HCV Advocate Logo HCV Advocate Logo
Contact Us Site Map Resources en Espanol
For living Positivley. Being Well
About Hepatitis
News Updates
News Review
Conference Reports
News Articles
HCV Advocate Newsletter
Sign up for Email Updates
Community & Support
Resource Library
About Hcsp
HCV Advocate Newsletter

Back to Newsletters

August 2008 HCV Advocate

Download English printable version

Download Spanish printable version


HCC in Japan Declining
Alan Franciscus, Editor-in-Chief

Book Review - 100 Questions and Answers about Liver Transplantation A Lahey Clinic Guide
Alan Franciscus, Editor-in-Chief

Genotype 2/3 Treatment - How Much is Enough?
Liz Highleyman

HealthWise: Medical Mistakes
Lucinda Porter, RN

Disability & Benefits-Buying Health Insurance. If It Looks Too Good to Be True
Jacques Chambers, CLU

HCV Cell Culture
Alan Franciscus, Editor-in-Chief

HCV Advocate Eblast
Stay informed on the latest news ..click here to register for email alerts

Back to top

HCC in Japan Declining
Alan Franciscus, Editor-in-Chief

Among developed countries Japan has the highest incidence of hepatitis C-related hepatocellular carcinoma (HCC), or liver cancer, due to the high prevalence of hepatitis C – estimated at 2 million.  The HCV epidemic in Japan occurred at least several decades earlier than in other developed countries, such as the United States.  In the United States, it has been estimated that the annual incidence of HCV-related liver cancer is expected to rise to 11,185 in 2010, 13,183 in 2020, and 13,390 in 2030 before starting to decline in 2040 with 12,528 cases.  Understanding the increases and decreases in liver cancer numbers in Japan will give us a road map of the future incidence of  HCC in the United States, but there are some important differences between Japan and the United States that will affect the overall decline in the incidence of HCC in this country.  Still, the study results from Japan are very encouraging.

A paper titled “Declining Incidence of Hepatocellular Carcinoma in Osaka, Japan, from 1990 to 2003,” by H.  Tanaka and colleagues, was published in the Annals of Internal Medicine.  The paper documents the rise and fall of HCV-related HCC in 63,862 patients who were diagnosed between 1981 and 2003, including 5253 HCV-positive patients with HCC diagnosed between 1990 and 2003 at 10 hospitals. 

The age-standardized incidence rate of HCC in men increased between 1981 and 1987 from 29.2 to 41.9 cases per 100,000 persons.  The cases between 1988 and 1995 fluctuated, but a steady decline to 24.0 cases per 100,000 persons was observed between 1996 and 2003.  In women, the age-standardized incidence rate of HCC between 1981 and 1996 increased from 6.6 to 10.8 cases per 100,000 persons and gradually decreased to 7.3 cases per 100,000 persons in 2003. 

Implications for the U.S.:
While we should see some declines in HCC in 20 to 30 years, the rates will most likely not be as dramatic as the decreases seen in Japan.  The major difference between the United Sates and Japan is that Japan has a universal healthcare system that the government strictly regulates to control medical costs.  This means that more people have access to testing, medical management and treatment than people in the United States.  Also, in 2002 Japan began a nationwide, community-based screening of HCV, targeting people between the ages of 40 to 70 – the age group that was at the highest risk for having HCV.  The diagnosis, management and treatment of HCV are important factors related to the dramatic decrease in HCC in Japan.  Sadly, these types of disease prevention strategies have not been implemented in the United States. 

Ann Intern med.  2008;148:820-826

Back to top

Book Review: 100 Questions and Answers about Liver Transplantation – A Lahey Clinic Guide
Alan Franciscus, Editor-in-Chief

One issue that many of us do not want to think about is liver transplantation.  The obvious reason is that we don’t want to face the idea that we may need a liver transplant.

