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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

  

 

TAKING A CHANCE AT LIFE:

ASSESSING THE BENEFITS AND DETRIMENTS OF HEPATITIS C TREATMENT TO DETERMINE WHEN IT IS MOST REWARDING TO UNDERGO TREATMENT

Honora Remak

Extended Essay

Project Teacher: Melodee Soczek

Technical Advisor: Jennifer Bender-Willis

November 29, 2004

Words: 3604

Winston Churchill High School,

International High School,

Eugene, Oregon

 

© Copyright 2004, Honora Rachel Remak.

 DEDICATED 

To my father, Bill Remak for the physical, mental endurance and love to persist in his quest to save his life and to help others survive liver disease and to his donor family that gave him the gift of life to continue that motivation. The miracles that the GI and transplant teams of the University of California, San Francisco perform on a routine basis are the best we could have wished for and I thank them with all my heart for giving my father back to me.

Abstract

Topic: Deciding when to undergo treatment for Hepatitis C through an assessment of the benefits and detriments

Research Question:

What are the benefits and detriments of hepatitis C treatment and when is it worthwhile to undergo treatment?

Method of Investigation:

            In order to have an adequate amount of information, both primary and secondary sources have been found.  Information has been taken from books (some textbooks), magazine articles, websites, and an interview (via e-mail).  An interview has been conducted with a patient.  The book, magazine, and internet sources are used mainly for background information which has provided the facts needed to form an argument, and the interview has been used to provide the personal aspect to the argument making it more concrete.  The patient has first hand experience making this decision and he offers a point of view that you cannot capture in text, the emotional reflections, quality of life and suffering I observed in my Dad, Bill Remak.

Introduction

            In 1999 approximately 170 million people were chronically infected with the hepatitis C virus, also known as HCV (Hagedorn and Rice, 2000).  My father was, and still is, among that population.  He believes that he contracted the hepatitis C virus when he was a teenager although it did not become active until he was in his mid thirties (This leads me to believe that HCV is a lysogenic virus such as HIV which first becomes a part of the host cell DNA/RNA before becoming active.  However, I have not found a single source that states this, so it is only an idea of mine.). One liver transplant and a number of treatments later and we find ourselves at the present day. 

            He is currently on a treatment that is commonly known as the pegasys treatment.  This treatment consists of a combination therapy of pegylated interferon and ribavirin.  The interferon is taken by injection once a week and the ribavirin is taken orally in the morning and at night each day.  The dosage of each is prescribed by the doctor and varies from patient to patient (Remak, 10/22/04).  During his treatment, he has suffered from side effects that have been noticeable by others, including myself.

            In order to obtain more knowledge in regards to his experiences, the following question will be asked, researched, and finally answered: 

What are the benefits and detriments of hepatitis C treatment and when is it worthwhile to undergo treatment?

            Hepatitis C affects the liver in serious ways and in chronic cases has caused cirrhosis and/or cancer.  There are many treatments available currently to help reduce and even cure hepatitis, but they have many side effects.  Also, the more resistive the genotype (1a being the greatest), the more resistant to treatment.  Those genotypes that are more resistant to treatment are less likely to respond with great efficacy. (Remak, 10/22/04).

            There are things to consider when choosing to undergo any treatment that may affect a patient’s quality of life, but it should not be ruled out as a possibility simply because of the detriments.  A patient must also consider the benefits of the treatment in the long term as well as the short term.  Although benefits and detriments of hepatitis C treatments need to be taken into consideration and a doctor consultation is necessary, it is worthwhile to undergo treatment as long as a patient feels that it is worth any obstacles they may have to overcome, or any problems they may endure.  If life is still worth living, then it is worth doing anything in a person’s power to fight for it.

What is hepatitis C?

            Hepatitis C is a liver disease that causes the liver to inflame (swell) and stop working correctly (NDDIC, What I need to know about hepatitis C).  The liver is the organ in your body that breaks down waste materials.  When inflammation of the liver occurs, the liver can no longer properly dispose of waste (Remak, 10/16/04).  The hepatitis C disease is caused by the hepatitis C virus that can be transmitted through blood contact with an infected person (NDDIC, What I need to know about hepatitis C).

