Guide to Hepatitis B for People Living With HIV
Learning more about hepatitis B will help you better understand the complexities of this condition and become a more informed partner with your doctor in making health-care decisions. Following are some basic questions you might have about HBV and HIV/HBV coinfection. You can find more detailed discussions of these questions in later chapters.
What Is Hepatitis B?
Hepatitis B (HBV) is a virus that infects liver cells. Once inside the liver, HBV can reproduce in large numbers while causing no liver damage for years to decades. In fact, many people with HBV are healthy and will never need treatment. But in about one out of four people, as they live with the infection longer and by reasons still unclear, their immune system will start to recognize the infection and activate by attacking and killing HBV-infected liver cells, slowly causing liver inflammation and scarring (called fibrosis). Eventually, HBV can lead to more serious liver scarring (called cirrhosis), liver failure, or liver cancer (hepatocellular carcinoma, or HCC).
How Did I Get HBV?
Because they usually have no symptoms when they are first infected, people with HBV are often surprised when they find out they have it. HBV can be passed from mother to infant at birth or during early childhood; in parts of the world where HBV is common (Africa and Asia), most people with HBV were infected at birth and may not know they have it. Adults can get HBV through unprotected sex or sharing injection drug equipment with someone who is infected. Since these are also HIV transmission routes, HIV/HBV coinfection is common with these risk activities.
The good news is that HBV can be prevented. There is an effective preventive vaccine, and the use of condoms and clean drug injection equipment greatly reduces the risk of transmission. For more information about HBV transmission and how to protect yourself and others, see Section 2 on Transmission and Prevention.
How Serious Is HBV?
Hepatitis B infection is a very complicated condition, and researchers are still trying to understand why the disease is more serious in some people than in others. For example, when healthy adults are first infected (acute infection), only about 30-50% will experience symptoms, and the vast majority (more than 95%) will be able to clear the virus on their own (spontaneous clearance) within the first three months. HIV-positive adults, due to their weakened immune system, are significant less able to clear HBV on their own. Infants and young children usually experience no symptoms during acute infection, but since their immune systems are not yet fully functional, only about 10% will clear HBV. If infection is cleared, the immune system develops antibodies that provide protection from becoming infected again. If the infection is not cleared, it becomes chronic (or lifelong).
Since physical symptoms are rare until extensive liver damage has developed in this slow progressing illness, most people who were infected at birth may not experience any serious health problems until they are in their thirties to fifties.
The risk of chronic HBV progression varies, based on many factors. People are at higher risk for developing serious disease if they:
Because there are so many complicating factors, it is difficult to generalize about the likelihood of disease progression; therefore, it is important to consider your own specific situation and to make your health-care decisions accordingly. For more information on how to do this, see Section 3 on Natural History.
How Common Are HBV Infection and HIV/HBV Coinfection?
Worldwide, at least 350 million people are chronically infected with HBV. In the United States, an estimated 2 million people are living with chronic HBV infection. Since HIV and HBV are transmitted in similar ways, coinfection is common: an estimated 10% of the 36 million HIVpositive people worldwide are coinfected with HBV. Globally about 50% of reported cases of cirrhosis and 30% of liver cancer are HBV-related, and over 500,000 people die from them each year.
Since the mid 1980's, universal HBV vaccine programs for newborns have been highly successful in lowering HBV infection rates in countries that have implemented them, while countries that have not put programs in place are seeing their HBV epidemic continue to grow. Decades later, people without access to HBV vaccination and those born before the vaccine became widely available are now starting to develop serious liver disease.
HIV-positive people who have access to treatment are living longer, but are now experiencing liver damage caused by viral hepatitis, including HBV. End-stage liver disease (ESLD) from viral hepatitis coinfection is now a leading cause of death among people with HIV.
Will HIV Make My HBV Worse?
HIV worsens HBV infection because HIV weakens the immune system, making it harder for HIV-positive people to clear an acute HBV infection. In chronic HBV, HIV induced immune dysfunction can increase the risk of liver damage caused by episodes of immune activation that targets HBV infected liver cells. Coinfected people are more likely to experience faster HBV disease progression and sustain more liver damage than those with HBV alone. HIV coinfection also increases the risk of developing HBV-related liver cancer later in life.
