Sunday, October 24, 2010

Part Two: Hey, I Have A Question About HCV Tests And My Liver

Part Two: A digest of questions most often asked by patients
.Q Why do most persons remain chronically infected with HCV?

A A person infected with HCV mounts an immune response to the virus, but replication of the virus during infection can result in changes that evade the immune response. This may explain how the virus establishes and maintains chronic infection.

Q In A HCV Blood Test what does an indeterminate result mean?
A It means a laboratory could not confirm the presence of Hepatitis C antibodies in a particular blood sample. It could mean that an individual may be in the process of converting from being negative to being positive. It could also be due to other medical factors. In either case, it is recommended that the individual be re-tested.

Q Under what circumstances is a false-positive anti-HCV test result likely?
A False-positive anti-HCV tests appear more often when persons at low risk for HCV infection (e.g., blood donors) are tested. Therefore, it is important to confirm a positive anti-HCV test with a supplemental test, such as RIBA (recombinant immunoblot assay), as most false positive anti-HCV tests are reported as negative on supplemental testing.

Q Under what circumstances might a false-negative anti-HCV test result occur?
A Persons with early HCV infection might not yet have developed antibody levels high enough that the test can measure. In addition, some persons might lack the (immune) response necessary for the test to work well. In these persons, further testing such as PCR for HCV RNA may be considered.
Q What exactly is "active" hepatitis C?
A What a great question! You've hit on something that would seem straightforward, but in truth, the terms used to describe hepatitis have changed over the years as our knowledge has evolved and our technological capacity has progressed.

I am sure you do not want to hear a discussion of all these issues. Suffice it to say that when health care workers use the term "active hepatitis," they are referring to ongoing inflammation in the liver. This is usually accompanied by increased liver enzyme levels and specific findings that go along with inflammation on the liver biopsy. Hence, "active hepatitis" may be a finding noted on liver biopsy as well.

Q: What is hep C RNA and PCR?
A: These are the names of two tests for the hepatitis C virus. While hepatitis C screening tests detect antibodies produced in response to the hepatitis C virus, the hep C RNA and PCR tests detect the virus itself in the blood.

Q What does it mean when your viral load increases over the course of a year or two? Mine went from 4K to 8K. Took treatment twice.
A Viral load does not indicate disease severity. So the fact that your viral load has gone up does not indicate that your liver disease is worse, or that your disease is progressing. In studies where researchers took blood from people with HCV very frequently, it was found that the amount of virus in the blood fluctuates by huge numbers over time (and even within a single day). In short, what does it mean that your HCV viral load went from 4K to 8K? Based on all the evidence available, it indicates nothing of clinical relevance that you should be concerned about.

Q My HCV antibody test is reactive while the PCR test is undetectable. Is that cause for alarm?
A The most common explanation for this finding is that a person has been exposed to the hepatitis C virus at some point (hence the reactive antibody test), but has since cleared the virus (the reason the PCR test result is undetectable). A much less likely reason for these findings would be that the virus level is indeed too low to be picked up by the PCR test (different tests are more or less sensitive to low levels of the virus).
The best way to address this is by talking with your doctor, who knows your past medical history, past test results, and other issues that may influence your test results

Q I have recently been diagnosed with hep C type 1B. I went to a gastro doctor who says he won't treat me because my count is only 5000. Should I make an appointment with an infectious disease doctor? I want to try to get it out of my system before it grows more. I am so weak, I sleep most of the day and always feel sick. How come I feel so sick if my count is so low?
A Your hepatitis C viral load does not reflect the severity of your disease. It also does not predict the progression of hepatitis C disease. You didn't mention whether you had a liver biopsy. The liver biopsy will give you and your doctor information about how much damage has occurred in the liver as a result of having the hepatitis C virus. This is an important consideration in deciding whether treatment is indicated. You clearly describe that you are not feeling well. Your thought to talk with another doctor may be a good option if you feel your other doctor is not responding to your needs. It is your decision, of course. Whether you decide to go back and see your current doctor again or decide to see someone else, it is important to have a partnership with your doctor wherein you are working together to help you feel better.

Should I seek to have the most sensitive PCR test ?