In the vast majority of cases, people living with hepatitis C will never have to deal with a liver transplant since only a minority of people with HCV will develop serious liver disease progression.  However, as the saying goes – knowledge is power and learning about the process of liver transplantation should alleviate many of our fears.  Part of the problem is that there is very little information out there that is easy to understand and doesn’t scare the heck out of us.  To help people understand this issue and many other health-related issues, the Lahey Clinic has produced a number of books on topics such as hepatitis C, liver transplantation, and liver cancer that are easy to understand and which answer many of the common questions that we all have about a particular disease or procedure.  One such book is 100 Questions & Answers about Liver Transplantation, by Fredric D. Gordon, MD, which provides detailed information about what you can expect before, during and after undergoing a liver transplant.  Importantly, this guide is helpful because it was written for the lay person in a way that is easy to understand and does not ‘talk down’ to people.  It is also important to note that this guide is about any cause of liver disease including, but not limited to, hepatitis caused by alcohol abuse, and viruses. 

The topics are divided into ten parts including: 

The Basics:  The liver and the functions of the liver, causes and complications of cirrhosis and when a person would need to have a liver transplant.

Before Transplantation:  The criteria for receiving a transplant, reviewing different transplant programs (long-term survival, patient care before and after the transplant), questions to ask transplant specialists, description of  types of livers used for a transplant, getting help and support, money concerns, the evaluation process, and a brief discussion of the MELD scoring system. 

Organ Allocation:  What is UNOS (United Network of Organ Sharing)?  More information on the MELD scoring system including an overview of the waiting list procedure, and the usual wait time before receiving a new liver. 

Preparing for Transplantation:   The various steps needed to prepare for liver transplantation, including information on diets, drugs and herbs to avoid, and being ready to respond to THE call informing a person of an available liver.

Surgery:  The actual transplantation procedure, the hospital stay, and any potential complications of surgery. 

Recurrent Liver Disease:  Answers to questions about the liver becoming re-infected with hepatitis C, and, when this happens, what the guidelines are for treatment of  HCV in the newly transplanted liver. 

Expectations:  Information about what happens after leaving the hospital and what steps to take to ensure the best possible outcome, plus information about everyday life and the likely improvement in health.   

Medications:  Details about the many medications to take both short and long term, with a focus on immunosuppressive drugs that are needed so that the body doesn’t ‘reject’ the new organ. 

Complications:  Descriptions of the possible complications of a liver transplant including organ rejection, risks for general infections, and the effects of long-term use of immunosuppressive drugs.

Living Donor Liver Transplantation:  An overview of the process of receiving a partial live liver transplant. 

Overall this book is a wonderful overview of the entire process and will hopefully help people understand the complex process of liver transplantation, and, more importantly, reduce some of the fear that people have about this issue.

Back to top

Genotype 2/3 Treatment - How Much is Enough?
Liz Highleyman

In late June, the European Commission—which performs a drug approval role similar to that of the U.S. Food and Drug Administration (FDA)—gave the green light to a shortened 16-week course of pegylated interferon alfa-2a (Pegasys) plus ribavirin for selected patients with genotype 2 or 3 chronic hepatitis C who have characteristics that predict good treatment response.

The standard duration for interferon-based therapy is 24 weeks for people with HCV genotypes 2 or 3, and 48 weeks for those with difficult-to-treat genotype 1; genotype 4 has been less extensively studied, but most experts recommend 48 weeks.  The longer course has been advised for HIV/HCV coinfected individuals regardless of genotype.

Standard drug doses are 180 mcg/week of Pegasys or 1.5 mcg/kg/week of pegylated interferon alfa-2b (PegIntron).  The usual recommended dose of ribavirin—which helps prevent relapse after completing treatment—is 800 mg/day for people with genotypes 2 or 3, and 1,000-1,200 mg/day (adjusted based on body weight) for those with genotype 1. 

However, because combination therapy is costly and often leads to difficult side effects such as depression and anemia, researchers have explored whether shorter treatment durations or lower drug doses might produce equivalent benefits with fewer drawbacks. 

Predictors of Favorable Response
In recent years, a growing body of evidence has clarified several factors that predict good response to treatment.  Some of these are demographic characteristics, including female sex and non-black race/ethnicity (data on comparative response rates for Latinos and Asians have been mixed). 

