THE "NEW" PROSTATE CANCER INFOLINK

In an article in the October 25 issue of The ASCO Post, Dr. Jonas de Souza of the University of Chicago has introduced a new initiative to help all cancer patients and their doctors address the increasing problems associated with the costs of cancer care.

In this recent article, Dr. de Souza argues — very reasonably in our opinion — that oncologists and other physicians who treat cancer can’t always be expected to be experts on the detailed cost issues affecting individual patients — because individual patient costs and other factors are going to be affected by the exact health insurance available to those individual patients. However, he also goes on to argue that those same oncologists and other physicians should be doing something that they are very used to doing for all the other side effects of treatment for cancer. He writes that physicians should:

… focus on how the financial consequences of these therapies may impact our patients’ health-related quality of life.

… learn and share data about financial toxicity. Document whenever your patient cannot take a medication because of costs. Document when a patient on treatment declares bankruptcy. Document when a patient reports changes in his/her daily life due to financial concerns. Just like any other side effect, documentation of financial toxicity is the key to understanding it.

He goes on to write that:

Last, let us share this knowledge among ourselves and with our patients. Let us develop mechanisms to share and increase our knowledge about this side effect.

This may be one of the most concrete and immediately actionable sets of recommendations that anyone has made to date about the problem of financial toxicity associated with cancer care in particular and medical care in general. What is even better, Dr. de Souza and his colleagues have already set up a registry system to start to collect this type of data that patients can already use and participate in … through the Cost of Cancer Care web site.

So here are some things that we think the US-based prostate cancer community can do to help address the whole issue of the cost of prostate cancer care by helping Dr. Souza and his colleagues to collect and disseminate relevant data:

• Go look at the Cost of Cancer Care web site yourself, and in particular,
  • Look at the treatment-specific resources and the foundations and other organizations available to help you and others deal with financial problems
  • Fill out the brief on-line questionnaire that you (and others) can complete to tell the research team about how cost factors are affecting you as a patient (or as the care-giver for a patient)
  • Volunteer to participate in the registry research study
• Tell your own urologist or medical oncologist about the article by Dr. de Souza, the Cost of Cancer Care web site and the registry study (and maybe better still, tell the nurse or office  manager who helps you with financial issues at the practice).
• If you are a support group leader or other prostate cancer educator, tell your support group members about this initiative.
• If you just know other patients or families dealing with the costs of cancer care, let them know about this web site too.

There are millions of cancer survivors living in American  today — and more than 2 million of them are prostate cancer survivors. If we can all help Dr. de Souza and his colleagues to truly document the details of how financial toxicities affect the lives of people undergoing cancer care (and in our case care for prostate cancer in particular), then it will become much more likely that we can all work together to help to overcome and resolve some of these problems.

Filed under: Living with Prostate Cancer, Management, Treatment | Tagged: action, cancer, care, cost, financial, research, toxicity |