"There is nothing new in the world except the history you do not know."
Harry S. Truman
The Surveillance, Epidemiology, and End Results (SEER) registry, which tracks cancer incidence, treatment and mortality, began in 1973, 43 years ago. I'm guessing that as soon as the database became live, people started complaining that cancer recurrence rates weren't tracked. Back in those pre-internet, pre-personal computer days, doing research was a lot harder and cancer was perceived to be a death sentence, so although someone, somewhere likely voiced the need to expand the database, the reference isn't easy to find..
But in 1997, the National Cancer Institute (NCI) published a paper, appropriately entitled "A New Agenda for Cancer Control Research." The report recommends that at a minimum "SEER should add the following information from the medical record:
Data regarding relevant biomarkers as they become available for measuring success in early detection and outcomes
Availability of tumor tissue for genetic epidemiologic studies
Co-morbidities as these influence diagnosis, treatment, quality of life and often outcome
Cancer recurrence to study cancer aggression and treatment success, and
Type of payment and medical care which affects access to care, treatment, and follow-up. "
Fast forward to 2013, when the Metastatic Breast Cancer Alliance was formed by about 15 different organizations, a veritable who's who in breast cancer. The alliance noted that there was no way to accurately know how many men and women had recurrences or were living with metastatic cancer, so set a series of goals, one of which follows:
"An ultimate goal of the Alliance is to have recurrences of metastatic breast cancer tracked as part of the standard operation of cancer registries and SEER. While that may take years to accomplish, scientists at NCI are attempting a statistical model to estimate current information."
It's been 43 years since the SEER registry was developed and at least 20 years since the NCI recommended that recurrences be tracked. For a patient with metastatic breast cancer, 20 years is about equal to about 800,000 men and women, mothers, daughters, sisters, husbands and brothers lost to the disease in the US alone. And yet, we are told something as simple as expanding a database will take years to accomplish.
Yes, we are being told that the past 20 years has not been enough time to implement the recommendation of tracking cancer recurrences, it will take
I probably don't have years left in my life to wait for this one column of data to be added to SEER. And, at the pace that collecting this data is going, my brothers and sisters will probably be dead before cancer recurrence rates can be accurately measured, which is the first step towards knowing if any of the research dollars spent in preventing metastases are producing results.
To put all of this into perspective, if we time travel back to when the report highlighting the need to include recurrence data was written, in August of 1997, google was not even registered as a domain name. Today, google processes over 1.2 trillion searches per year. Somehow the software and logistics were developed to enable over 3.5 billion searches a day, but in the same time, the NCI can not figure out how to add recurrence data to the cancer registry.
Note that the NCI's budget is $4.95 billion dollars for FY2015, and will increase to $5.21 billion in 2016.
Angered at how your tax dollars are being spent at the NCI? Ready to take action?
I will be outlining specific actions we can take later in the week to help change the future.