In this post, I started breaking down the STAR act to discuss where the $30 million will go each year. Let’s move on to Section 102: IMPROVING CHILDHOOD CANCER SURVEILLANCE.
What is cancer surveillance?
Cancer surveillance is the ‘ongoing collection an analysis of new cancer cases, survival, and cancer deaths’. Why do we care about cancer surveillance? We care because we can’t deal with a problem if we don’t know how big the problem is, or if the problem is changing. For example, over the last 30 years, a type of liver cancer in children increased 3-4 fold. Not unrelated, over the same 30 year period, the number of preemies and micro-preemie babies exponentially increased due to improvements in technology and supportive care for these tiny little humans. It turns out that babies that are born prematurely and have very low birth weights have an increased risk of developing this type of cancer.
While it is clear that low birth weight is a risk factor for subsequent development of hepatoblastoma, we still don’t know exactly why this is. It is likely a combination of:
- Prenatal exposures (some reports say cigarette smoke..but that is complicated because smoke exposure causes low birth weight)
- Exposures after birth (i.e. medications to keep the baby alive or free radicals from oxygen issues due to poor lung development) which may be exacerbated by an immature liver unable to handle such exposures.
Anyway, the point is that this increased incidence was picked up by a case series and then confirmed by evaluating larger cancer registries. The graph below shows the incidence of hepatoblastoma from 1975 through 2007 and the smooth line shows the upward trend of the hepatoblastoma cases.
Registries and surveillance information are key parts of cancer prevention and control efforts and maintaining cancer registry databases is a BIG deal. Building databases costs a lot of money. For example, a small database for a short 1 year clinical trial can cost over 15,000 to build. Now imagine, you are trying to build and maintain a database for an entire state population that will capture the number of new diagnosis, the cancer type, the demographics (Age, sex, zipcode of patient), and the vital status (alive, deceased). Generally, each state runs and maintains their own database. These databases must be accurate and up to date. A poorly constructed database is worthless and doesn’t help in the effort to sort out what is going on with cancer trends. To create a really useful database, you must have money to build and maintain it.
Specifically Section 102 states that money from the STAR Act can be used for:
- Identification, recruitment, and training of patient data sources (e.g., medical facilities); This is important because the registry relies on the medical facilities to report the cases to them. Money towards this would bolster the number of faciliteies that participate in reporting and make sure the process is done smoothly so cases are captureed.
- Procedures and infrastructure for quick and easy inclusion of data in State cancer registries by electronic reporting; All electronic systems need updating and maintenance to make sure the systems “talk” to each other.
- The submission of anonymized biospecimen, clinical, and demographic data to the Center for Disease Control’s (CDC) national registry. No single center will treat enough children with the same type of cancer to make clinical data in any one geographic area meaningful. To help focus national efforts, CDC created a cooperative program, to help cancer registries collect and make the data on pediatric and young adult cases available more quickly among states.
There you have it. Why cancer surveillance matters and why it costs money to keep this ship afloat.