Individual variations in the speed of response to therapy also play an important role, as people who suppress viral load (HCV RNA) to an undetectable level by week four (rapid virological response, or RVR) are much more likely to maintain this response six months after completion of therapy (sustained virological response, or SVR).  More recent research indicates that response during the first week—or even the first day—appears to predict who will ultimately achieve a cure.

Other factors are related to the virus itself.  HCV genotype is one of the strongest predictors of favorable response, with genotype 2 or 3 patients significantly more likely to achieve SVR than those with genotype 1.  Lower baseline viral load before starting treatment also predicts a greater likelihood of long-term sustained response.

The recent European Commission approval allows for shortening treatment from 24 to 16 weeks for individuals with genotypes 2 or 3 who have low pretreatment viral load and undetectable HCV RNA after four weeks of combination therapy.  In announcing the approval, Pegasys manufacturer Roche said that the change will provide selected patients with “the full benefits of therapy while reducing unnecessary drug exposure.”  The abbreviated treatment duration has not yet been approved by the U.S. FDA.

What Does the Research Show?
The European approval was based on data from several studies indicating that shorter treatment duration leads to high sustained response rates in genotype 2 or 3 patients.  In an early randomized study of 283 Italian participants, for example, Alessandra Mangia and colleagues found that among individuals treated with 1.0 mcg/kg/week PegIntron plus 1,000-1,200 mg/day ribavirin, 12 weeks was as effective as 24 weeks (SVR rates of 77% vs. 76%, respectively), but fewer people in the short-duration arm experienced adverse events and stopped treatment for this reason. 

In the large international ACCELERATE trial, Mitchell Shiffman and colleagues evaluated the efficacy and safety of 16 or 24 weeks of 180 mcg/week Pegasys plus 800 mg/day ribavirin in 1469 genotype 2 or 3 patients.  On the whole, the study failed to demonstrate that the 16-week regimen was non-inferior to the longer course.  SVR rates were 62% vs.  70%, respectively, while relapse rates among individuals who achieved an end-of-treatment response were 31% vs. 18%, respectively.  However, among participants with low pretreatment viral load (400,000 IU/mL or less), SVR rates were comparable in the 16-week and 24-week arms (82% vs. 81%).  And among people with undetectable HCV RNA at week four, SVR rates in the two duration arms were also statistically similar (79% vs. 85%).

If 16 weeks is adequate for selected patients, what about even shorter treatment durations?  Olav Dalgard and colleagues assessed 14 versus 24 weeks of 1.5 mcg/kg/week PegIntron plus 800-1,400 mg/day ribavirin in 298 treatment-naive genotype 2 or 3 patients in the Scandinavian North-C trial who achieved RVR at week four.  As reported in the January 2008 issue of Hepatology, SVR rates were 81% and 91%, respectively, in an intent-to-treat analysis.  “We cannot formally claim that 14 weeks of treatment is non-inferior to 24 weeks of treatment,” the investigators concluded.  “However, the SVR rate after 14 weeks of treatment is high, and although longer treatment may give slightly better SVR, we believe economical savings and fewer side effects make it rational to treat patients with genotype 2 or 3 and RVR for only 14 weeks.”  

In another recent Scandinavian study, described in the June 2008 issue of Hepatology, Martin Lagging and colleagues randomly assigned 382 genotype 2 or 3 patients to receive 180 mcg/week Pegasys plus 800 mg/day ribavirin for either 12 or 24 weeks.  Overall, 12 weeks was inferior to 24 weeks, with SVR rates of 59% and 78%, respectively.  But shorter treatment was adequate for individuals younger than 40 years—especially if they had undetectable HCV RNA on day 29—and for older patients who had undetectable viral load on both day seven and day 29.  Pegylated interferon plus ribavirin for 12 weeks “is overall inferior” to 24 weeks, the investigators included, but the short course “may be useful in some patients with a rapid initial clearance of virus.”

Hidenori Toyoda and colleagues in Taiwan reduced treatment duration even further, randomly assigning 32 genotype 2 rapid responders to receive pegylated interferon plus ribavirin for either eight or 24 weeks.  Only 33% of participants in the eight-week arm achieved SVR, compared with 82% in the standard-duration arm.  The investigators concluded the eight-week regimen “yielded an increase in the relapse rate, indicating the limitation of a reduction of treatment below 12 weeks.”