Q I completed peginterferon/ribavirin therapy 4 1/2 years ago and just tested negative again for the virus. The test that was done was at the level of 50 parts per million. But a newer and more expensive test, not covered by insurance, can detect 5 parts per million. Could I still have the virus at extremely low levels and, if so, what are the chances it's still doing any damage? Should I seek to have the most sensitive test done next year?
A I do understand your concern, but after testing repeatedly undetectable for 4 1/2 years, the possibility of you still having the virus at levels consistently lower than the lower limit of detection of the test is extremely remote. I cannot say it is absolutely, positively impossible - but pretty close. Should you have the more sensitive test? I cannot answer that for you. I would urge you to talk with your doctor about this, but also do some personal reflection. If nothing short of the most sensitive test can put your mind at ease, then perhaps that is the best course of action for you. Best to you.

Q Can persons become infected with a different strain of HCV after they have cleared the initial infection?
A Yes. Prior infection with HCV does not protect against later infection with the same or different genotypes of the virus. This is because persons infected with HCV typically have an ineffective immune response due to changes in the virus during infection. For the same reason, no effective pre- or postexposure prophylaxis (i.e., immune globulin) is available.

Q Can superinfection with more than one genotype of HCV occur?
A Superinfection is possible if risk behaviors (e.g., injection drug use) for HCV infection continue, but it is believed to be very uncommon.

Q What can a person with chronic hepatitis C do to take care of his or her liver?
A People with chronic hepatitis C should be monitored regularly by an experienced doctor. They should avoid alcohol because it can cause additional liver damage. They also should check with a health professional before taking any prescription pills, supplements, or over-the-counter medications, as these can potentially damage the liver. Check with his or her doctor about getting vaccinated against hepatitis A and hepatitis B.

Q I have hepatitis C. Would injections of B-12 be helpful for extreme fatigue?
A Dr. Lyn Patrick, a naturopathic physician and contributing author to the book Hepatitis C Choices provided the following response to this question on vitamin B-12.
There are many possible reasons for fatigue in hepatitis C: nutrient deficiencies that can occur in late stage cirrhosis;thyroid disorders such as autoimmune thyroiditis (where the immune system attacks the thyroid gland) or hypothyroidism (lowered production of thyroid hormones); anemia that may result from standard treatment with ribavirin or from the chronic infection itself. In addition, people with hepatitis C can have other health problems unrelated to hepatitis C that may cause or contribute to fatigue.

Although a vitamin B-12 deficiency can occur coincidentally along with any of the above, simply taking B-12 would not correct the other causes of fatigue. In late stage disease, any of the fat-soluble vitamins (A,D,E, or K) can become deficient as the liver loses its ability to store these nutrients, something we depend on for adequate stores in the body.

It is very important to have blood work and any other appropriate medical tests done to determine the cause of the fatigue so it can be properly treated. Since vitamin B-12 is nontoxic, supplementing your diet with a B-12 is not dangerous, but not everyone can absorb B-12 from a pill or from food. Injections may be necessary in certain situations, but that must be determined by your doctor.

The bottom line here is that the cause of the fatigue must be determined before it can be treated.

Q I heard that vitamin A is bad for the liver. I have hepatitis C with cirrhosis. Should I avoid vitamin A and foods that contain vitamin A?
A Vitamin A,like all vitamins, is necessary for good health. Some vitamins are stored in the fat of the body (vitamins A, D, E and K) and can become toxic if taken in high doses over a prolonged period of time.

While it is not necessary to avoid a daily multivitamin or foods that contain vitamin A, extra amounts of vitamin A (above the recommended daily allowance) should be avoided to prevent overload and toxic complications.

Always talk with your doctor before taking any new medication or supplement to be sure it is safe for you. Even over-the-counter products can be hazardous in certain circumstances.

Q What about using Milk Thistle ?

A Laboratory studies suggest that milk thistle may benefit the liver by protecting and promoting the growth of liver cells, fighting oxidation (a chemical process that can damage cells), and inhibiting inflammation. Study results from small clinical trials on milk thistle for liver diseases have been mixed; however, most of these studies have not been rigorously designed, or they have looked at various types of liver diseases—not just hepatitis C. High-quality, well-designed clinical trials have not proven that milk thistle or silymarin is beneficial for treating hepatitis C. The HALT-C study mentioned above found that silymarin use by hepatitis C patients was associated with fewer and milder symptoms of liver disease and somewhat better quality of life, but there was no change in virus activity or liver inflammation.

