It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them

Members of Drexel University's Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.

Members of Drexel University’s Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.

May is Hepatitis Awareness month. Why do we need an annual reminder about hepatitis B? Because 65 percent of the estimated 2.2 million people in the U.S. living with hepatitis B don’t know they’re infected.

Studies show when people know their hepatitis B status, they’re more likely to get monitored regularly, get treatment, and take steps to avoid passing on the disease to partners and their children.

So why are so many Americans unaware of their hepatitis B infection? Here are five roadblocks that stop us from getting tested for hepatitis B, and what how we can do to overcome them.

We feel fine, so we assume we’re not infected. Hepatitis B rarely causes symptoms. There are very few sensory nerves around the liver, so when a viral hepatitis infection strikes, we rarely feel its effects. As a result, most of us – especially if we were infected as children or newborns – never experience any symptoms for decades. So remember, “feeling OK” is no excuse to avoid testing.

We’re afraid and would rather not know if we have hepatitis B. In this case, ignorance can lead to liver damage, cancer, and the spread of this potentially-fatal infection. When a hepatitis B infection is identified and monitored, our chances of leading a long and healthy life increase markedly. Getting tested is scary, but getting liver cancer is deadly.

We think we’re not at risk: We humans have an amazing capacity to “forget” or ignore things we’ve done that were stupid, embarrassing and put us at risk, or that might lead to painful discoveries and disclosures. If we ever had unprotected sex with someone whose hepatitis B status is unknown to us, we are at risk. If we or our parents come from a region, such as Asia and Africa, that has high rates of hepatitis B (see the map) we’re at risk. If we’re a gay male, we’re at risk. Wishful thinking will not protect us from liver disease.

We lie to our doctors: Studies show we consistently lie to our doctors about how much we drink, what drugs we use, how much we exercise, and whether we are sexually active. We’re afraid of being judged, but lying to our doctor is hazardous to our health. If we say we’re monogamous or don’t tell them about drug use, our doctors will be less likely to screen us for certain sexually transmitted infections, including hepatitis B. So tell the truth and get tested.

Our doctors don’t screen us, even when we’re at risk because of our ethnicity: Medical guidelines make clear that immigrants (and their children) from countries with high rates of hepatitis B should be screened for hepatitis B, but studies show many doctors aren’t doing this. A doctor’s office may be one of the few places where it’s OK to racially profile patients, because some ethnicities are clearly at higher risk of hepatitis B than others. One in 12 Asian-Americans has hepatitis B, and two in three don’t know it. Immigrants from Africa and the Middle East have similar high infection rates. All should be screened.

awarenessmonth_211x205This month, get tested for hepatitis B. Go to your doctor’s office, or get tested at a local community health center, Hep B United screening event, STI clinic, needle exchange program, or at a Planned Parenthood clinic.  For a partial list of screening events held across the country, click here.

hepatitis testing dayStill not sure if you should get tested? Take this five-minute risk assessment test designed by CDC. Meanwhile, here is who should get screened for hepatitis B, according to CDC guidelines:

  • People born in Asia, Africa, and other regions with moderate or high rates of hepatitis B
  • Unvaccinated people whose parents are from regions with high rates of hepatitis B
  • Anyone who has had or is having sex with a person infected with hepatitis B
  • People who live with someone with hepatitis B
  • Men who have sexual encounters with other men
  • People who inject drugs
  • All pregnant women
  • People with HIV infection
  • People on hemodialysis
  • People who receive chemotherapy or other types of immunosuppressive therapy

 

Beating the Odds: A Liver Cancer Survivor’s Story

Liver cancer, caused by hepatitis B and C, is on the rise in the U.S. and it is also the second deadliest. Fewer than 15 percent of patients with liver cancer will survive five years after their diagnosis. It is the third-leading cause of cancer deaths among Asian-Americans and the eighth-leading cause of cancer deaths among Caucasian-Americans.

Despite this bleak outlook, there are people with liver cancer who are beating the odds and surviving. The medical community is also working hard to develop new drugs and effective strategies to treat liver cancer. Here is one survivor’s story.

By Frank Gardea

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

In late 2008, during routine testing before surgery, I found out I had hepatitis C and liver cirrhosis. It was a double whammy because having both viral hepatitis and cirrhosis put me at high risk for liver cancer.

Then the abdominal pain started. I suffered for almost three years and was in and out of the emergency department. They could not pinpoint the cause of the pain. When they finally diagnosed my liver cancer, the tumor was over 8 cm in size.

I was of course angry. Why didn’t they catch my cancer earlier? I was hospitalized for over a week and then referred to the oncology department. That’s when they told me, “You have three months to live.”