Some research suggests that the effect of treatment duration may differ in people with genotype 2 compared with genotype 3.  Michael von Wagner and colleagues from Germany analyzed 153 genotype 2 or 3 patients treated with 180 mcg/week Pegasys plus 800-1,200 mg/day ribavirin; those with HCV RNA below 600 IU/mL at week four were randomly assigned to receive therapy for 16 or 24 weeks.  Overall SVR rates were similar: 82% in the 16-week arm and 80% in the 24-week arm.  But among genotype 3 patients, those with a high pretreatment viral load (more than 800,000 IU/mL) were significantly less likely to achieve SVR than those with a lower viral load (59% vs.  85%, respectively).  The researchers concluded that while 16 weeks is sufficient for individuals with genotype 2, those with genotype 3 and a high baseline viral load may need longer treatment.

Two other recent studies looked at reduced doses of pegylated interferon or ribavirin.  As described in the May 28, 2008, advance online Journal of Viral Hepatitis, Ola Weiland and colleagues analyzed 100 genotype 2 or 3 patients treated with low-dose 135 mcg/week Pegasys plus 11 mg/kg/day ribavirin for 24 weeks.  After four weeks, 70% experienced RVR, and 85% went on to achieve a sustained response.  The investigators concluded that the lower pegylated interferon dose “was sufficient for treatment of genotype 2 and 3 chronic hepatitis C,” and “may be cost-saving.”

In a related study, published in the June 2008 issue of Hepatology, Peter Ferenci and colleagues with the Austrian Hepatitis Study Group assessed the efficacy and tolerability of a half dose of ribavirin in genotype 2 or 3 patients.  A total of 282 treatment-naive participants were randomly assigned to receive 400 or 800 mg/day fixed-dose ribavirin plus 180 mcg/week Pegasys for 24 weeks.  SVR rates were similar in the low-dose and standard-dose arms, at 64% and 69%, respectively.  But while the rates were comparable for genotype 3 patients (64% vs.  68%), there was a greater disparity among those with genotype 2 (56% vs. 78%). 

If shorter therapy and lower doses are adequate for rapid responders, might more intensive therapy help patients with slow initial response? At the 2007 European Association for the Study of the Liver (EASL) meeting, Bernard Willems and colleagues presented a retrospective analysis showing that  genotype 2 or 3 patients who did not experience RVR at week four were significantly more like to achieve SVR if they were treated for 48 rather than 24 weeks, and if they received 1,000-1,200 mg/day weight-based ribavirin rather than 800 mg/day.  Those treated for 24 weeks with the lower ribavirin dose had an SVR rate of 67%, compared with 76% for those who received longer therapy with the higher dose; among rapid responders, however, neither longer treatment duration nor higher ribavirin dose were beneficial.  Research in this area is ongoing, including Roche’s new NCORE trial, which will assess 48 weeks of combination therapy for genotype 2 or 3 patients without RVR (www.clinicaltrials.gov/ct2/show

Benefits for Some, but Caution is Warranted
The European approval of abbreviated treatment for certain people with HCV genotypes 2 or 3 represents a step toward individually tailored response-guided therapy.  But shortening therapy and lowering drug doses (for reasons other than unmanageable side effects) is not without risk, and should not be done routinely.  This strategy is only appropriate for carefully selected patients who have a high likelihood of achieving sustained response.  While less intensive therapy is tempting, careless reduction may lead to inadequate HCV suppression or viral rebound, which can allow liver disease progression and may necessitate a renewed attempt at treatment.