            The hepatitis C virus is in the flavivirus family, which was declared a separate family in 1984.  The flavivirus genome consists of single stranded, linear, infectious, positive sense RNA.  The genome is also 11,000 nucleotides long and monopartite.  The virions of the flavivirus are about 40-60 nanometers in diameter, spherical in shape, and are surrounded by an envelope.  The envelope is small, but the surface appears rough or contains very distinct fringes in negative stains ( Oram, Classification and Taxonomy, 1998).

  

            “Hepatitis C induces persistent infection and high antibody in the chronically infected” ( Oram, Immune Response and Host Defenses, 1998).  The body’s immune system is unable to get rid of HCV because most of the virus is constrained in complexes of virus-antibodies.  The viral genome then produces a chronic carrier state by remaining in the liver for many years (Oram, Immune Response and Host defenses, 1998).  “But HCV does not overpower the immune system in all cases since the case fatality rate from fulminant hepatitis is less than 1%” (Oram,  Immune Response and Host Defenses, 1998).    

            The build-up of bilirubin, a waste product in the blood, occurs when a person has inflammation due to hepatitis C, and causes the skin of a person to become a yellow-orange color (Remak, 10/16/04).  “In chronic symptomatic HCV infection, fatigue is probably the most frequent complaint, the degree of which is unrelated to the severity of liver disease.  Other complaints include depression, nausea, anorexia, abdominal discomfort, and difficulty with concentration” (Remak, 10/16/04). 

            HCV complications are related to how long a person has been infected with the virus.  About 20% of people carrying HCV will not develop liver failure and/or cirrhosis until they have had the virus for about 20 years or so (Spolarich, Oct-Dec. 2003).  Most people do not show any symptoms of the hepatitis C virus until they have had it for 10-15 years and may not know until they have had it for over 20 years (McInnis, 2002).  “Since most hepatitis C patients are symptom-free, they may be infected for a decade or more without knowing it.  When symptoms emerge, they can be devastating- the consequences of a severely damaged liver” (Kenilworth, 2002).  Hepatitis C is currently estimated to infect 4 million Americans (that does not include the rest of the world), and is the leading cause of liver transplants in the United States.  Also, It is believed by experts that only one fourth of hepatitis C cases in the U.S. have been diagnosed (Kenilworth, 2002).  Out of all of the infected patients in the United States it is approximated that only 15% have been treated.  The total number of patients treated in the United States is decreasing each year also (Cecil, Hepatitis Doctor, 2004). 

            Hepatitis C also consists of a number of genotypes: 1a, 1b, 2a, 2b, 3, and 4.  The higher the genotype (1a being the highest and 4 being the lowest), the more resistant it is to treatments (Remak, 10/16/04).

            Patients do not have the same response to the hepatitis C virus.  How a patient became infected with hepatitis may affect how their body responds.  Patients that become infected with hepatitis through blood transfusion are more likely to get cirrhosis than those infected through injecting drugs.  Patients that are over fifty have a greater risk of getting cirrhosis than younger patients get.  If a patient has had hepatitis for over twenty years, they are more likely to develop cirrhosis.  When a patient drinks alcohol they increase their chances of having cirrhosis (Cecil, Hepatitis Doctor, 2004). 

            Hepatitis C affects the male and female bodies very differently.  Women are less likely than men to progress from acute hepatitis to chronic hepatitis are.  Therefore, women’s rate of spontaneous viral clearance is higher than that of men.  Women also tend to progress to cirrhosis less often than men do.  Studies show that women with hepatitis C have a five percent probability of progressing to cirrhosis, while men have a twenty to thirty percent chance of progressing to liver cirrhosis.  Men are also four times more likely to develop liver cancer from hepatitis C than women (Palmer, April-June, 2004). 

How is hepatitis C treated?

            There are numerous treatments currently used for hepatitis C.  Medicines currently available include interferon alfa-2a, interferon alfa-2b, interferon alfacon-1, a combination of interferon alfa-2b and ribavirin, interferon alfa-n (Remak, 10/16/04), and the two newer treatments of pegylated interferon (the peg.-intron treatment) and the combination of pegylated interferon and ribavirin (known as the pegasys treatment)(Remak, 10/22/04).   The older treatments are currently used mostly with genotypes 3 and 4 hepatitis because they are found to respond better with them than other genotypes.  The older treatments are also less expensive than newer treatments, so there is more of an incentive for people with genotypes 3 and 4 to use the older treatments since they still have a good response to them (Remak, 10/22/04).

