Hep B Blog

Like Hepatitis B, Addiction Is a Chronic Disease That Needs Treatment Without Judgement

addictionBy Christine Kukka

Addiction is a chronic disease, like hepatitis B, type II diabetes, cancer and heart disease. These diseases all run in families, are influenced by environment and behavior, and are notoriously difficult to treat.

No one chooses to develop diabetes or heart disease. Nor do they choose to be a drug addict or alcoholic, or infected with hepatitis B. Yet, how we view and treat people with these chronic diseases varies drastically.

As a society, we view heart disease as a tragic occurrence. It kills roughly the same number of people as cancer, lower respiratory diseases and accidents combined and costs us more than $316.6 billion in health care and lost productivity.

But most heart disease is preventable and results from an inability to make wise choices about food and exercise. Yet, when we hear about a heart attack, we don’t shake our heads and say, “If only they had exercised more,” or, “too bad they didn’t have enough self-control to lay off the junk food.”

alcoholicBut we do say that about smoking, drug addiction and alcoholism, and about some of the chronic infectious diseases that result, such as hepatitis B or C or HIV.

How often do we who have hepatitis B quickly tell our friends that we were infected at birth, to make sure they know it wasn’t from drugs or promiscuity? Even we who live with hepatitis B can get caught up in the notion that some hepatitis B cases carry shame and others do not.

If we can get past our moral judgements about addiction and view it instead as the chronic disease it is, maybe we can also stop moralizing and judging people with STIs or viral hepatitis or HIV. Maybe we can finally get better at talking about it, preventing it and treating it.

There is overlap between “respectable” chronic diseases like cancer and heart disease and stigmatized diseases like addiction to tobacco, alcohol or street drugs. According to the National Institute on Drug Abuse:

  • Tobacco contributes to 11 to 30 percent of cancer deaths and 30 percent of heart disease deaths each year.
  • Tobacco, cocaine, amphetamines, alcohol and steroids all contribute to heart disease.
  • Injecting drug use contributes to one-third of HIV/AIDS cases and most hepatitis C cases, and is now responsible for an increase in new hepatitis B infections in many rural states, despite the availability of a safe and effective vaccine.

cigaretteWe need to re-orient our views of addiction if we are ever to treat it scientifically. Everyone with a chronic disease deserves treatment, quality care and respect.

Between 200,000 and 300,000 people are infected with hepatitis B in the U.S. each year, 20 percent are injecting drug users.  More than 80 percent of drug users who have been injecting for a decade or longer have been infected with hepatitis B.

We need effective treatment for all addictions, no matter if the drug of choice is tobacco, alcohol, heroin, fast food, sweets, or an opioid prescribed by a doctor.

April is Alcohol Awareness Month, let’s take a moment to recognize our own prejudices and discard them for the sake of all touched by the chronic disease of addiction.

How to Find a Liver Specialist Who Really Knows Hepatitis B

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

If you have chronic hepatitis B or are newly-diagnosed, it’s important to see a liver specialist who has experience with hepatitis B.

Having a specialist with hepatitis B expertise on your team not only safeguards your health, it also lessens the stress of having a chronic liver disease. “My specialist gave me all the possible scenarios, but most importantly, he gave me my life back,” one hepatitis B patient recalled.

When first diagnosed, it’s often a primary health provider (PCP) or for children a pediatrician who gets the test results and calls to break the news. Doctors may run additional blood tests and/or immediately refer you to a liver specialist. They may recommend a specialist who accepts your insurance or practices in the same healthcare system, but you may have to do some research to find the best specialist to treat your hepatitis B.

There are two types of specialists who treat liver diseases:

  • A gastroenterologist is an internist who has trained in digestive disorders including the liver, but how much liver expertise a gastroenterologist (GI doctor) has varies based on their training. It’s important to find out if they specialize in liver diseases.
  • A hepatologist is a physician who specializes in the liver. This doctor has the most expertise and should be up-to-date about new treatments and clinical trials. But not all hepatologists have treated hepatitis B. Many will have treated hepatitis C, but not hepatitis B, so you need to ask.