  • Dalgard, O. et al.  Pegylated interferon alfa-2b and ribavirin for 14 versus 24 weeks in patients with hepatitis C virus genotype 2 or 3 and rapid virological response.  Hepatology 47(1): 35-42.  January 2008. 
  • Lagging, M. et al.  Randomized comparison of 12 or 24 weeks of peginterferon alpha-2a and ribavirin in chronic hepatitis C virus genotype 2/3 infection.  Hepatology 47(6): 1837-1845.  June 2008. 
  • Mangia, A. et al.  Peginterferon alfa-2b and ribavirin for 12 vs. 24 weeks in HCV genotype 2 or 3.  New England Journal of Medicine 352(25): 2609-2617.  June 23, 2005. 
  • Shiffman, M.L. et al.  Peginterferon alfa-2a and ribavirin for 16 or 24 weeks in HCV genotype 2 or 3.  New England Journal of Medicine 357(2): 124-134.  July 12, 2007.
  • Toyoda, H. et al.  Eight-week regimen of antiviral combination therapy with peginterferon and ribavirin for patients with chronic hepatitis C with hepatitis C virus genotype 2 and a rapid virological response.  Liver International.  April 1, 2008 (epub ahead of print). 
  • Von Wagner, M. et al.  Peginterferon-alpha-2a (40KD) and ribavirin for 16 or 24 weeks in patients with genotype 2 or 3 chronic hepatitis C.  Gastroenterology 129(2): 522-527.  August 2005.
  • Willems, B. et al.  Should treatment with peginterferon plus ribavirin be intensified in patients with HCV genotype 2/3 without a rapid virological response? 42nd Annual Meeting of the European Association for the Study of the Liver.  April 11-15, 2007.  Barcelona, Spain.

Back to top

HealthWise: Medical Mistakes
Lucinda Porter, RN

Henry,1 a 50 year old man with chronic hepatitis C infection (HCV), went to a well-known hepatologist.  This specialist told Henry that he had cirrhosis and needed immediate treatment.  Henry and his family were scared, thinking he was going to die soon. 

Henry attended an HCV support group.  He reported that Dr.  X was convinced that Henry had cirrhosis and did not want to perform a liver biopsy because of the increased risk associated with cirrhosis.  Dr.  X was adamant about the need for HCV treatment and Henry did as he was told.

For 18 months, Henry was on some combination of HCV medications.  Like most patients, he experienced uncomfortable side effects.  Henry was extremely fatigued, depressed, had no appetite, and lost a lot of weight.  Everything ached and he couldn’t work.  Mostly, Henry was scared.  However, he never gave up and faithfully followed his doctor’s orders.  If courage is the ability to prevail in the face of fear, then Henry was as brave as they come.

Eventually one of the side effects was severe enough to require hospitalization.  After nearly two years from the date Henry was diagnosed with cirrhosis, Dr.  X referred him for a liver transplant evaluation.  The transplant physician did not think Henry had cirrhosis.  The two physicians argued until finally Henry had a liver biopsy. 

Here is the kicker – Henry did not have cirrhosis.  In fact, his liver was in excellent condition.  Although this was good news, Henry was justifiably angry.  For two years he thought he was dying.  For 18 months, Henry endured treatment.  One could argue that the treatment had healed his liver, but his doctors did not spin it that way.  In short, the initial doctor made a mistake.

Physicians are human.  They make mistakes.  This is true for all doctors – even the best.  Nurses, pharmacists, surgeons – everyone makes mistakes.  The Institute for Healthcare Improvement estimates that annually in the U.S.  there are 15 million incidents of medical harm during hospital admissions.  This figure does not include mistakes that occur outside of hospitals or mistakes that do not cause measurable harm. 

The Institute of Medicine estimates that deaths due to medical errors range between 44,000 and 98,000 every year.  Some sources estimate the death rate to be over 200,000.  This places medical error in the top 10 causes of death.  This dubious distinction significantly outranks HCV-related deaths. 

Medical errors are avoidable.  Hospitals and medical groups have launched prevention campaigns to address this issue.  However, there is no better insurance than being informed and proactive about your own medical care.  Whether the problem is HCV or medical errors, we need to do everything we can to protect ourselves.  The good news is there is plenty we can do.

Start by speaking up.  Be your own advocate.  Don’t let fear stop you from asking questions.  You paid for the appointment and you are the consumer.  Ask for clarification or more information about any uncertainty. 

This isn’t easy for everyone to do, especially those who aren’t feeling well.  Ask a friend or family member to be your advocate, particularly if you are sick, taking certain medications or under anesthesia.  Have them take notes for you.  Some patients tape record their medical visits. 

