By: Marcus J. Hopkins, Policy Consultant
HEAL Blog (Hepatitis, Education, Advocacy, & Leadership) has been in publication since October of 2013, and in that time, we have striven to provide evidence-, research-, and patient-based news, data, and treatment information in an effort to foster the growth of awareness of primarily Hepatitis C (HCV), but also other strains of Viral Hepatitis (VH), including Hepatitis A (HAV) and Hepatitis B (HBV).
As we draw nearer to our sixth year in publication, there are times when I, as an advocate, am achieving that goal. Are my friends and family better educated about VH? Demonstrably, yes. Are the greater HIV/AIDS advocacy and activism communities better aware about VH and the role it plays in the lives of People Living With HIV/AIDS (PLWHA) as a result of my efforts? I would argue that, yes, that is the case. Is my local community, here in Morgantown, WV, better educated about VH as a result of my efforts? That answer is less clear.
In fact, recent research published in Clinical Gastroenterology and Hepatology indicates that American citizens are largely unaware of VH, particularly HBV and HCV. According to the study of 14,745 participants (68 of whom had HBV and 211 had HCV) only 32% of those with HBV were aware of their infection and only 49% of those with HCV were aware of their infection (Zhou & Terrault, 2019). From these results, the authors have estimated that fewer than 50% of U.S. adults with HBV or HCV are aware of their infection (Zhou & Terrault).
More than just being unaware of their infections, the research also indicated which factors were associated with greater awareness:
For HBV, those who were U.S. citizens, had attained higher education, and those with abnormal levels of alanine aminotransferase (an enzyme found primarily in the liver and kidney) were likelier to be aware of their HBV infection;
For HCV, being non-Hispanic, having income above the poverty line, being unmarried, and having a history of Injection Drug Use (IDU) were factors associated with greater awareness of their HCV infection.
These factors, particularly those associated with HCV, are disturbing, particularly because part of the overall VH advocacy community’s goal was to help educate hard-to-reach/hard-to-treat populations – the poor and minorities, specifically. Perhaps the only bright-ish spot within these data is that IDU was a factor in greater awareness of HCV, so…at least our efforts are reaching “A” community…?
Advocates and activists have, for years, been calling for greater provider education and screening efforts, particularly in areas where underserved, under-recognized, and at-risk communities are likely to receive treatment. We have called for expanded screening and testing for HBV and HCV in every healthcare setting, from private practices and hospitals, to clinics and incarceration settings. And yet, those efforts, particularly those which are not backed by costly litigation, seem to repeatedly fall upon deaf legislative ears, despite mounds of evidence being heaped upon elected and appointed officials indicating that we have a growing epidemic.
And then, I think back to my days in HIV advocacy. Much of the battle for combatting the spread of HIV has, for the last nearly-forty years, been a massive effort to spread awareness and expand testing. Current statistics from the Centers for Disease Control and Prevention (CDC) indicate that, in 2016, an estimated 1.1 million people in the U.S. had HIV, and of those, 14% (1 in 7) were unaware that they were infected (CDC, 2019). That percentage, back in the 1980s and 90s, was exponentially higher, despite efforts to increase awareness. It took nearly three decades of advocacy and activism – and countless lives lost in the process – to have a demonstrable impact.
What frustrates me, however, is that, as opposed to the 1980s and most of the 90s, access to the Internet is no longer severely limited; social media platforms now exist; we have almost the entirety of the planet’s history, research, and data literally at our fingertips. And yet, it is almost as difficult, now, as it was thirty years ago to disseminate medically accurate information, statistics, and health risks to the American populace.
Back in the 1990s, when HIV education campaigns were really ramping up into full-gear, combating rumors about the disease involved addressing the spread of word-of-mouth and Right-Wing fear mongering reports. Now, there are entire organizations dedicated to spreading misleading, misunderstood, or outright false information about HIV on the Internet, and their reach is broader than ever.
Numerous data indicate that Americans, in particular among international citizenships in similarly wealthy nations, largely lack understanding of basic scientific facts and the scientific process more broadly (Scheufele & Krause, 2019). As a nation, our appalling lack of understanding of basic science – which includes health-related scientific information – greatly hampers the ability of scientists, educators, the government, and advocates to impress upon our citizens the nature, severity, or risks related to several issues, from climate change to diet fads. Worse, still: further research indicates that Americans not only believe that our citizens don’t understand science, but that they are also concerned this lack of understanding is leading to disastrous consequences.
It is becoming increasingly difficult to combat misinformation, disinformation, and conspiracy theories that originate online, particularly when we have elected officials who not only parrot and spread these falsehoods, but revel in their own ignorance – “You may be a scientist and an expert in your field, but you don’t know what you’re talking about, fella!” Even the occupant in our White House frequently bloviates about how neither scientists, nor researchers, nor educators, nor economists, nor military generals know what they’re doing, and yet, his base of supporters continue to not only support him, but agree with those accusations.
So, how does all of this impact awareness of VH?
Simply put, Americans have become increasingly distrustful of authority figures (in this case, scientists, educators, and doctors, and in no small part as a result of a decades-long campaign from certain political pundits and legislators to discredit them). In addition, physicians, nurses, and state and local governments have largely failed to do their due diligence when it comes to informing patients and citizens about VH. All of this is complicated by a lack of resources, both human, and financial, allocated to increasing awareness.
It’s going to be a long fight, and it’s going to get worse, before things get better. We are going to lose a lot of lives to VH as a result of too lax testing protocols, a lack of epidemiological disease reporting and data, and a failure to direct adequate funding to these efforts. Hopefully, in the end, we’ll have something to show for it.
- Centers for Disease Control and Prevention. (2019, April 12). Basic Statistics. 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 HIV/AIDS Prevention: HIV/AIDS: HIV Basic. Retrieved from: https://www.cdc.gov/hiv/basics/statistics.html
- Scheufele, D.A. & Krause, N.M. (2019, April 16). Science audiences, misinformation, and fake news. Proceedings of the National Academy of Sciences of the United States of America 116(16), 7662-7668. DOI: https://doi.org/10.1073/pnas.1805871115
- Zhou, K. & Terrault, N.A. (2019, June 04). Gaps in Viral Hepatitis Awareness in the United States in a Population-based Study. Clinical Gastroenterology and Hepatology. DOI: https://doi.org/10.1016/j.cgh.2019.05.047
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.