Great Article

Hepatitis C: Get Tested 

by Lucinda K. Porter, RN

The Centers for Disease Control and Prevention (CDC) estimate  the number of people in the U.S. with chronic hepatitis C virus  infection (HCV) is 3.2 million.[i] Other research places the figure closer to 5 million or more.[ii] [iii] The  bottom line is this—there are a lot of people in the U.S. with HCV.  Worldwide, there are 150-170 million people with this virus.[iv]

The sheer numbers of HCV-infected people is not our biggest  problem. The greater concern is that as many as three out of four people  with HCV do not know they have it.[v] In short, the majority of those with HCV don't know they harbor a  potentially deadly virus—a virus that claims more lives in the U.S. than  HIV does.

No diagnosis means patients aren’t aware that they risk  infecting others. It may mean decreased quality of life. No diagnosis  means no treatment. Diagnosis leads to choice, and choice leads to  health. For instance, in the CDC’s efforts to gather better data, they  learned that the majority of those who are HCV antibody-positive admit  to drinking an average of more than two drinks daily. 

Baby Boomers, those born in the years 1945–1965 account for  approximately three fourths of all HCV infections in the United States. 1  in 30 Baby Boomers are infected. Although Baby Boomers  make-up nearly ¼ of the population, they suffer nearly ¾ of the deaths  from HCV. If we do not intervene in the next decade there will be one  million cases of cirrhosis just from hepatitis C. This problem adds a  huge burden to our healthcare dollars, which in the U.S. means an  enormous Medicare bill.

The CDC has recommended one-time testing  for all Baby Boomers. It is a great idea but one facing more obstacles  than anticipated. For example:

  • Many doctors and patients have not heard the screening recommendations. 
  • Some think that the screening recommendations don't apply to them. 
  • People assume that their doctors have tested them for hepatitis C – usually this is not the case.
  • Even worse, patents assume they were vaccinated for it – there is no vaccine

Here is what you can do: encourage everyone born between  1945-1965 to be tested for hepatitis C. Ask them to encourage others. If  someone says, "Why should I be tested? I don't have any risk factors," tell them, "It’s  not how you lived—it is when you lived. Besides, aren't you worth a $20  to $25 test?" That is a cheap price to pay for peace of mind. 

Lucinda K. Porter, RN is the author of Free from Hepatitis C. To read her blog or contact her, visit 



[ii] Chak E, Talal AH, Sherman KE, et al. Hepatitis C infection in USA: an estimate of true prevalence Liver International 2011;31:1090-1101

[iii] Edlin BR Perspective: test and treat this silent killer Nature 2011;474:S18-19

[iv] World Health Organization

[v] U.S. Department of Health and Human Services Combating the Silent Epidemic of Viral Hepatitis

Hepatitis C and Quality of Life
Hepatitis C and Quality of Life — Lucinda K. Porter, RN Source:

What does quality of life mean to you? Is it your health, happiness,  financial security, spiritual wellness, or social well-being? It usually  means different things to different people. In healthcare, researchers  use surveys to measure the quality of life related to health,  abbreviated as HRQOL. When applied to hepatitis C, HRQOL is an important  concern.

For many, quality of life is a significant factor when making decisions  about hepatitis C treatment. Patients want to know if they are going to  get back a better quality of life in exchange for a temporarily reduced  one caused by the side effects of the HCV medications. In short, should  they stick with what they have, or go through a rough spell in order to  improve on their health? In this article, I highlight research on HRQOL  and various aspects of living with chronic hepatitis C virus (HCV)  infection. These aspects include quality of life with HCV, during HCV  treatment, and after treatment.

Quality of Life with HCV

If you look at the research, it is clear that HRQOL is generally lower  for those living with HCV. In a recent study published by Yamini and  colleagues,1 patients with HCV reported reduced quality of life. HCV  negatively affected patients physically, mentally, emotionally, and  socially. Yamini wrote, “The deleterious effects of HCV extend beyond  liver disease, as exhibited by the high prevalence of depression and  fatigue in the study population.” 2 (See HCV Snapshots for more about  this study.)

Reduced quality of life is a global problem. An Italian study conducted  by Umberto Cillo and colleagues, compared patients with alcoholic liver  disease to patients with alcoholic liver disease and HCV.3 The findings  were that having HCV negatively affects quality of life.

Multiple studies from all over the world confirm these findings. Graham  R. Foster, Professor of Hepatology at London School of Medicine wrote,  “Chronic infection with HCV has a profound effect on health-related  quality of life.”4 HCV patients report problems with fatigue,  depression, and sexual function. A chief complaint is neurocognitive  problems, such as impaired concentration and attention problems. Sleep  disturbances are another complaint among those with HCV, which also  lowered HRQOL.

If quality of life is affected by having HCV, then it would stand to  reason that patients with more liver damage (fibrosis and cirrhosis)  would report a lower HRQOL. At a meeting of the American Association for  the Study of Liver Diseases, Gerlinde Teuber and colleagues presented a  poster that tested this hypothesis.5 They found that as liver fibrosis  increased, quality of life declined. They also reported that viral load  and genotype were not associated with HRQOL.