Being assertive does not mean being impolite.  The adage about honey catching more flies than vinegar is true even in healthcare.  Doctors and nurses work hard and under stressful conditions, so a little kindness goes a long way. 

An important prevention measure is seeking second opinions.  Do this for all surgical procedures, significant health problems, and any time you have concerns about the medical care you are receiving.  Most physicians welcome second opinions.  Think twice about working with a physician who discourages you from seeking a second opinion. 

One of the reasons that Henry didn’t seek a second opinion is that Dr.  X seemed so confident about the diagnosis.  However, certainty does not equal competence.  Just because someone seems sure doesn’t mean they are right. 

Medication errors are the most common mistakes.  These are usually avoidable and it may help if you do the following:

 • Maintain written copies of allergies, prescription and nonprescription medications, and supplements you are taking.  Keep a copy in your wallet.  Give a copy to every doctor you see and one to the hospital upon admission.  Keep a copy by your hospital bed.
 • If you have a choice of hospitals, choose one that uses a computerized or bar-coding drug dispensing system. 
 • Do not take a medication that looks unfamiliar without first verifying it with the pharmacist.  If a nurse gives it to you, ask “What is this and why am I taking it?”  Have the nurse double-check any medications you have questions about. 
 • Make a copy of your prescription before you give it to the pharmacy.  Fill all your prescriptions at the same pharmacy. 
 • Check drug interactions of all supplements, prescriptions, and over-the counter drugs at www.drugs.com/drug_interactions.html

Here are other suggestions to help minimize your risk of exposure to medical mistakes:
 • Complete Advance Directives.  Appoint someone to make medical decisions on your behalf should you be unable to.
 • Keep records and notes.  For instance, if you are hospitalized, write down the names of medical personnel, medications and the time you took them, and other pertinent information. 
 • Know who will be performing any surgical procedures.  If a procedure takes place in a teaching hospital, ask if a resident will be doing it.  Residents rotate in July, so ask how long the resident has been performing the procedure.  If you are having an elective procedure, it may be better to have it done in June than in July.
 • Investigate your doctor’s and hospital’s ratings.  (See Resources)
 • Make sure that medical personnel wash their hands before they examine you and wear gloves during procedures. 
 • Be especially vigilant about medical care received during the night.  More mistakes occur then. 

Although this may seem frivolous, a good way to protect yourself is to get well and out of the hospital.  This step has to be done safely and under medical supervision.  If you are allowed to get out of bed, then do so.  Walk the corridors as soon as it is medically safe.

It is hard to think straight on an empty stomach.  If the hospital’s food is not up to your liking, ask people to bring in nutritious food.  First, see if the doctor ordered a restricted diet and eat food that follows those restrictions. 

The best protection from medical errors is to avoid getting sick.  Naturally, this is impossible, but we do have some control over our health.  You know the drill – wash your hands, exercise, eat right, wear your seat belts, keep current on immunizations, etc.  As Benjamin Franklin put it, “An ounce of prevention is worth a pound of cure.”  We can’t be perfect, but we can make a good attempt.  Even Franklin didn’t follow his own advice perfectly.  Flying a kite during a storm sure doesn’t sound safe to me.  

1Name and identifying details have been changed

 • Agency for Healthcare Research and Quality’s Twenty Tips to Help Prevent Medical Errors.  www.ahrq.gov/consumer/20tips.htm

 • Angie’s List – Includes medical personnel ratings. www.angieslist.com/AngiesList

 • HealthGrades – Provides some useful information about physicians and hospitals, but charges a fee for in depth reports.  www.healthgrades.com

 • Institute for Healthcare Improvement – This organization is dedicated to improving healthcare.  www.ihi.org

 • IPRO – Click on the “Consumer” tab for all sorts of information relevant to healthcare consumers.  http://providers.ipro.org

 • National Guideline Clearinghouse – Provides summaries of many medical procedures.  www.guideline.gov/resources/guideline

 • National Patient Safety Foundation – Presents general information related to patient safety.  www.npsf.org

 • The Joint Commission – This organization accredits and certifies more than 15,000 healthcare facilities; provides information about specific facilities. www.qualitycheck.org