I was not a candidate for a liver transplant and one of the doctors didn’t even want to give me a referral to a hepatologist because she thought I was too far gone.  I went home and binge-watched YouTube videos on liver cancer. I found out that far too often, by the time liver cancer is diagnosed, it’s too late.

Another doctor later referred me to UCLA, one of the top liver cancer centers in the country. At my first appointment at the liver cancer center, I saw Dr. Richard Finn, a leading liver cancer expert, who was part of a team of health care professionals taking care of me. They never once said I was beyond hope.

The following week, the tumor burst and I was admitted to the liver cancer center. I realized I was dying. They did a procedure called TACE that saved my life. I was put on an oral targeted therapy, which, in combination with the TACE, caused the tumor to shrink.

Fulltime Job

Life definitely has changed for me. I had a small company that I had to pretty much shut down. I fell behind on my mortgages but was able to work out agreements to get them modified. Being a patient now became my fulltime job.

I spent most of my time negotiating insurance plans, figuring out medical costs, and going for medical visits. My friends put me on their private insurance plan for two years, and then I got my own insurance through the Affordable Care Act. Without that insurance, I would not have been able to survive.

Staying Positive

It’s hard to stay positive when you know you have a tumor inside you that is killing you. It’s not just financially, but also emotionally draining. I go for mental health therapy because I get so depressed. Being sick, not being as physically active as I want, and coping with the side effects of the drugs can get overwhelming.

Be Your Own Advocate!

The most important thing I have learned is that I have to educate myself about my disease and be prepared when talking with my doctor. I had to become my own advocate, asking questions and being persistent about getting the care I need.

I am not out of the woods yet, but I have a lot to be thankful for. I have now lived three years longer than expected, thanks to my care team. They say I am one of their success stories!

I have joined a cancer support group so I can share my experience. Maybe I can help somebody.

For more information about liver cancer, visit our Liver CancerConnect website getting screened for liver cancer when you have hepatitis B, click here.

How Was I Infected with Hepatitis B? Making the Journey from Anger to Acceptance

Image courtesy of stockimages at FreeDigitalPhotos.net

Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

“How did I get infected? Who could have infected me?” These questions are common when we are first diagnosed with hepatitis B.

Dumbfounded by the news, we struggle to understand when this infection could have occurred and who could have infected us with a virus that now threatens our health and well-being.

This diagnosis not only affects our health, it can weaken the trust we’ve placed in family members, friends and lovers. It threatens to dismantle basic beliefs we’ve held about fairness and honesty, and the assumption that if we treated people well that we would be treated fairly in return. Infections know no moral codes and ignore all the unspoken deals we have made with the universe. Continue reading

Know Your Rights: If You Suffer Severe Liver Damage from Hepatitis B, You May Qualify for SSDI or SSI

 Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

The majority of people infected with hepatitis B lead healthy and normal lives. However, a small number of people may develop liver disease that will dramatically affect their quality of life and their ability to work on a short-term or long-term basis.

They may not be able to work for several weeks because of side effects from pegylated interferon treatment, or progressive liver damage could make it impossible to work and support themselves and their families even after treatment.

Below is information that can help you, your family members, or someone you advocate for apply for disability benefits to help them during when they can’t work due to hepatitis B-related health problems. The first step is to find out if you can meet the Social Security Administration’s (SSA’s) medical eligibility requirements to receive disability support. Continue reading

Help Stop Insurers from Over-Charging Patients for Hepatitis B Drugs on the Healthcare Marketplace

Image courtesy of Taoty at FreeDigitalPhotos.net

Image courtesy of Taoty at FreeDigitalPhotos.net

By Christine Kukka

For years, people with pre-existing conditions like chronic hepatitis B struggled to get health insurance. News stories and Michael Moore’s documentary Sicko highlighted insurance companies’ refusal to cover pre-existing conditions and their practice of inflating premium prices if consumers had chronic health problems.

Outraged by industry efforts to cover only low-cost, “healthy” consumers, lawmakers banned discrimination  against pre-existing conditions in the Affordable Care Act (ACA – Obamacare). The ACA’s Healthcare Marketplace website promises, “Your insurance company can’t turn you down or charge you more because of your pre-existing health or medical condition like asthma, back pain, diabetes, or cancer.”

While health plans sold on the marketplace can’t openly refuse to insure people with pre-existing conditions, some have devised an insidious way to discourage people with hepatitis B from buying their policies. They have dramatically increased the copays consumers pay out-of-pocket for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately make their health plans unaffordable for people with chronic hepatitis B. Continue reading