion could be saved annually. As if it weren’t already difficult enough for breast cancer patients to be surprised by the cost of their care and what is and is not covered by their insurance and what their out-of-pocket expenses may be, it is a real blow if you find out that you are being charged so much more than what others are being charged for the exact same treatment. But, this is not the whole picture!

Imagine that your treatment is being governed by what it called “Clinical Pathways”. Clinical pathways specify which treatment a patient should receive and in what order the treatments are to be delivered. These pathways are usually developed with insurers working with physicians to reduce costs and even improve cancer care. However, some do not rely as heavily on evidence and are based upon the cost of care. On top of that is something that is even more disturbing to me. Oncologists are also paid a bonus per patient, per month for each patient that is kept on the “clinical pathway”. And here we are now, more than 6 years later, encountering the very same issues with the lack of transparency in our cancer care treatments and finding that nothing has really changed.

The major problem that I see with this is that a breast cancer patient’s treatment can be as unique as a person’s fingerprints and to create one system to fit everyone with a financial incentive is to take away what may truly be what is the best treatment for the patient. This idea took me right back to the day when my first oncologist indicated that the best treatment for me, based upon someone my age with my stage of cancer was chemotherapy and then radiation. Since I chose to find a different oncologist, who tested the actual cancer that I had removed in order to make a decision on what the best treatment course would be for me, not only was chemotherapy not recommended but also radiation treatment was an optional treatment.

I am sure that I am not the only one who may have been sent down a “clinical pathway” had I just blindly followed what I was originally directed to do. But unless we demand greater transparency across the entire healthcare system so that the costs of procedures and medications are readily available and understandable, patients will not be able to make informed healthcare choices. This is especially true for diseases like cancer that are of such a serious nature. Patients who have paid their insurance premiums and/or Medicare payroll taxes for decades deserve to receive help when paying for cancer treatments. Policymakers and citizens must work to protect patient access to cancer treatments by promoting transparencies and regulating unfair insurance practices that do not provide equal coverage for comparable services and treatments. In this way, each patient will be provided with a better ability to make choices in treatment of their individual cancer situation and not be governed by hidden costs that will ultimately be passed on to medical professionals who choose to recommend treatments that a patient may not only not need but that may actually be harmful to them.