 • U.S.  Department of Health and Human Services – Limited but useful information about hospitals.  www.hospitalcompare.hhs.gov

 • U.S.  Living Will Registry –This website is devoted to the issue of advance directives and provides links to other useful information.  www.uslivingwillregistry.com

 • Vitals - Gives information about physicians, although the patient rating sections are not necessarily reliable.  http://vitals.com


Vote Health
The National Coalition on Healthcare’s website reports the following: “Studies estimate that the number of excess deaths among uninsured adults age 25-64 is in the range of 18,000 a year. This mortality figure is more than the number of deaths from diabetes (17,500) within the same age group.” (Source: Institute of Medicine, Insuring America’s Health - Principles and Recommendations, The National Academies Press, 2004.)

Health is now a political issue. Do you know the healthcare reforms proposed by John McCain and Barack Obama?




Back to top

Disability & Benefits: Buying Health Insurance: If It Looks Too Good to Be True
Jacques Chambers, CLU

Too many people who attempt to buy health insurance have a medical condition or conditions that prevent them from getting mainstream health coverage.  In most states, a person trying to purchase individual or family health coverage will be asked about their health history and medical condition.  People dealing with HCV will inevitably be declined for such coverage. 

If you are in such a position you may be willing to look at programs that aren’t that familiar or well known.  The internet makes it easier to search much further than before.  Unfortunately, a wide search can bring up a lot of trash, plans that will not help you as much as they will help the people collecting your premium payments. 

Many of the plans you will be attracted to will promise to accept you for coverage regardless of your medical condition AND agree to cover all pre-existing conditions.  That should be your first warning sign. 

Some of these plans look very appealing; or more accurately sound very appealing.  The people handling the telephone inquiries are trained to say what you will want to hear; however, such plans need to be carefully studied before purchasing.  Chances are the actual plans are not as broad as the sales person claims. 

There are two main types of plans being touted as available to everyone.  The first type is the Discount Card.  These plans purport to offer huge discounts at thousands of hospitals and doctors’ offices.  They even promise to dramatically reduce what you pay for prescriptions.  The problem with these is that the discounts offered are not enough to really help given the cost of medical care today.  What is the point of getting 35 – 60% off a $45,000 hospital stay of three or four days?  Odds are that as an uninsured patient, you would be able to negotiate a reduction of that size or even more. 

And when these plans claim that medical bills are reduced by 50 or 60%, they never say what fee that reduction is based on.  There are more levels of medical fees by doctors, hospitals and pharmacists than there are airline rates.  Not one plan I have examined was able to say how they arrived at the discounts they claim. 

The best way to recognize a discount card when it is being sold is to note that the word “insurance” is never on any literature or ID card.  They may be called Plans or Health Plans or Medical Plans, but they will never be called Health Insurance Plan. 

Another common type of plan that is being hustled (and I use that term intentionally) to people that couldn’t otherwise purchase individual or family health insurance is the Uninsured Trust.  These can be more difficult to spot because their schedule of benefits will often appear to be quite broad.  You will also never see the label, “Uninsured Trust” on any of their literature.  These plans are usually “sponsored” by a union or association or other type of organization which “you are permitted to join just to get the insurance” without any requirement other than paying the upfront membership fee. 

Some marketers will claim their product is insured, when there is only partial protection or reinsurance provided.  It doesn’t change the fact that most such trusts rarely pay what they promised and many eventually go broke.  Ask if they are “fully insured” and by whom.

Many of these plans will market their coverage as if they were broad major medical plans when, upon closer review, they severely limit benefits to scheduled maximums.  There will be dollar limits on hospital stays such as $300 or $500 per day.  Even a plan that pays $1,000 per day in a hospital will not be enough to cover the bill in most facilities, especially in Intensive Care rooms. 

Surgery benefits and doctor’s visits are usually provided only through a very limited scheduled benefit.  Coverage under such plans is severely limited in all areas whether in-patient or out-patient. 