Q How long does the hepatitis C virus survive outside the body?
A The hepatitis C virus can survive outside the body at room temperature, on environmental surfaces, for at least 16 hours but no longer than 4 days.
How should blood spills be cleaned from surfaces to make sure that hepatitis C virus is gone?
Any blood spills -- including dried blood, which can still be infectious -- should be cleaned using a dilution of one part household bleach to 10 parts water. Gloves should be worn when cleaning up blood spills.

Doctors - Can you tell me about Fibroscan?
Q I have heard from other Heppers that it is better than a liver biopsy and shows so much more. Is this still in the testing phase or is it possible to find a hospital to do it? Do you know if insurances (medicare) would pay for it? It seems so good, not to have the invasiveness of a biopsy. I am so interested in this. Will you please give me you thoughts and ideas on this? And if there is anyway you know how I can find a facility in my area that is doing it? I'm in the Treasure Coast of Fla and very close to South Fla.

A Fibroscan is a non invasive imaging study that evaluates the degree of liver stiffness, or scaring, known as fibrosis. It does this by determining the speed of sound waves through the liver utilizing a sonogram. Similar to blood tests such as Fibrotest and fibrosure, the fibroscan works well in determing the 2 extremes of liver disease - minimal or no scarring from cirrhosis. It does not work so well in evaluating moderately damaged livers and this scan is not yet approved in the U.S. Liver biopsy, while not perfect, still remains the gold standard for determining the stage of liver disease

Liver Biopsy
Q: I probably got Hep C 32 years ago, but just learned of it now at age 56. My gastro doctor says my blood tests are normal including tumor marker and he feels no swelling of liver. Left the decision up to me, but think I might not need a liver biopsy. What do you think?
A: In the absence of cirrhosis, the only way to determine with certainty how much scarring has occurred in the liver because of chronic hepatitis C infection is to perform a liver biopsy. Blood tests and tumor markers can be normal even the presence of significant liver scarring.

Q I just found out I have hep c. Most websites say you need a biopsy. My GI doctor looked at my family doctor's blood tests from me, felt of my stomach, and said I am ready for treatment. How can that be?

A You are correct, in most cases, a liver biopsy is recommended - but not always. The reason to do the liver biopsy is to see how much scarring (fibrosis in doctor-speak) has taken place in the liver because of the hepatitis C. For many people, a liver biopsy is the only way to find out this information. But in some cases, the doctor can tell how much scarring has taken place from the results of blood tests and feeling the liver. I do not know if this is the situation with you, but it may be - and if that's the case, not doing a liver biopsy would be in line with what most doctors would recommend. I would urge you to talk this over with your doctor to find out why he/she is not recommending a liver biopsy for you.

Q I have had hepatitis C for at least 15 years (that I know of). I had a check-up last week and my doctor scheduled me for an ultrasound to check for liver cancer. I have not had any new symptoms, and feel normal - so why does my doctor think I need to be checked for liver cancer? This has me worried.
A Long-standing hepatitis C infection increases a person's risk of liver cancer. While the vast majority of people with hepatitis C will never develop liver cancer, the increased risk for the disease is why doctors screen for it.
Liver cancer, like most other cancers, causes no symptoms early on. People with early stage liver cancer feel well. Symptoms usually do not develop until the liver cancer has become advanced and is much more difficult to treat.
While any cancer screening test tends to cause concern, try to take comfort in the fact that your doctor is being thorough in checking you periodically for liver cancer.

Mother being exposed to HEPATITIS C

Q My mom is a nurse and she said she got someone's blood on her finger (around the cuticle area too) for like 5 minutes and didn't know it at first. The person had Hepatitis C. And now she's very paranoid and worried. She has really dry hands and fingers, so she thinks there was a cut there and she may have Hepatitis C now.
A The incubation period for hepatitis C ranges from 15 to 150 days with the average around 50 days. You didn't mention how long ago this exposure was. I assume you mean she knows the patient had hepatitis C and worries because she came in contact with the blood when not wearing gloves. If this is a particular patient and she knows she had not previously been infected with hepatitis C, she can be tested now and maybe even repeat the test at 150 days after the exposure. If she shows no hepatitis C by then she can assume she was not infected.