            Interferon, used in every treatment of hepatitis C, is a group of proteins and glycoproteins that are produced by cells to prevent the growth of viruses (Taylor, 1985).  However, interferon's differ from other defense mechanisms in the body in that they are only active against viruses, and they do not do any thing to the viruses directly but rather activate the body’s own cells to resist the viruses (Curtis and Barnes, 1994).

            The most current hepatitis C treatments are both combination therapies consisting of pegylated interferon and ribavirin, and both have increased sustained response in comparison to older treatments.  The first is peg-intron plus ribavirin, which has a sustained response of 42% in genotype 1, and an 82%, sustained response in genotypes 2 and 3.  The second treatment, pegasys plus ribavirin, have a sustained response of 46-51% in genotype 1, and a 76-78% in genotypes 2 and 3 (Franciscus, Oct.-Dec. 2003). 

            Alpha interferon is made in the body naturally to respond to viruses.  This is one of the older forms of treatment for hepatitis C.  The newer, pegylated interferon is a chemically modified alpha interferon.  To pegylate interferon, a molecule of polyethylene glycol is added.  Pegylating interferon changes the uptake, distribution, excretion, and it prolongs its half-life.  Pegylated interferon can be taken just once a week and remain at a constant level in the blood while standard interferon has fluctuating levels even when taken multiple times in a week.  New pegylated interferon also has a higher sustained response with roughly the same side effects as standard interferon (NDDIC, Chronic hepatitis C: Current disease management).  Out of the two types of pegylated interferon, pegasys is much more tolerable than pegintron, but it is not any stronger (Cecil, Hepatitis Doctor, 2004).

           A study in Spain has shown that slow responders to the pegasys treatment with a dose of 180 mcg per week and 800 mg of ribavirin every day do better with a longer treatment period.  The standard length of treatment is forty-eight weeks, but these patients do better with a seventy-two week long treatment (Cecil, Hepatitis Doctor, 2004).

            Currently about half of patients respond to treatment.  Many patients that do respond to treatment will relapse when treatment is stopped.  Patients that have severe cirrhosis or fibrosis are more likely to relapse than other patients are.  However, fewer relapses occur with longer treatments.  Standard treatment is forty-eight weeks long, but for patients with cirrhosis or fibrosis a longer treatment is recommended to increase their chances at a sustained response.  Also, ribavirin helps prevent relapse, so combination therapy is recommended as well (Cecil, April-June, 2004).

            A Japanese herbal formula called Sho-saiko-to is being researched for the treatment of patients with cirrhosis.  In Chinese and Japanese cultures, Sho-saiko-to has been used for a number of years as a prescription medicine for chronic liver disease.  It is distributed throughout Japan (Hepatitis, April-June, 2004).

            In January a treatment was approved for children.  Before January there hadn’t been a hepatitis treatment for children infected through injecting drugs.  Patients that are over fifty have a greater risk of getting cirrhosis than younger patients.  If a patient has had hepatitis for over twenty years, they are more likely to procure cirrhosis.  When a patient drinks alcohol they increase their chances of acquiring cirrhosis (Cecil, Hepatitis Doctor, 2004). 

            Hepatitis C affects the male and female bodies very differently.  Women are less likely than men to progress from acute hepatitis to chronic hepatitis.  Therefore, women’s rate of spontaneous viral clearance is higher than that of men.  Women also tend to progress to cirrhosis less often than men do.  Studies show that women with hepatitis C have a five percent probability of progressing to cirrhosis, while men have a twenty to thirty percent chance of progressing to liver cirrhosis.  Men are also four times more likely to develop liver cancer from hepatitis C than women (Palmer, April-June, 2004). 

When should you get treated?

            There are two enzymes that are produced in a person’s liver that a doctor will need to monitor the levels of if they have hepatitis C.  If these enzymes reach a certain level, a patient’s doctor may choose to put them on hepatitis C medication.  It is generally difficult to make the decision to use interferon because of the expense and the side effects (Remak, 10/16/04).  “The most common side effect feels like having the flu.  Some people taking interferon have fevers, body aches, headaches, fatigue, irritability, nausea, vomiting, loss of sleep, sleep disturbance, or changes in their blood” (Remak, 10/16/04). 