Keep in mind that it is virtually impossible to prove fraud based on statements made by the marketer over the phone or even in person.  A spokesperson for the California Department of Insurance noted that they find it very difficult to hold plans to what was promised orally; however, they carefully review all printed material to make sure it does not contain fraudulent statements.  It is for this reason that some online marketers will refuse to provide any written literature until the buyer actually buys the coverage.  Don’t believe anything you are told until you see it in writing. 

Aren’t these plans better than nothing if no “reputable” health insurance plan will accept you?  Probably not.  You’re better off banking those premium dollars.  Keep in mind these plans are designed to make a profit for their owners.  If they accept anyone regardless of medical condition, if they charge rates that are well below market rates, then they must be getting their profit by limiting benefits severely. 

How can you avoid such plans, especially when they seem to be the only plans willing to accept you with your medical condition? There are several things that should make you suspect the plan is not all it’s claimed to be:

1. Most importantly, do NOT do business with any marketing group or health plan that refuses to provide written literature showing the coverage, all limitations and exclusions, and the carrier who fully insures the plan. 

2. If you are not familiar with health insurance coverage, review any plan you find with someone who is. 

3. Ask if the plan is “fully insured” and if so, by whom. 

4. Be cautious if you must join a union or association to get the insurance.

5. Watch out for plans that charge the same rate for everyone regardless of age or geographical location.  While it sounds fair and equitable, it is against the basic principal of insurance. 

6. Understand that no medical discount card/plan can approach the financial assistance that most people need when it comes to medical bills. 

7. If benefits are limited by dollar amounts, schedules or drug formularies make sure you review them with your own specific needs in mind. 
After over forty years in the health insurance business, I believe I can confidently tell you that there are no hidden plans out there with wonderful benefits at a bargain rate that accept anyone regardless of health.  Rather than throw good premium dollars after these products, you would be better served to look at other ways to get good health insurance, through an employer, through government backed guaranteed plans which vary state by state, or possibly even through the two largest insurance plans of all, Medicare and Medicaid. 

Be sure to check out the other articles on the HCV Advocate website that address the issue of getting insurance after being diagnosed with HCV.  http://www.hcvadvocate.org/hepatitis/

Jacques Chambers, CLU, and his company, Chambers Benefits Consulting, have over 35 years of experience in health, life and disability insurance and Social Security disability benefits.  For the past twelve years, he has been assisting people with their rights, problems, and other issues concerning benefits and disability.  He can be reached at jacques@helpwithbenefits.com or through his website at: http://www.helpwithbenefits.com.

HCV Cell Culture
Alan Franciscus, Editor-in-Chief

Up until now, the only cell culture available to grow the hepatitis C virus has been the Huh-6 systems that are derived from hepatocellular carcinoma cells (liver cancer). The current culture has had limited use because it can only be infected with synthesized or cloned hepatitis C virus, and less than 15% of the sera is found to be infectious. In addition, the amount of the cultured virus starts to decline after 8 days, and can only be grown in liver tumor cells. Due to the limited applications of the current cell culture we have not been able to understand the entire HCV lifecycle, what kills HCV, and this has limited the development of new agents to treat HCV.

That is until now – a researcher, Martina Buck, from the University of California, San Diego School of Medicine has developed the first tissue culture from naturally occurring human liver cells that allows for direct infection with HCV genotype 1, 2, 3, and 4 from the blood of HCV infected patients.

“This is the first efficient and consistent model system for HCV to be developed,” Dr. Buck, University of California, San Diego, was quoted as saying. “There is a need for new treatments, and for development of a possible vaccine for HCV. Now we have a model system to support work by investigators in this area” (PLoS ONE, published online July 15, 2008).

The development of a naturally occurring tissue culture that scientists can use will revolutionize the field of HCV research by helping us to understand the entire lifecycle of the hepatitis C virus, the affect of HCV on liver cells, and what agents will kill HCV. But the biggest advance will come with the ability to develop more medications to treat hepatitis C.

Back to top

Back to Newsletters

About Hepatitis | News Updates | Community & Support | Resource Library | About HCSP | Contact Us | Site Map | Recursos en Español | Home

Hepatitis C Support Project
(C) 2008. Hepatitis C Support Project

Medical  Writers' Circle
Fact Sheets