Q: Does it take 2 to 6 months for hepatitis c to be come noticeable?
A: People who become infected with the hepatitis C virus are often unaware that they've been infected for up to 10, even 20 years because there are no initial symptoms.
If your question has to do with how long after a potential exposure to the virus would someone test positive, that is a different time frame.

After a potential or known exposure (blood-to-blood contact with another person known to have the hepatitis C virus or who may have hepatitis C), it is recommended that testing for the hepatitis C antibody be performed at 4 to 6 months after the exposure OR that testing for the hepatitis C virus itself (a test often called an HCV PCR or hepatitis C viral load test) be performed 4 to 6 weeks after the potential exposure.

Q: Could my boyfriend have given me hep C sexually?

A: Evidence indicates that hepatitis C can be spread by sexual intercourse, although this appears to be quite uncommon. Hepatitis C is spread by blood-to-blood contact. If your sexual practices involve blood-to-blood contact, precautions should be taken to protect yourself.

Q Is the sperm from a father with hepatitis C infectious to the baby if conception occurs?
A There is no evidence that the semen from a man with hepatitis C can infect the baby if conception occurs. The only known risk of passing on hepatitis C to a newborn is when the mother has hepatitis C. The virus can be passed from mother to baby at the time of delivery, but this is uncommon.

Q If my partner has HCV and we are trying to get pregnant but have had two misscarriage, is it due to the fact that he has HCV and my body is rejecting the pregnancy?
A Your partner having HCV does not affect your ability to get pregnant and does not cause miscarriage. Talk with your obstetrician/gynecologist about this problem to see if there are factors at play in the miscarriages that can be corrected.

After being clear for 6 months can you drink

Q This is an odd question, but after being cleared with no sign of HCV, is it possible to start drinking beer again?

A This answer is dependent upon multiple factors, such as gender, degree of liver scarring, general health,and other factors. In general, if cirrhosis is present one should continue to avoid all alcohol, even if the cause of cirrhosis was HCV.

Q How does alcohol effect the progression of hep C?
A The combination of alcohol and chronic hepatitis C is a dangerous one. The two in combination cause more liver damage than either one would alone. If you have hepatitis C, you should not consume any alcohol. If you are drinking and are having trouble stopping, please read the chapter on Alcohol and Hepatitis C in "Hepatitis C Choices" on this Internet site. It's free - and what you read there will give you more detailed information about this issue along with resources for help, should you need it.

Eradicated Hep C Still Dangerous?

Q If someone claims to have had "eradicated" Hep C for a number of years, is there a possibility, however remote, that that person could infect someone close to them such as a husband or wife? Is it true that this person could unexpectedly see a relapse in his or her condition, even after years of remission?
A The chance of relapse - i.e. a return of the HCV virus, after 6 months of discontinuation of therapy and the HCVRNA is still undetectable ( LESS THEN 5-10 IU/dL) is so rare that the medical community is now comfortable telling patients that they are cured. This means that you are not contagious to others by any meansIt is important to remember two things.1. HCVAb - hepatitis C antibody will remain positive - this does not mean that you are infectious to others, but it does mean that you will not be able to donate blood or organs in typical situations2. If you have cirrhosis, you are still at risk for liver cancer and liver failure.

Q Is it possible to get over hepatitis C ?
A Yes, approximately 15%–25% of people who get hepatitis C will clear the virus from their bodies without treatment and will not develop chronic infection. Experts do not fully understand why this happens for some people

Q I am going on a rafting trip this summer with some friends. Most of the people on that will be on the trip know that I have hepatitis C - but not all. Should I tell the trip leader ahead of time that I have hepatitis C?
A The decision about whether to disclose to those who do not already know you have hepatitis C is a personal one. Regardless of what you decide, everyone (including you) should familiarize themselves ahead of time with how to practice "universal precautions" in the event of an emergency. Universal precautions are intended to prevent the spread of all blood-borne infections (including hepatitis C). If everyone on your trip knows and practices universal precautions, the risk of blood-borne infection transmission is extremely remote (even in an emergency situation).


