By: Marcus J. Hopkins, Blogger
I’m a data person. While I can feign empathy, when it comes to reporting about HIV, Hepatitis B (HBV), and Hepatitis C (HCV), I’m much more of a “numbers” person. So, when Emory University announced, last year, that they were releasing a pair of websites (funded by Gilead Sciences who, in the effort of full disclosure, also fund the Community Access National Network’s HIV/HCV Co-Infection Watch) that would provide advocates, activists, and organizations with tools to help them advocate, I was super excited.
“You can create one-sheets to serve as starting points for state-level and Federal advocacy,” they announced. This is an awesome tool that saves organizations and individuals from having to dig through mounds of data and create their own one-sheets. This tool has so much potential to be a turning point in the way we organize advocacy efforts.
And then, I visited the sites.
The data was (and still is) out of date. AIDSVu was (and still is) using old numbers. The data presented on AIDSVu haven’t changed, and when the sites rolled out in 2017, they were already a year out of date, presenting 2014 data, when 2015 had been available for nearly six months.
The data on HepVu was (and still is) even worse. In 2017, when the site launched, HepVu was using statistics from 2010 – a full four years out of date with the information that was released by the U.S. Centers for Disease Control and Prevention (CDC) in May 2017. Within a month, the data became five years out of date, as the numbers from 2015 were released in summary, and then in detail by June 17th, 2017.
This is a problem.
Any person who works in healthcare advocacy can and will tell you that, unless you have accurate and current data to support your advocacy, you aren’t going to accomplish what you set out to do. The expectation that we are going to sway local, state, and/or Federal legislators with data that are not only woefully out of date, but represent years before there was an explosion of new infections, is a pipe dream.
To use my home state as an example, the data presented by HepVu for West Virginia indicates that in 2010, WV had 21 new Acute HCV infections, with a rate of 1.1 (per 100,000). Had that data been updated in May 2017, they would’ve been using 2015 statistics, in which there were 63 infections, with a rate of 3.4 – literally triple the amount of new infections, and more than triple the rate. Were they using the most recent statistics from the state, they would be showing that, in 2016, there were 132 new HCV infection, with a rate of 7.2 – more than double the year prior.
It is easy to understand why the 2016 numbers, which are the most current available, will be more effective in any advocacy efforts.
But, the problem doesn’t just begin and end with AIDSVu/HepVu. As I’ve been gathering state-level data for an upcoming presentation, virtually every state in the U.S. has woefully outdated information available on their respective epidemiology (or equivalent) websites:
Kentucky – the state with the third-highest rate of HCV in the nation (2.7 in 2015) – hasn’t updated its Hepatitis C Department for Public Health website since February 24, 2016, and is still inviting people to attend the 2016 Kentucky Conference on Viral Hepatitis on July 26th, 2016.
Colorado – the state’s quarterly HIV surveillance reports just stop after the 2nd Quarter 2017.
Georgia doesn’t even seem to have published reports on disease statistics, and requesting that data (which, by the way, is supposed to be public data) requires a minimum fee of $25.
Hawaii – the state department of health hasn’t put out an annual report since 2012.
The point is this: there will always be data lag – the time between the end of the year when a state’s data is gathered and the time when it’s verified and published. For most diseases, that seems to be about a two-year lag. But, if we ever intend to become better advocates, we need to rethink how data is gathered and presented in a timely manner.
I get it – not every state has the resources to track every disease, publish a report, and update their website (hell – Alaska’s Medicaid program hasn’t updated its Preferred Drug List since literally March 2015; I even E-mailed to ask, and was told that that date is correct…). But, we are getting to the point where, in 2018, these types of data need to be made readily available quickly and accurately. We literally have the technology; we can do it.
Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.