By: Marcus J. Hopkins, Policy Consultant
Every week, I submit to the Community Access National Network five or six potential topics to cover for HEAL Blog along with links from which to start my reporting. After they select my topic, I’ll go to the original source and research more, from there, trying to get various takes on the topic, verify the facts stated, and back up any assertions I make with evidence and citations.
Twice, this year, I have run into issues with reporting: the assertions the writers (and in some cases, state officials) make do not comport with the data they cite.
The first was in January. A story appeared in my daily newsfeed stating:
Data from the Centers for Disease Control and Prevention released Wednesday showed Oklahoma had the highest rates of deaths from complications of the virus and of people living with hepatitis C infections, other than the District of Columbia (Wingerter, 2019).
Now, this struck me as odd, given that, when it comes to Hepatitis C (HCV) statistics, I tend to be very on top of things. So, I fired up a Google search: “CDC Hepatitis C Oklahoma”. I got a couple more hits linking me to similar stories on various news websites, all of which cited this same CDC report. Thinking I’d missed something, I went directly to the CDC website…and their Morbidity and Mortality Weekly Report (MMWR) website…and the National Institutes of Health (NIH) website, since they often get lumped together with the CDC. And what I found after an exhaustive search of all three sites was…
And believe me, I tried to find this supposedly recent report that supposedly bumped the state of Oklahoma’s rate of new HCV infections up from being tied for 13th-highest rate of new infections in 2016 (a rate of 0.8 per 100,000 – lower than the national rate of 1.0) up past a staggering 21 states (including states that had tied rates higher than Oklahoma in 2016) and above West Virginia’s rate of 5.1. Their rate of new infections would’ve had to increase by 4.4 points in order to beat out my home state.
An increase of new infections of that magnitude would most certainly have made the rounds within the numerous HCV newsgroups, searches, action committees, and advocacy councils from which I get approximately thirty E-mails a day.
So, I did what any good researcher or reporter would do and contacted each of the writers whose stories cited this alleged report (without providing any links to the CDC’s Viral Hepatitis page or to the report they reference):
My name is Marcus J. Hopkins, Project Director of the HIV/HCV Co-Infection Watch. I’m writing in regard to a story you reported on [date] in [publication]. I am attempting to find the report from the CDC that you cite in your article, but am having no luck finding this report on the CDC’s website, the MMWR website, or the NIH website. Could you please provide me with a link to this report, so that I can properly cite this in an article I’m working on related to this reporting of a massive increase in new HCV cases in Oklahoma.
I hope all is well, and that I hear from you, soon.
Marcus J. Hopkins
That request was sent to a total of four different reporters, and was followed up by requesting the source via social media responses on their respective tweets linking to their articles. It is March 14th, as of this writing, and I have yet to receive a single response via any platform from any reporter.
The second instance occurred, today, when another article showed up in my newsfeed; this time, from California. The headline reads, “Upswing in New Cases of HIV, Hep C and STDs Prompts Call for Statewide Task Force” (Knight, 2019)
Again, I was confused by this reporting, because I am pretty on top of those data, as well. When last I checked, aside from a single-year uptick in new infections in 2014, rates of new infection have been on a relatively downward trend since 2010, in California (see chart):
Starting with a rate of new infections of 17.1 in 2010, that rate has decreased in all years except for 2014, when the rate jumped 1.2 points from 14.8 in 2013 to 16.0 in 2014. Since that year, once again, the rate of new infections has continued to decline, finishing at a rate of 15.2 in 2016 (CDC, 2017).
Moreover, this report also asserts that new HCV cases in California were up, as well; and, again, the data considered the gold standard – those provided by the CDC – do not back up this assertion. From 2012-2016, the rate of new Acute HCV infections in the state of California have remained consistent: 0.2 per 100,000 (CDC, 2018).
So, where is the disconnect between the data that are available, and what is being reported? Honestly, I cannot come up with a valid excuse for this kind of reporting. As an advocate for Viral Hepatitis and an activist and advocate for HIV, as well as someone whose job depends on accurate reporting, these kinds of oversights – willful or otherwise – frustrate me to no end. I work very hard, every week, to ensure that the data I report are accurate, and if I discover that I have misreported something or made an error, I go out of my way to ensure that I respond to those instances as quickly as possible.
Why is it important for reporters and researchers to do their due diligence and go the extra mile to back up their statements of fact? For this reason: the data we put forth are going to be used by people who either don’t have the skill, or the wherewithal to do their own due diligence. They’re going to be used by well-meaning activists and advocates when they go to elected and appointed officials and cited as facts. If and when those officials discover that the data being used to argue a point are incorrect, they immediately begin to disregard the efforts of those with whom they do not already agree on an issue.
Worse, still – repeated instances of poorly cited and sourced data are frequently used to discredit those who advocate for increased spending on infectious diseases. If we use incorrect data and do not immediately correct ourselves, we’re shooting ourselves in the collective foot. How are we going to convince officials who are on the fence about the need to legalize, establish, staff, and fund Syringe Services Programs to prevent the spread of HIV, Hepatitis B, and HCV amongst People Who Inject Drugs if we go to them was data that does not support our assertions?
The crux of the issue is this: it is owed to the American public (and, indeed, the world) to accurately report data and describe trends as they relate to infectious disease. When we erroneously report observed increases in new infection rates, only to be proven wrong, citizens and officials, alike, begin to accuse us of being hyperbolic; of being overly dramatic; of overplaying the risk. And the last thing that we need is for those people to be correct.
- Centers for Disease Control and Prevention. NCHHSTP AtlasPlus. Updated 2017. https://www.cdc.gov/nchhstp/atlas/index.htm. Accessed on March 14, 2019.
- Centers for Disease Control and Prevention. (2018, April 16). Table 4.1. Reported cases of acute hepatitis C, nationally and by state and jurisdiction ―United States, 2012-2016. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention: Division of Viral Hepatitis: Statistics: 2015 Surveillance. Retrieved from: https://www.cdc.gov/hepatitis/statistics/2016surveillance/index.htm#tabs-3-1
- Knight, N. (2019, March 12). Upswing in New Cases of HIV, Hep C and STDs Prompts Call for Statewide Task Force. CA: California Health Report. Retrieved from: http://www.calhealthreport.org/2019/03/12/upswing-in-new-cases-of-hiv-hep-c-and-stds-prompts-call-for-statewide-task-force/
- Wingerter, M. (2019, January 20). Oklahoma has highest rate of hepatitis C infections, deaths. Oklahoma City, OK: The Oklahoman. Retrieved from: https://newsok.com/article/5620598/oklahoma-has-highest-rate-of-hepatitis-c-infections-deaths
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.