Q I was also dx with Fatty Liver. First found out about my liver being fat about 7 years ago when I was about 40 lbs lighter and in much better shape. Now after quitting smoking over a year ago and the extra weight I've gained b/c of quitting, I'm wondering how much weight will I have to lose to not have the fatty liver along with my Hep C?
A Once a fatty liver shows up by imaging studies - such as a sonongram, it means that at least 30% of your liver is laden with fat. This is very unhealthy for your liver and impacts your likelihood of curing HCV with antiviral treatment. You are to be congratulated for discontinuing cigarette smoking, and weight gain is a very common consequence.In addition to a healthy weight-lose diet and exercise program, studies have demonstrated that the following vitamins may be helpful in treating fatty livers - Vitamin E, Betaine, Vitamin C, Vitamin D. Of course, prior to starting any new diet/vitamins/ and exercise/ you must check with your personal physician, as he/she knows the details of your history best.In specific answer to your question, I actually researched and published on this issue over 2 decades ago- and found that losing 10% of your current body weight will significantly impact the amount of fat on your liver.Extensive details on nutrition and hepatitis can be found in my book and my website

SSRI antidepressants and elevations in liver function tests
Q Is there a relationship between SSri antidepressant medications and elevations in SGPT and Sgot blood tests? Oddly enough my sister also has benign thyroid nodules that increase in size when on these antidepressants. Is there another safer form of antidepressants that treat depression and not effect LFTests? Her GGT was 278 and Sgot was 200. Thanks
A While SSRIs are considered to be safe for people with liver disease, they can increase liver-related blood tests. However, other causes of liver elevations need to be looked for as the SSRI may or may not be the cause, for example, thyroid disease can also sometimes cause elevations in liver enzymes

Q I have hep C. Is it okay for me to use Prozac?
A Studies have shown that, overall, Prozac can be taken safely in someone with hepatitis C. Be sure your liver doctor knows you're taking Prozac and is monitoring you for any changes in your liver as well as any symptoms of new or worsening depression.

Q Is it safe to continue taking medical marijuana after being diagnosed with hepatitis C?
A Frequent marijuana smoking (daily in one study) has been found in some studies to cause more rapid progression of the disease in the liver. If possible, it is best to avoid anything that may complicate or accelerate the progression of the disease. I urge you to talk with your doctor to see if there may be other alternatives that would make it possible for you to stop using medical marijuana in order to protect your liver from possible damage related to its use.

Q I have read that the estrogen hormone in females help protect the liver from hep C. At 50 years old and having hep C for 32 years, should I take hormone replacement therapy to help protect my liver against further damage from hep C?
A While there is some evidence that naturally occurring estrogens may play a role in slowing the rate of progression of hepatitis C-related liver damage, hormone replacement therapy (HRT) is not recommended as a way to protect the liver from HCV-related damage. As I'm sure you're aware, HRT is associated with certain health risks of its own.

Q How serious is HCV infection?
A Many people with HCV infection will never develop symptoms. Ten to 20 percent of HCV-infected persons will go on to develop cirrhosis (scarring of the liver). Less than 5% will actually die of HCV. The good news is that new treatments to cure HCV infection are becoming available.

Q Does chronic Hepatitis C affect only the liver?
A A small percentage of persons with chronic HCV infection develop medical conditions due to Hepatitis C that are not limited to the liver. These conditions are thought to be attributable to the body's immune response to HCV infection. Such conditions can include
Diabetes mellitus, which occurs three times more frequently in HCV-infected persons
Glomerulonephritis, a type of kidney disease caused by inflammation of the kidney

Essential mixed cryoglobulinemia, a condition involving the presence of abnormal proteins in the blood

Porphyria cutanea tarda, an abnormality in heme production that causes skin fragility and blistering

Non-Hodgkins lymphoma, which might occur somewhat more frequently in HCV-infected persons

Q What Is Fibrosis ?A When the hepatitis C virus enters theliver cell it uses the chemicals in the cell to multiplyand make more copies of itself. Eventually the newviruses are released back into the bloodstream. Duringthe process it kills the liver cell it has invaded. Itis at this point that the body’s immune system sendschemicals to the liver cells to try to repair the damage,but something goes wrong – the area around the livercell becomes inflamed and irritated.

