Chapter 22 Lorren Sandt |
| Introduction Hepatitis C is a major global health problem. The World Health Organization estimates that over 170 million people are infected with the hepatitis C virus (HCV) worldwide with 3 to 4 million people newly infected each year.1 Yet, hepatitis C is largely a preventable disease. Prevention requires multilevel education programs, rigorous efforts to protect the blood supply, and major intervention programs for at-risk populations such as intravenous (IV) drug users. Despite significant advances over the past decade in hepatitis C diagnosis and treatment, there is still far more we do not know about HCV than we do know. Research is being conducted on several fronts in the race to gain control over the virus. Advocates are working diligently to raise public awareness and provide information to the millions of people infected with HCV. Health care providers from all disciplines are looking for better ways to treat people living with hepatitis C. So, where do we go from here? Despite the fact that most new cases of hepatitis C are
preventable, the disease continues to spread globally. Many consider the
worldwide HCV prevalence rate to be grossly underestimated. For example,
current estimates for the United States do not include incarcerated
persons, homeless people, IV drug users, and probably many others who do
not participate in the mainstream health care system. Even if current
figures are underestimated, they are staggering in terms of the number of
people living with HCV, and clearly demand the attention and intervention
of public health professionals and advocates worldwide. The federal government is responsible for educating citizens of the United States about communicable diseases such as hepatitis C. The Centers for Disease Control and Prevention (CDC) is the principal agency managing this task. However to date, much of the HCV education and awareness in the U.S. has been accomplished not by governmental agencies, but through the many grassroots hepatitis C organizations and support groups around the country. Why is this the case? Hepatitis C is essentially an "unfunded epidemic," meaning neither the federal government nor the private sector has earmarked funds for combating this growing public health problem. Remarkably, many decision-makers are still unaware of the magnitude and severity of the hepatitis C epidemic currently threatening the health of hundreds of thousands of Americans. The seriousness of the HCV epidemic and the widespread suffering it is causing must become common knowledge if adequate funding to address this disease is to be obtained. Both government and private funding are desperately
needed to support HCV public awareness campaigns. Many grass roots
organizations that conduct the majority of hepatitis C education and
awareness programs are funded solely by monies from pharmaceutical
companies that manufacture drugs used to treat hepatitis C. While this had
caused some people to mistrust the provided information, without this
funding, public awareness about hepatitis C would be even less than it
currently is. Remarkable advances in medical research have been made during the past six decades. Each decade seems to bring advances even more rapidly than the one before. Computer technology has been an incredible boon to the advancement of medical research, especially with respect to viral illnesses. Computer modeling of viral genomes has allowed scientists to carefully target and attack specific patterns of viruses. As our knowledge increases and pieces of the puzzle are put in place, a more complete picture is revealed. We have learned a lot about HCV since it was first
identified in 1989. But we are far from having a thorough and complete
understanding of the virus. The factors that lead to persistent HCV
infection are still poorly understood as are many of the mechanisms that
contribute to disease progression, treatment response, and the
relationship of HCV to liver cancer. Until additional information is
available, we must do the best with what we have. We currently have
treatments that work for some, but not all people with HCV. Some
antiviral therapies offer the
possibility of viral clearance, but may cause
significant discomfort during treatment. Other therapies may improve
quality of life, but offer no potential for viral clearance. As we look to
the future, we hope for continued progress in both the treatment and
prevention of HCV. Every day, HCV researchers around the world ponder the same questions.