Some studies compared HRQOL among the various liver diseases and other  causes of viral hepatitis. In a Greek study, Katerina Karaivazoglou and  colleagues found no HRQOL differences between those with hepatitis B  virus compared to those with HCV.6 Their findings showed fatigue and  impaired psychological function, particularly depression, as the key  factors that affected quality of life.

Although biological effects of HCV are well-documented, other factors  may also have an impact on HRQOL. HCV is stigmatized and many patients  report feelings of guilt, shame, and rejection. These feelings affect  self-esteem and relationships, which heavily influence quality of life.  In fact, knowledge of an HCV diagnosis lowers HRQOL. A few studies  examined this, with varying results. The findings are best summarized  as: those with HCV have a lower HRQOL, but those who know they have HCV  have a lower HRQOL than those who are unaware of their positive HCV  status.

Quality of Life during HCV treatment

In the years I have worked in this field, either as a n

urse or as an HCV advocate, I never once heard a patient report a better  quality of life during treatment. I’ve collected a few anecdotes of  positive side effects. A nurse at another hospital told me of two male  patients who begged to stay on ribavirin because it improved their sex  life. One female patient of mine with exceptionally thick hair said that  her hair never looked better because of treatment-related hair loss.  However, these and the few other tales I collected do not amount to an  improved quality of life during HCV treatment.

With its high side effect profile, it seems unlikely that patients are  going to feel better while they are actually taking HCV medications—they  take them hoping to get rid of the virus and to feel better after the  effects of the medication have worn off. Studies confirm what any  patient will tell you—HRQOL declines during HCV treatment.

However, the intensity of side effects is subjective, which may affect  how we perceive quality of life. Knowledge of laboratory results may  influence how we feel. A few studies showed that patients reported  improvements of quality of life after learning they had a good response  to the medications. However, the perception of quality of life isn’t all  in the head. Research conducted by Strauss and Teixeira showed that  before results were revealed to them, patients who were HCV negative  after treatment reported a better HRQOL than those who were  HCV-positive.7

Adherence to treatment does not seem to influence HRQOL, a fact  supported by multiple studies. Most recently, Patrick Marcellin and  colleagues observed that quality of life did not seem to fluctuate with  the level of adherence to treatment regimen.8 The real changes in  quality of life occurred after treatment.

Quality of Life after HCV treatment

Here is the good news: Marcellin and many others have researched this  topic so extensively that there seems little room to believe anything  else—quality of life increases when patients respond to treatment. In  short, patients feel better when HCV is gone. The evidence is robust and  plentiful. There is so much research telling us that curing HCV is  associated with improved quality of life, that to doubt it is like  believing that the world is flat.

When I thought about undergoing HCV treatment again (this will the third  time), it was from the perspective of stopping disease progression. I  can see and feel this disease taking its toll on my body. I want to stop  HCV in its tracks. Another compelling reason is that research tells us  that a sustained virologic response (SVR) to treatment reduces mortality  from all causes, not just liver-related ones.9 Increasing my mortality  rate is an excellent reason to undergo treatment for a third time.

However, now there is more incentive. The evidence points to the fact  that I may not just arrest the disease, but in time, I could actually  feel much better. The difference is subtle but important. Stopping HCV  is a good thing, but it is much more powerful to think that treatment  offers more than just stopping things before they get worse. The notion  that I could feel better is powerful motivation.

From time to time, I ask people who had a sustained response to  treatment if they can tell the difference. The response is always the  same. They glow when they tell me, “You have no idea how good it feels.”  It is all I need to know to make my decision.

Further Reading

Centers for Disease Control and Prevention Health-Related Quality of Life

HCV Advocate’s Medical Writers’ Circle Health Related Quality of Life and Hepatitis C, David Bernstein, MD

Yamini D, et al. - Tobacco and Other Factors Have a Negative Impact on  Quality Of Life in Hepatitis C Patients; Journal of Viral Hepatitis  October 2011; Vol.18, Issue 10 ibid.
Cillo U, et al.- Hepatitis C Virus Adversely Affects Quality of Life; Blood Purification 2011Vol. 32, No. 2
Foster G R - Quality Of Life Considerations for Patients with Chronic  Hepatitis C; Journal of Viral Hepatitis September 2009 Vol 16 Issue 9
Teuber G, et al. - Effects of Chronic HCV Infection on Health-Related  Quality Of Life and Fatigue: The Role of Liver Fibrosis Progression;  American Association for the Study of Liver Diseases 2007 meeting  Abstract 1330
Karaivazoglou K et al.- Fatigue and Depressive Symptoms Associated with  Chronic Viral Hepatitis Patients’ Health-related Quality of Life; Annals  of Hepatology Oct-Dec 2010 Vol 9, No 4
Strauss E, Teixeira, MCD - Quality of Life and Hepatitis C; Liver International September 2006 Vol 26 No 7
Marcellin P, et al. - Adherence to Treatment and Quality Of Life during  Hepatitis C Therapy: A Prospective, Real-Life, Observational Study;  Liver International April 2011 Vol 31 Issue 4
El-Kamary S, Jhaveri R, Shardell M - All-Cause, Liver-Related, and  Non–Liver-Related Mortality among HCV-Infected Individuals in the  General US Population; Clinical Infectious Disease July 2011 Vo 53 Issue  2