Eventually, thearea around the cell is surrounded by a type of tissuethat may eventually form light scarring. As more andmore liver cells are destroyed by the hepatitis C virus,the scarring starts to spread and it connects with otherdamaged and scarred cells.After many years of infection the liver can be so damagedthat it can not perform all of the functions to keepus healthy. The light to medium scarring of the liver iscalled fibrosis.

The liver is also called a “non-complainingorgan” so most people who develop fibrosis do notknow that there is damage occurring.After a period of time (usually many years) the fibrosiscan become so severe that it spreads and connects toother liver tissue and forms extensive scarring. Thisis called cirrhosis.

There are two types of cirrhosis– compensated and decompensated. Compensated cirrhosismeans that the liver is heavily scarred but canstill perform most of the functions that keep peoplehealthy. Decompensated cirrhosis means that the liveris so scarred that blood can not flow through it whichcauses the liver function to break down. When it reachesthis stage there are many conditions and symptoms thatcan occur.

Q What are my chances of developing cirrhosis or other complications?
A Only about 20 percent of people with hepatitis C develop cirrhosis of the liver, and of those, only about one in four develops complications from cirrhosis. So overall, only about 5 percent of all people with hepatitis C develop cirrhosis complications.

It’s been estimated that the number of people with cirrhosis and complications will increase by about 600 percent over the next 10 years. That’s not because more people are getting hepatitis C — the incidence of the virus has actually been going down since the United States started screening donor blood in 1992. The reason for the increase in complications now is that cirrhosis generally takes 30 or 40 years to develop (although alcohol use can accelerate it). The millions of Americans who contracted the virus in the ’60s, ’70s and ’80s, before we knew how it was transmitted, are just now starting to develop the complications that take decades to develop.

Q How do you manage cirrhosis and its potential complications?
A In terms of monitoring, people who are experiencing complications from hepatitis C should see their primary care provider every two to three months, and their gastroenterologist every four to six months. The primary care provider will reassess symptoms and check lab work. The gastroenterologist will adjust medications and screen for complications. Screenings should include a liver ultrasound twice a year to check for signs of cancer, and an upper endoscopy once a year to monitor for a complication of cirrhosis called varices — enlarged veins in the digestive tract that can cause bleeding.

In terms of treatment, the complications may vary widely from one patient to the next, so each person’s management regimen is highly individualized.

Q Does everyone with hepatitis C eventually develop liver cancer?
A No — in fact, most don’t. Only people who develop cirrhosis as a complication of hepatitis C have a higher risk of developing liver cancer. About 20 percent of people with hepatitis C develop cirrhosis — advanced liver scarring caused by decades of inflammation. Of those who do develop cirrhosis, about 20 percent eventually develop liver cancer. So overall, among all people with hepatitis C, the chance of developing liver cancer at some point in your life is about 4 percent.

Liver Cancer After Treatment For Hepatitis C
November 23, 2016
A collection of 2016 articles retrieved online from press releases, conferences (The Liver Meeting® 2016 and the International Liver Congress 2016) and peer-reviewed journals featuring long-term risk for liver cancer in those who were cured of Hepatitis C.

December 2016
The following article appeared in the December print edition of HCV NEXT, published online at Healio; Screening for HCC in the Post-SVR12 Setting

Q What makes some people with hepatitis C more or less likely to get liver cancer?A If you don’t develop cirrhosis, then you are at no higher risk of liver cancer than the general public. Having cirrhosis is what raises the risk, so anything that increases your risk of developing cirrhosis will also increase your risk of developing liver cancer.
Alcohol consumption is the key risk factor here. People with hepatitis C should not drink alcohol, since it can accelerate liver damage. Certain prescription and non-prescription drugs also can damage the liver, so people with hepatitis C should review their medications with their physician to make sure they aren’t taking anything that could put further stress on their liver. Finally, smoking increases the risk of all cancers, including liver cancer, so people with hepatitis C should not smoke.