Tips for finding a specialist:

  • Are they in the Hepatitis B Foundation directory? The foundation has a Physician Directory of liver specialists who treat hepatitis B around the world. These doctors have voluntarily signed up  for the database. It is not an exhaustive list, there may be hepatitis B specialists in your area who have not yet joined the directory.
  • Call the practice ahead of time and ask questions. How many hepatitis B patients have they treated? Do they participate in any clinical trials?  Are they aware of current monitoring and treatment guidelines for hepatitis B?
  • What’s the doctor’s reputation? Does anyone in your community see a liver specialist for viral hepatitis? Whom do they recommend?
  • Will you actually see the specialist or an assistant? Do you see a specialist only if there is a need for treatment? If you go to a teaching hospital, do you see the doctor or an intern, fellow or resident?

You are entering into a long-term relationship with someone who may care for you for many years. You need their expertise, but you also need to feel comfortable working with them. Do they listen when you speak and make eye contact? Trust and rapport are very critical.

“It’s really important that they don’t judge me,” one hepatitis B patient explained.  Another patient said that finding a doctor who spoke his language, or had an assistant who was fluent in his language, helped immensely.

Once you identify a specialist, here are some questions to ask:

  • Is the specialist accepting new patients? How long do you have to wait to get an appointment?
  • What hospital or lab do they use, and are they convenient for you? It’s important for you to always use the same lab so you have consistent results that allow apples-to-apples comparisons.
  • Will the doctor call you with the results or will a nurse or other assistant communicate with you?
  • What would you like your care plan to be? Will you go for blood tests and then see the specialist? Typically, hepatitis B patients get blood tests once or twice a year to monitor their liver, unless they are undergoing treatment.

How to design a long-distance care plan if the specialist is far away:  Sometimes, the best hepatitis B specialist is a few hours-drive from where you live, but distance doesn’t have to be a deal breaker. Many people see a specialist for a first visit, and afterwards simply have their PCPs or local labs email lab results to the specialist. For this remote healthcare relationship to work, your PCP needs to be willing to partner with the specialist. Also, your specialist needs to be open to telephone consultations with you as needed.

Technology matters. Sharing medical records and lab tests electronically make a remote relationship work smoothly. If there are firewalls between practices, find out how to ensure your PCP and specialist share your medical records. Be prepared, you may have to be the conduit if the two healthcare systems don’t talk to each other.

Insurance and cost: Ideally, the hepatitis B specialist closest to you accepts your insurance or is in your provider network. That doesn’t always happen so finding out the charges in advance is important.

  • Will the specialist bill your insurance or will you need to pay the fee upfront and manage the insurance reimbursement yourself?
  • How much do you have to pay out-of-pocket if the specialist is outside your network, or if you are not insured? Some specialists charge a lower fee to uninsured patients. You may be able to have an annual consultation with a specialist and bring your lab results.

One hepatitis B patient reported he was not entirely happy with the specialist his PCP referred him to. “At the time, I had great insurance so all the tests he ordered weren’t a lot of money out-of-pocket,” he said. “But then I changed jobs and I couldn’t afford all of his tests, and he wanted me to go on treatment though my lab reports didn’t justify it.

“I went looking for a new one and found one in the Hepatitis B Foundation’s website,” he said. “I had to drive farther to see him, but his knowledge and patience were very comforting and he spoke my primary language. He really helped me regain confidence in life. ”

Prepare for your visit: Before you see the specialist, put together a list of questions (see sample questions) and have your lab reports available — either bring hard copies or call ahead of time to make sure the doctor has access to your latest labs and medical records.

After you meet with your specialist, take some time to reflect. Are you happy with the doctor? Did he or she communicate well? Are you clear about what you need to do in the weeks and months ahead to take charge of your health? If the answer is yes, congratulations, you have assembled a good healthcare team.

