How Are We Still Dying From a Curable Disease?

Hepatitis C Prevalence:  The Mystery of Unreported Cases

By Carol Smyth, MD & Brian Saindon


Hepatitis C is now a curable disease, if caught early and treated.  The key word in that sentence is “caught” – finding people infected with the hepatitis C virus (HCV) in order to treat them is an ongoing problem.  “Why are so many Americans dying of this preventable, curable disease?” asked Jonathan Mermin, M.D., Director of CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention in a CDC statement.

To better understand and estimate the prevalence rates of HCV in the US, a team of clinical experts and data scientists at Medivo is conducting an analysis of HCV+ people in the Medivo lab test database, which is drawn from a nationwide group of lab test partners and includes results from tests conducted in over 150 million patients.  We are studying hepatitis testing rates and test results from the January 2011 to May 2016 time period, working to add to the knowledge about national HCV prevalence. We are also looking at HCV test results from patients in our home state, New York, in order to compare these results to those published by the New York State Department of Health. This will help us get a better sense of how well reporting at the state level currently reflects HCV prevalence in one state, and also examine how this information can inform public health programs aimed at combating HCV.

The results of this study will be valuable to those responsible for planning and implementing education programs in HCV, including clinicians, public health workers, the pharmaceutical industry, and payers. In conducting this analysis, Medivo will identify patients that have been diagnosed, as well as those that may not have been, which will enable healthcare professionals to identify where treatment is needed and implement education programs to increase testing and improve patient health.

HCV: Underreported, Underfunded, and Undertreated

Hepatitis C makes the news when a celebrity like Keith Richards or Pamela Anderson talks about the disease, or when we lose someone famous to complications from it, like Lou Reed. However, the continuing mystery about this infectious disease is that the actual number of Americans infected with it is unknown. Health officials at the Centers for Disease Control and Prevention (CDC) estimate the prevalence of infection with the hepatitis C virus (HCV) in the population is about 3.5 million people carrying the virus, but according to some experts, the actual number could be as high as 7 million people.

Surveillance programs aimed at determining the actual incidence (number of new cases) and prevalence (number of cases overall) of HCV in the US population are run at the state level; however, these programs are underfunded, resulting in underreporting and variable data quality.  In addition, the CDC’s overall budget for HCV programs is underfunded, with the CDC currently having about $1 to spend per known case of HCV in the US. Organizations such as the American Foundation for AIDS Research (amfAR) have called for the CDC hepatitis budget to be doubled, from $30 million to $60 million annually.  However, the most recent CDC budget proposal for 2017 only asks Congress for a $5 million increase in the budget for hepatitis, including hepatitis B programs – resulting in continuing underfunding for HCV surveillance, and an ongoing uncertainty about how many Americans have the virus.

Hepatitis C now claims more lives than 60 other major infectious diseases combined, according to the Centers for Disease Control and Prevention (CDC).  Since at least 2003, deaths from infectious diseases such as HIV, TB and pneumococcal pneumonia have steadily declined, while deaths related to hepatitis C have just as steadily increased.

Hepatitis C prevalence and mortality


How Can We Strive for More Successful HCV Treatment?

One of the greatest obstacles in treating this curable disease is identifying infected patients.  The hepatitis C virus often causes no symptoms in the earliest stages, only leading to serious disease years to decades later.  Over time, HCV can cause liver fibrosis, end-stage liver disease, cirrhosis, and hepatocellular carcinoma. Progression of the HCV infection can now be prevented with antiviral therapy,  but knowing that a patient is infected with HCV is key to getting started on treatment, and the CDC estimates that between 50% and 85% of people infected with HCV are unaware that they are infected.  “Once hepatitis C testing and treatment are as routine as they are for high cholesterol and colon cancer, we will see people living the long, healthy lives they deserve.”, says Mermin.  

Over the next few weeks, via a series of blog posts and other content, we will present our study method, the results of our study and analyses, and the implications of our findings. We will also  outline the research projects that are needed to arrive at more accurate HCV prevalence statistics nationwide. This is critical in order to best allocate limited public health resources to better combat HCV – and potentially save lives.

We invite you to follow us through our study and analyses, via our blog posts published over the next month. Next week we’ll address how to improve HCV surveillance to better estimate HCV prevalence.  We welcome your thoughts and feedback throughout this project. Please comment below, or reach out to us at


  1. The Medivo lab test database includes mainly the general US population being tested in physician offices and in hospitals, therefore, it will not include analysis from patients in some groups at high risk for HCV, including individuals who are homeless, incarcerated, or are intravenous drug users. However, our research will offer nationwide and New York state-based views of HCV prevalence that are currently not available from any other reliable source, particularly one using a large database.
  2. Medivo has presented HCV research based on our database at major medical meetings.  More details in the Additional Reading List below.
Additional Reading:
  1. AmFAR. Hepatitis C in the United States: A Hidden and Growing Epidemic. Available at:
  2. CDC. Hepatitis C Mortality. Available at:
  3. CDC.Hepatitis C Kills More Americans than Any Other Infectious Disease. Available at:
  4. CDC: Recommendations for the Identification of Chronic Hepatitis C Virus Infection Among Persons Born During 1945–1965. MMWR. August 17, 2012 / 61(RR04);1-18. Available at:
  5. CDC. Overview of the Budget Request.  Available at:
  6. CDC. Surveillance for Viral Hepatitis – US, 2013. Available at:
  7. Edlin BR, Eckhardt BJ, Shu MA, et al. Toward a more accurate estimate of the prevalence of hepatitis C in the United States. Hepatology;2015;62:1353 – 1363. Abstract available at:
  8. Udompap P, Mannalithara A, Heo N, et al. J Hepatol. 2016; 64(5): 1027–1032. Available at:
  9. Medivo abstracts:

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