Q How does hepatitis C lead to liver cancer?A Hepatitis C inflames the liver, and over the course of many years, this inflammation can lead to scarring. Most people with hepatitis C never experience significant scarring or complications, but about 20 percent develop cirrhosis, which is advanced scarring throughout the liver.
Because hepatitis C is a slowly progressive virus, it can take 30 or 40 years for cirrhosis to develop. Meanwhile, the liver is resilient — when damage occurs, the liver goes to work to regenerate itself. We believe that cancer occurs during this ongoing cycle of injury and regeneration. The more cells the liver regenerates, the higher the chances that a mutation will occur in one of those cells, and it’s these mutations that can lead to hepatocellular cancer.

Q Is there a way to screen people with hepatitis C to check for liver cancer?A Yes. Ultrasound is the main screening tool used to check for tumors in the liver. Ultrasound is non-invasive and can detect tumors when they are quite small.

Q Should everyone with hepatitis C get ultrasound screenings?
A Since liver cancer is a complication of cirrhosis, people who don’t have cirrhosis don’t need to be monitored closely for liver cancer. But people who do have cirrhosis should definitely get regular ultrasound screenings to check for liver tumors.

Q How often should a person with cirrhosis get screened for liver cancer?A At the Providence Liver and Pancreas Clinic, we recommend that people with cirrhosis get an ultrasound screening twice a year. The more vigilant you are about getting these screenings regularly, the better your chances of catching cancer early, when treatment is most likely to be successful.

Q Are there any symptoms of liver cancer that a person should watch for?A Liver cancer usually doesn’t present any outward symptoms in its early stages, which is why regular screening is so important. Signs of advanced liver cancer may include pain, tenderness or a lump on the upper right side of the abdomen; enlargement of the abdomen; jaundice (yellowing of the skin and whites of the eyes); easy bruising or bleeding; nausea; fatigue; loss of appetite; unexplained weight loss; or pain around the right shoulder blade.

Q Is hepatitis C curable?A When a health care provider prescribes antiviral therapy for a person infected with hepatitis C virus, one of the goals is to reduce the person’s viral load (the amount of the virus present in the blood) to undetectable. If there is no measurable virus repeatedly in these people, they are considered to be “sustained viral responders”. Should treated individuals continue to be virus-free after repeat blood tests after two, three, five, and eight or more years, then specialists consider these people to be cured of hepatitis C.

2016Physicians and HCV: Don't Be Afraid to Say 'Cure'
Direct-acting antivirals (DAAs) in the treatment of hepatitis C virus (HCV) have changed the face of hepatology forever.

The miracle drugs have provided a cure for upwards of 95 percent of individuals involved in clinical trials for medications such as Sovaldi and Harvoni. Yet even with these astounding medical advances, patients still fear the worst when faced with an HCV diagnosis.

In an interview with CURE Hepatitis C, Donald Jensen, M.D., recently retired professor of Medicine and Director of the Center for Liver Diseases at the University of Chicago Medical Center, shared his thoughts on why physicians and specialty pharmacists alike need to work to ease patients’ minds and assure them that there is a cure to the disease.

Dr. Jensen makes special efforts with his patients to educate them more about their infection. In addition to providing them with informational websites such as the American Liver Foundation (ALF) web site and the Centers for Disease Control and Prevention (CDC) web site, he allows patients to email him directly with information they have found online so that he may check the validity before using it as a reference.

“A lot of physicians don’t give their patients their email address. They don’t want patients to have their email address … because then they become legally liable for information that they transmit,” Dr. Jensen said. “I’ve never been really concerned about that. It’s counseling that I’m doing, I’m not telling them what treatment to do or that sort of thing. It’s more helping them with educational information.”

With the amount of misinformation circulating about HCV, it makes sense to provide patients with that extra care. In fact, many patients are told by their referring physicians that they have a death sentence upon diagnosis, according to Dr. Jensen, which is severely misguided.

In addition to being told that they are going to die from their liver disease, patients are also led to believe there is no cure for HCV.

“[DAAs] represent a cure for hepatitis C and that’s an important message that we need to get out. This is a curable disease. It can prevent other complications down the road, or most of the complications down the road, if someone is cured of their disease,” Dr. Jensen said. “For years, we as physicians avoided the ‘cure’ word and used ‘sustained response,’ and sustained response is not the same as cure. It does not connote the same information that cure does.”

Dr. Jensen is a huge advocate of physicians using the word “cure” in relation to HCV rather than sustained virologic response (SVR).