Iron Overload Affects More Than the Irish, People with Hepatitis B-Related Liver Damage Need to Be Tested

Image courtesy of zole4 at FreeDigitalPhotos.net.
Image courtesy of zole4 at FreeDigitalPhotos.net.

By Christine Kukka

Iron is crucial to our health, but too much iron – called iron overload – can put us at risk of liver damage and other health problems, especially if we have hepatitis B-related liver disease and/or we’re Irish.

Irish and hepatitis B are not normally two words you hear in the same sentence, but both populations may need to be careful about how much iron they eat.

  • A liver inflamed or damaged by a chronic hepatitis B infection or other causes doesn’t process or store liver effectively and the excess iron accelerates liver damage and causes a host of other medical problems.
  • If you’re Irish or of northern European ancestry, one in eight of you have a genetic predisposition for hereditary hemochromatosis (HH) – commonly called the Celtic Curse — that occurs when the body doesn’t process or store iron properly, leading to a four-fold increase in iron absorption.
  • If you’re Irish and have chronic hepatitis B, you may want to celebrate St. Patrick’s Day with a trip to your doctor for a simple blood test for ferritin (iron) and transferrin saturation. If they’re elevated, your doctor may order a gene test to see if you have HH.

The relationship between iron overload and hepatitis B has been problematic, or as researchers like to say, “not well defined.”

Our liver is the body’s major storage organ for iron. About one-third of the iron we consume is stored in liver cells, which play a major role in recycling iron and synthesizing transferrin (the main transporting protein) and ferritin (the major storage protein) from iron.

Image courtesy of Stuart Miles at FreeDigitalPhotos.net.
Image courtesy of Stuart Miles at FreeDigitalPhotos.net.

When our livers are damaged or inflamed from hepatitis B, the Celtic Curse, fatty liver or alcohol, they don’t synthesize iron well, leading to excessive iron deposits in the liver which leads to more liver damage, including inflammation, fibrosis and even liver cancer.  In some hepatitis C patients, iron overload was found to reduce the effectiveness of antiviral treatment in some patients.

Researchers often found elevated iron levels in hepatitis B patients and suspected chronic hepatitis B could lead to iron overload. Recently, new research has discovered it’s the inflammation or liver damage from hepatitis B that causes iron problems. People with “inactive” hepatitis B with no signs of liver damage usually do not experience iron overload.

“Our data clearly indicate that hepatitis B-related liver injury, but not direct chronic hepatitis B infection, is likely responsible for the changes in the serum iron markers,” researchers concluded in a report on this topic published in the European Journal of Gastroenterology & Hepatology.

Hepatitis B Foundation Medical Director Robert Gish believes that iron overload is a “non-issue” for hepatitis B patients. However, he does have his patients get a transferrin saturation test. (A score of 20 percent indicates iron deficiency while a score exceeding 50 percent suggests iron overload.)

Many foods in our diet are rich in iron, including iron-fortified cereals, breads and pastas and meat including beef, pork, poultry and seafood.

According to experts, unless we have severe liver damage (often indicated by elevated liver enzymes (ALT/SGPT) or an ultrasound), we don’t need to restrict our consumption of foods rich in iron.

But if we do have liver damage and/or are Irish, it might be worth a conversation with our doctor. When we have excess iron, it is usually not detected by a complete blood count (CBC), hemoglobin, or hematocrit, test, it requires the transferrin saturation test.

Symptoms to watch for include fatigue, joint pain, abdominal pain, irregular heartbeat, skin color changes, irregular menstrual cycles, loss of libido and impotence, bone density changes, depression, anxiety, muscle pain, brain fog, chronic diarrhea, diabetes, liver damage and headaches.

For more information on HH, visit the website of the American Hemochromatosis Society.

Struggling with Depression and Hepatitis B? You’re Not Alone

Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net.
Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net.