            Side effects from interferon or pegylated interferon that occur in over ten percent of patients include fatigue, muscle aches, headaches, nausea and vomiting, irritation of the skin at the sight of injection, low-grade fevers, weight loss, irritability, depression, mild bone marrow suppression, and hair loss (NDDIC, Chronic hepatitis C: Current disease management).  Severe side effects are seen in less than 2% of patients.  Severe side effects include thyroid disease, depression with suicidal thoughts, seizures, acute heart or kidney failure, lung and eye problems, loss of hearing, and blood infection (National Center for Infectious Diseases, CDC).  Common side effects of ribavirin include anemia, fatigue and irritability, itching, skin rash, and nasal stuffiness, sinusitis, and cough (NDDIC, Chronic hepatitis C: Current disease management).  All of these side effects should be taken into consideration before choosing to be treated.  However, side effects will not occur with every patient.

  

            Since men and women are affected by hepatitis C differently, they are also affected differently by hepatitis C treatments.  On the positive side, women respond better to therapy with pegylated interferon and ribavirin causing them to become cured a greater percentage of the time than men did.  However, women tend to experience side effects more often than men do.  Women experience fatigue, headaches, depression, anxiety, irritability, and insomnia more frequently.  There are also many cosmetic side effects that aren’t necessarily more common in women, but women are more commonly concerned with them. 

            One side effect that women are concerned with is hair loss.  Most women believe that all of their Hair will fall out when they undergo treatment, but this is a myth.  Hair loss is normally minimal and rarely noticeable to others.  other side effects that concern women are brittle nails (constant splitting, cracking, or breaking) as well as constant nail biting (often a sign of interferon induced anxiety), skin problems (rashes, itching, and dry skin), dental problems (increased chances of tooth decay and cavities due to decreased production of saliva), and eye problems (dry, itchy, or blood shot eyes, burning eyes, impaired vision, blurred, or poor night vision, and blind spots) (Palmer, April-June, 2004). 

            The majority of people with chronic hepatitis C virus may never need to seek out treatment because serious disease progression does not occur.  Viral eradication, improvement in quality of life, and reduction in the speed of disease progression are all current goals of HCV treatments.  Decisions to undergo treatment should first be discussed with a doctor. Health status, existing disease progression, probability of response to medication, and the quality of life should all be considered when attempting to make this decision.  Since there are many side effects with current medications, it is favorable for patients with minimal disease progression to wait for better treatments with fewer side effects to become available.  This is because immediate treatment is not imperative.  However, someone with serious disease progression or a decrease in their quality of life should seek out treatment.  The one exception is the patients with genotypes 2 or 3 hepatitis C, since they have such a high response rate to treatment they might as well be treated (Franciscus, Oct.-Dec. 2003).

            Patients that are treated successfully can be cured of the viral infection.  To be a cured patient means to have a viral load of zero for the rest of the patient’s life.  A patient that is cured has a better prognosis over patients that have not been treated or that were not successfully treated.  The liver mortality rate for these patients is reduced and the appearance of the liver biopsy is improved.  Liver testes and other blood tests improve as well (Cecil, Hepatitis Doctor, 2004).

            For many patients that do become undetectable for the hepatitis C virus while on treatment, the virus is gone permanently.  Approximately 15% of people infected with hepatitis C are able to clear the virus from their bodies without having to take medication.  Patients like these have positive anti-HCV, a positive HCV RIBA, and a constantly negative HCV-RNA.  While some patients can clear the virus on their own, other patients do require treatment to be cured.  Roughly 10-20% of patients are able to be free of the virus with a single year of interferon treatment, and their HCV-RNA will remain negative six to twelve months after the conclusion of treatment.  Those that are cured from this treatment have been proven to remain cured for at least thirteen years.  About 40% of patients are able to clear their bodies of the virus with a forty eight week treatment of the interferon and ribavirin combination therapy, and their HCV-RNA is negative six months after finishing treatment.  These patients are not expected to a return of hepatitis C (Cecil, Hepatitis Doctor, 2004).