The ability of the hepatitis C virus to reproduce itself (a process called replication) is staggering. In one day, in one HCV-infected person, there may be more copies of the virus produced than there have been humans on Earth since civilization began! Considered another way, an HCV viral particle can replicate roughly 600-900 generations each year. By comparison, it is estimated there have been only 300 generations of humans on Earth since civilization began. The numbers are so large, it is almost impossible to comprehend them. Virologists (scientists who study viruses) generally believe characteristics of the hepatitis C virus are primarily responsible for the harm caused by chronic infection. However, many immunologists (scientists who study the immune system) conducting HCV research have a different thought. They believe limitations of the host's immune system are primarily responsible for the severe consequences some people experience in response to HCV infection. Western researchers are studying people who spontaneously clear HCV to identify regions of the virus particle that may be involved in triggering a specific and successful immune response. This work is providing potential targets for the development of vaccines that may be used to prevent or treat HCV infections. In the end, most HCV researchers agree that both
the virus and the host's immunological capabilities play a role in the
natural history of the disease in any given person. The federal government funds the majority of clinical and scientific research conducted in the U.S. Areas of HCV research currently being funded through the National Institutes of Health (NIH) include:
The use of complementary and alternative medicine (CAM) treatment approaches is common in many countries of the world such as China and India. CAM use is becoming increasingly popular in western countries as well. This is particularly true among people with hepatitis C. Frustrated by the inability of western medicine to uniformly clear the virus in all those who are treated, many people have turned to CAM therapies. Much of upsurge in interest in these therapies has been facilitated by easy access to information via the Internet. However, there are concerns about the use of CAM therapies among people with chronic hepatitis C. The National Center for Complementary and Alternative Medicine (NCCAM) was established by NIH in 1998. NCCAM's functions are:
NCCAM's vision is, "to advance research to yield insights and tools derived from CAM to benefit the health and well-being of the public, while enabling an informed public to reject ineffective or unsafe practices."2 Research to establish the safety and efficacy of various
CAM therapies for a variety of ailments is a priority for NCCAM.
Clinical trials are needed to
establish the actions of herbs and
nutritional supplements in the body. While NCCAM is conducting
research on some herbal therapies and other CAM practices, but they cannot
possibly look into all of the thousands of products currently available.
According to NCCAM, there has been only limited research on hepatitis C
and alternative treatments (see Figure 1).3 Figure 1: Amount of Rigorous Research About Hepatitis C
Product manufacturers and other proponents of CAM must get involved in funding clinical trials that will allow a more careful definition of the risks and benefits of these products and services. While it is important that medical research be scientifically sound, many people question the need for randomized, double-blind, controlled clinical trials for complementary therapies to establish reliable clinical information. Randomized, controlled trials are very costly and time-consuming. While it is true that research on CAM therapy can be a compromise, the same is also true of western research. The best information will come when there is true collaboration between CAM and western practitioners. Until research data are available on the
efficacy and safety of CAM approaches, few western doctors are willing to
recommend them. Often, people interested in using these approaches must
seek information on their own. Unfortunately, a significant amount of the
information available on the Internet and from other sources is
unreliable, inaccurate, and sometimes, deliberately misleading. The lack
of easily accessible and reliable information was the primary reason we
decided to write Hepatitis C Choices, to give people accurate
information upon which to base their treatment decisions. If you are
considering using CAM products, you should use the same precautions you
would with a prescription medicine. Just because a product is "natural"
does not mean it cannot harm you. If you intend to use CAM in your
hepatitis C treat approach, gather information from someone who is trained
and knowledgeable about CAM therapy. And always be sure to let all
your health care practitioners know about each and every product,
supplement, medication, and practice you are using. Can, should, or must we explore combining CAM and western treatments? Would this provide potentially less expensive and more effective treatments with better quality of life, not only for people in the U.S., but for the rest of the world's population as well? As we move forward in the 21st century, the general public, CAM practitioners, and western doctors are increasingly accepting the idea of integrative medicine. As CAM therapies and interventions are incorporated into western medical education and practice, the exclusionary term "complementary and alternative medicine" will hopefully be replaced with the more inclusive term "integrative medicine." A number of respected health care
institutions, medical schools, and teaching hospitals are setting up or
have already set up integrated medicine clinics. Some doctors-in-training
are being taught not only about western medical treatments, but also about
the many herbs, supplements, and other forms of treatment their patients
are using and/or requesting. Respected professionals from all medical
disciplines are talking, listening, and working together as colleagues,
much like the authors of this book. We hope that in the not too distant
future, integrative medicine will be seen as providing novel insights and
tools for whole-body health. Health care providers everywhere will
practice this new form of medicine after learning the numerous traditions