By Christine Kukka

Studies show people with chronic hepatitis B have higher rates of depression and anxiety than the general population, which should surprise no one.

There’s no cure, people with hepatitis B face stigma and discrimination, and when we disclose, we risk rejection or friends think we’ve done drugs or slept around. And, if we are people of color, we’re already viewed as outsiders or different already; a medical diagnosis just adds to our feeling of alienation.

Sometimes, we need help. We need to be reminded once again that hepatitis B is nothing to be ashamed of, that millions of people around the world are infected not because they did anything wrong, but because it’s not a perfect world and not everyone had access to the hepatitis B vaccine at birth or sterile medical equipment or is able to practice safe sex 100 percent of the time.

Some symptoms of depression include feeling sad, down, or just emotionally flat or apathetic. We may feel tired, irritable, or experience mood swings and find we are unable to concentrate. If we’re taking antivirals, we may frequently forget to take our meds. We might also lose our appetite, sleep too much or too little, and fantasize about harming ourselves or even suicide.

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

It’s time to get some help. Medical guidelines usually recommend a combination of “talk” therapy and antidepressant medication. Talking to a therapist, especially if you’ve always kept your hepatitis B a secret, can help you get a better handle on your infection. It can be liberating to have another person challenge your cataclysmic view of life, especially if you’re you’ll never find love or happiness.

It’s also good to join a support group or an email list to confirm that you’re not the only one in the world with hepatitis B.

The other treatment for depression are antidepressant pills, taken daily. Antidepressants take a while to build up in your system so you usually have to take them for a few weeks before you feel better.

Are antidepressants safe if you have hepatitis B?

Antidepressants generally do not harm the liver, unless you have severe, pre-existing liver damage (such as cirrhosis), are older, or are taking several medications at once.

According to research, about 0.5 percent to 3 percent of those taking antidepressants may develop very mild elevation in their liver enzymes (called ALT or SGPT), which indicate mild liver damage. Unless you already have severe liver damage, experts see no threat from antidepressants, but if there is concern, your doctor should monitor your ALT/SGPT levels more frequently than usual during your first weeks of antidepressant treatment, especially if your ALT/SGPT level is already elevated.

“I would say antidepressant shouldn’t be used if there’s been liver failure,” said Hepatitis B Foundation Medical Director Robert Gish. “If there’s just cirrhosis and you have normal liver function (normal ALT/SGPT) antidepressant still should be fine. The only one not to use is Cymbalta (duloxetine). “

The antidepressants that may cause the highest risk of moderate liver damage,  include monoamine oxidase (MAO) inhibitors, tricyclic/tetracyclic antidepressants, nefazodone, bupropion (Wellbutrin, also used for ADD and smoking cessation), duloxetine and agomelatine.

Drugs with lower risk of causing liver damage include citalopram, escitalopram, paroxetine (Paxil) and fluvoxamine.

Among the most common antidepressants used today is fluoxetine (Prozac).  According to the National Institutes of Health LiverTox report,  in people with no pre-existing liver infections or damage, “Liver test abnormalities have been reported to occur rarely in patients on fluoxetine (less than 1 percent), and elevations (in ALT/SGPT) are usually modest and usually do not require dose modification or discontinuation.”

In addition to seeking treatment and therapy, below are some other ways to relieve stress and improve your sense of well-being.

  • Join a support group.
  • Ask friends of family for help.
  • Don’t isolate yourself.
  • Replace negative thoughts with positive ones, even if you don’t believe it at the beginning. Talk it until you can walk it.
  • Join a yoga, meditation or stress management class.
  • Get out in the sunlight and exercise more, even if it’s taking a short walk. Find something you find joy in.
  • Eat healthy foods, exercise regularly.
  • Get at least eight hours of sleep each night, and talk to your healthcare provider if you have problems sleeping.
  • Avoid alcohol (which is a depressant) and other self-medication.