Conclusion

            The hepatitis C virus accounts for approximately 15% of acute viral hepatitis in the U.S., 60-70% of chronic Hepatitis, and as much as 50% of cirrhosis, end-stage liver disease, and liver cancer.  It also causes an estimated 10,000-12,000 deaths each year in the U.S. (NDDIC, Chronic hepatitis C: Current disease management).  People are currently trying to spread awareness of hepatitis C, and that is important, but those that are already infected do still have a chance.  There is the option of treatment for those diagnosed with hepatitis C and they need to be informed of this option and all that it may entail.  Yes, there are side effects, and, no, the treatment will not be easy, but it is still an opportunity to live when a patient may not have any chance on their own.   

            While there are things to consider when deciding whether or not to undergo treatment for hepatitis C such as side effects or the probability of it being successful, it does go much farther beyond that.  I remember a phone conversation between my father and me one day.  We were discussing his health.  He generally does not feel too well which is understandable, but he had been feeling worse than usual at that time.  We were discussing the side effects of his medication and how horrible he was feeling and, he said to me that it did not matter because he would take them anyway so that he could be around for my high school graduation.  That is a powerful statement to make, and it had an impact on me.  He was willing to go through everything that he went through for me.  It was important for him to be around for important things such as my graduation, and he would do anything for that opportunity.  

            It is one thing to have a person close to you have a deadly disease or illness. It is entirely different to be a person with a deadly disease or illness.  Those not experiencing the disease or illness directly will never entirely understand what the other is going through.  They have to be able to make important decisions on their own because they experience things that other people can not understand.  Regardless of who a person is, it simply comes down to this: knowing the facts, having looked at the statistics, and getting professional advice is helpful and it is important to consider, but in the end a patient has to go with what matters the most to them.  So, When is it worth it to undergo treatment for hepatitis C?  “When you still are motivated to fight your disease and survive at any cost and the option to get treatment is still available” (Remak, 10/16/04).   

Works Cited

Cecil, Bennet.  (2004).  Case by Case, Hepatitis, April-June. 

Cecil, Bennet.  (2004).  Hepatitis Doctor.  Retrieved: November 28, 2004, Bennet Cecil,        MD Inc.  Website:  http://www.hepatitisdoctor.com     

Curtis, Helena, and Barnes, Sue.  (1994).  Invitation to Biology: Fifth Edition.  New             York: Worth Publishers.

Franciscus, Alan.  (2003).  Fighting Words, Hepatitis, Oct.- Dec.

Hagedorn, C.H., and Rice, C.M.  (2000).  The Hepatitis C Viruses.  Berlin:    Springer-Verlag.

Hepatitis.  (2004).  In Brief, April-June.

Hepatitis Innovations.  (2002).  Retrieved November 21, 2004,

            Website: http://www.hepatitisinnovations.com 

McInnis, Vikki.  (2002).  Hepatitis C Virus.  Retrieved October 24, 2004, Website: http://hepatitis-central.com/hcv/whatis/whatishcv.html

National Center for Infectious Diseases.  (N/A).  What are the side effects of interferon         therapy?.  Retrieved October 24, 2004, CDC Website:        http://www.cdc.gov/ncidod/diseases/hepatitis/c/fag.htm#4f

National Digestive Diseases Information Clearing-House.  (2003).  Chronic Hepatitis C:         Current Disease Management.  Retrieved May 18, 2004,

National Digestive Diseases Information Clearing-House.  (2003).  What I Need to Know        About Hepatitis C.  Retrieved May 18, 2004, NIDDK

Oram, Valerie.  (1998).  Flavivirus: Classification and Taxonomy.  Retrieved October 23,   2004, Flavivirus Page

            Website:  http://www.stanford.edu/group/virus/flavi/flavivirus.html    

Oram, Valerie.  (1998).  Flavivirus: Immune Response and Host Defenses.  Retrieved          October 23, 2004, Flavivirus Page

            Website:  http://www.stanford.edu/group/virus/flavi/flavivirus.html

Interview: Remak, Bill.  10/16/04

Interview: Remak, Bill.  10/22/04

Spolarich, Audrey.  (2003).  Around the Nation, Hepatitis, Oct.- Dec.

Taylor-Papdimitriou, Joyce.  (1985).  Interferons: Their Impact in Biology and Medicine.     New York: Oxford University Press.