“I think we need to say [cure], not only to reassure the people who have had a sustained response, but also to encourage people that haven’t yet been treated to undergo treatment,” Dr. Jensen noted. “If they don’t think it’s a curable disease, they’re going to say, ‘well why should I get tested? Why should I get treated?’ I think using the ‘cure’ word right up front is very important.”

Dr. Jensen even went so far as to organize a reception at the University of Chicago for patients who were cured between the years of 2011 and 2013. Forty-two patients attended the reception and some even gained enough courage to speak about their disease despite the stigma attached to it.

Out of that reception evolved a web site authored by Dr. Jensen that serves as a patient portal for sources of information regarding HCV, and that discusses the importance of “cure” when speaking about HCV treatment.

However, even with existing cures available, patients still struggle to access curative medicines because of the high price tag that accompanies drugs like Harvoni and Sovaldi. Dr. Jensen suggests a possible solution to this issue.

“The role of specialty pharmacies to take over a middleman role to try and negotiate to get some access to these medications through their insurance provider, I think has been very important,” he said. “They always had a role in hepatitis C therapy even with interferon, but I think their role is even bigger now because there are far more patients being treated now than there were in the interferon days. I think specialty pharmacy becomes very important in helping to negotiate for coverage and access to treatment.”

In addition to the high cost of treatment, there exist restrictions by Medicaid regarding coverage for hepatitis C treatments only for the very sickest of patients, making access even more difficult.

“Sometimes letters from [physicians] can help in arranging coverage for treatment, but the big trend that we never ever faced before is this access to care,” Dr. Jensen said. “It’s really unconscionable; we have a treatment that cures hepatitis, that can prevent cirrhosis, prevent liver cancer, prevent the need for liver transplant in millions of patients, and yet to be denied access to that medicine because it’s too expensive is really a shame on both the pricing by the pharmaceutical industry as well as by the insurance and government agencies that are legislating the restrictions.”

The high cost of medication has also changed the patient-physician dynamic, according to Dr. Jensen. Prior to this trend, physicians never got more involved in a patient’s treatment than prescribing medication.

“A doctor never got involved much more in the price of the medicines or in the negotiating to get treatment, except on rare conditions for very experimental therapies,” Dr. Jensen explained. “So I think this for us is sort of a new experience for there to be this issue of pricing of medications and astounding copays that patients would sometimes have to pay out of their own pocket for these medicines. I think for us as physicians this is sort of a new era for us to be dealing with negotiating payment for medications.”

Additionally, the astronomical pricing of medications make patient adherence to treatment difficult. However, Dr. Jensen’s practice has a special policy in place where nurses follow up with patients regularly, even after treatment has ended, to make sure patients are following doctor’s orders, remaining adherent to medication, and sustaining a virologic response well after treatment has ended.

But Dr. Jensen commends HCV patients for being generally adherent despite the multitude of factors that could prevent it. He explains that HCV patients are motivated individuals who are pretty good about taking their medicines, not unlike HIV patients who have similar adherence behaviors.

Patients with HCV do have a great reason to remain adherent to their regimen. The medication is proven to be a cure in many cases, has limited side effects, and provides patients with an avenue to a healthier life. Dr. Jensen assures his patients that the new treatments are tolerable and will provide them with a cure.

“I think first they should know that the treatment is simple and highly effective and really free of major side effects,” Dr. Jensen said. “For the most part I’m really telling them how easy this therapy potentially really is. And I’m telling them how important it is that they take their medicine on a daily basis, that they don’t miss doses.”

Dr. Jensen is positive about the cure for hepatitis C, and says that the possibility for eradication is clear in our future.

“It turns out we probably don’t need to treat everybody, and we can probably still get to a state by 2030 where we reduced significantly the prevalence of hepatitis C, as well as the morbidities associated with hepatitis C (liver cancer, cirrhosis and need for liver transplant) by 2030, even if we treat a significant percentage of those who have hepatitis C and not necessarily everybody,” Dr. Jensen said.

But Dr. Jensen also cautions that this projection comes with a stipulation. If the population of young injection drug users in the United States decreases, then hepatitis C may have a better chance at being fully eradicated. But if the problem of injection drug use continues to grow, the possibility of eradication may turn out to be a pipe dream.

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