and disciplines that contribute to art of medicine and healing. Patient advocates play a major role in many areas of medicine. HCV advocates have been largely responsible for the hepatitis C public awareness and education programs that currently exist. They work in communities and in prisons. They work with the many military veterans who have been infected with HCV through infected blood transfusions for war injuries. They work with police and firefighters, and with IV drug users. They speak before Congress and state legislatures, appear on television, and reach out to other media outlets. They have been responsible for setting up testing sites where people can be screened for HCV free of charge. They are encouraging states to develop their own testing plans to help prevent the continued spread of this disease. They are organizing the development of community-based HCV task forces. Advocates are clearly a necessary and vital
component in the fight against HCV. But HCV is a huge problem; many people
are needed if we are going to continue to make strides for the good of all
those living with HCV. We encourage you to get involved with one or more
of your local HCV groups. Volunteer your time if you can. Just a few hours
a week can make a big difference. If there is no HCV group in your area
and you would like to start one, please give us a call (877-737-HEPC). We
would be happy to give you information about how to establish an HCV
advocacy group. If you do not have time to volunteer, you can still help
by writing your state and local representatives. Tell them you want
hepatitis C moved to the top of their agenda. Financial support is also
needed; public awareness campaigns, offering free or low-cost testing,
conducting educational programs, and all of the many other activities
advocates perform daily require funding. If you can help the HCV advocacy
community do its work through a financial contribution, we encourage you
to pick up the phone and call today to make your donation. Each and every day, HCV advocates hear stories from the community of people living with hepatitis C about the negative stigma associated with the disease. Stigmatization and prejudice are often based on two factors: ignorance and impersonalization or "facelessness." While people may have heard of HCV, many have little knowledge about the disease, or worse yet, have incorrect notions about the disease. Ignorance often leads to fear, which is expressed as prejudice. For example, a commonly held misconception is that you can "catch" hepatitis C through casual, day-to-day contact with someone who has HCV. Of course, this is not true. But someone who holds this mistaken notion may develop a prejudice toward people with HCV as a result of his or her unwarranted fears. This is just one example of how lack of knowledge can contribute to stigmatization. Impersonalization is also a factor in stigmatization and prejudice. It is often easy for us to hold onto judgmental thoughts about others when we think of them as a group, separate and distinct from ourselves. We often use phrases such as "those people" or "what they're like" when describing groups of people with whom we feel no sense of connection. Lacking a sense of connection, we are just a step away from forgetting the humanity we share with "those people." This type of "facelessness" can contribute to the stigmatization of people with hepatitis C. But such stigmatization often quickly fades when one realizes that "those people" are not separate, but are one's friends, neighbors, and loved ones. Understandably, the stigmatization associated with hepatitis C has caused many people living with the disease to remain silent. However, we've all heard the old adage and have certainly experienced it's truth at some point: "The squeaky wheel gets the grease." Becoming involved in the hepatitis C community by working with an HCV advocacy organization has many potential benefits:
The Caring Ambassadors Hepatitis C Program mission statement addresses the need to motivate the many HCV advocacy organizations to work together. In the summer of 2000, all the HCV advocacy groups were invited to participate in a meeting to determine if a collaborative approach would benefit people living with HCV. The meeting resulted in the formation of The National Hepatitis C Advocacy Council. Since the Council was formed, we have grown to a 19-member, national organization with three additional organizations on our advisory panel. The Council is a forum for discussing common goals and strategizing about ways to become a formidable national force to advance the issues of importance to all people affected by hepatitis C. The Council has established ethical guidelines for all participating groups. The Council's guidelines promote a better quality of life for people living with hepatitis C, and stress that all member organizations must act responsibly and provide accurate, unbiased information.
Much has been learned about hepatitis C, but there is still much we have yet to discover. For the vast majority of people, infection with HCV is not fatal. In fact, most people with HCV will not die from the virus, but with the virus. Given enough time and financial support from the government and private sectors, researchers will undoubtedly answer many of the questions nagging scientists today. How does the virus infect? Has western medicine really been successful in clearing the virus, or is it hidden in a reservoir somewhere in the body? Why do some people clear the virus on their own, while others develop a chronic infection with devastating consequences? Why does one form of treatment work for some and not for others? Even if all the scientific questions were answered tomorrow and effective treatments were available for everyone infected, there would still be hundreds of thousands of people worldwide who already have the disease, and hundreds of thousands more to whom it would be spread. Prevention is crucial if we want to achieve control of the spread of this disease. A critical need for information and education exists and will continue to exist for a very long time. We, as individuals and as organizations,
have the opportunity to play a pivotal role in putting the spotlight on
this slowly progressive, insidious, and potentially devastating disease.
It will take a concerted effort on the part of everyone involved -
researchers, government agencies, the private sector, patient advocates,
and the public at large - if we are to overcome this disease.
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Why do
some people infected with HCV develop 
Why do
some sustained responders to 