It is very important for all HIV-positive people to be screened for HBV before starting their HIV treatment for the first time, because coinfection impacts treatment decisions. This is because some HIV drugs are also effective against HBV, while others are not. If a chosen HIV drug combination lacks the ability to control HBV at the same time, as people's immune system improves with HIV treatment (immune reconstitution) while their HBV is left unchecked, previously unnoticed HBV infection may now be recognized by the improved immune system and trigger a strong immune response, potentially causing rapid and severe liver damage that can be fatal.
This is especially important for coinfected people starting treatment with a low CD4 cell count (<200/mm3) as they may have a much higher level of HBV in the body, which can trigger a more severe immune response. Your doctor should watch out for rapid and high liver enzyme elevations during the first few months after starting HIV treatment.
Caution should also be taken when coinfected people stop or switch their HIV regimen. Stopping HBV treatment can cause a viral rebound, an increased HBV viral load that can trigger an immune response and cause liver damage. This is called an HBV flare. Likewise, switching to another HIV regimen without a HBV active drug can also cause an HBV flare. For more information, see Section 4 on HBV Disease Progression and the Impact of HIV Coinfection.
Will HBV Make My HIV Worse?
It isn't clear that HBV infection has any direct impact on HIV disease progression; however, many HIV drugs can be broken down properly only if the liver is healthy. HIV-positive people with HBV-related liver damage may be unable to process the drug efficiently, and may experience more severe side effects caused by higher drug concentrations left in the body. Some HIV drugs can also cause liver damage directly. These drugs should be avoided in people coinfected with HBV. Ask your doctor to prescribe medications that are less likely to cause liver injury.
What Tests Should I Have, and What Do the Results Mean?
Doctors use many different tests to regularly monitor the activity of HBV, watch for signs of disease activation, and measure degrees of liver damage. These tests can provide important information about the current state of your HBV disease and are used as guideposts for HBV treatment initiation, as well as measurements of your response to treatment. These test results can show fluctuations (irregular swings/changes) in the amount of virus in the blood and changes in liver inflammation frequently seen in chronic HBV, so you will need to track them over time in order to see a clear pattern that will give you enough information to make treatment decisions. To understand more about these tests and what they tell you, see Section 5 on Diagnostics.
Can HBV Be Cured, and How Do I Know If I Need Treatment?
It is not currently possible to cure HBV with treatment, since small particles of the virus (cccDNA) inserts itself inside the nucleus of liver cells, where the drugs cannot reach it; but drugs can control HBV in order to prevent or delay the development of liver damage. Some HIV-negative people who have successfully controlled HBV with treatment may be able to stop treatment and rely on their immune system alone to keep the virus in check. Most people, however, will need to stay on HBV treatment indefinitely.
Although there have been encouraging improvements in HBV treatment over the last ten years, making treatment decisions can be complicated. Doctors and researchers are still trying to find better indicators for the need to start treatment, but in general they agree that people can benefit from treatment when their HBV is actively replicating, and there are signs of ongoing or existing liver inflammation or scarring. Since HBV treatment is not always necessary, deciding whether to wait and see, or to start treatment, can be difficult, especially considering the potential long-term treatment side effects and the high cost of lifelong therapies.
There are now six different drugs available to treat HBV. There are major concerns about the emergence of drug resistance, as some of these drugs are more effective than others in controlling drug-resistant HBV mutations. For more information about HBV treatment and current guidelines on when to start, see Section 6 on HBV Treatment.
What Should I Do First After Learning I Have HBV?
For some people, joining a support group makes sense. Talking to others and sharing your experiences can make you feel less isolated. Dealing with difficult issues, such as disclosing your status, and recommending HBV testing and vaccination to your family or to sex and drug-use partners, can be more manageable when you hear about how others have dealt with these situations.
Finding a doctor who is experienced in treating both HIV and HBV is an important next step. Many people have negative feelings about hospitals, clinics, and doctors' offices, perhaps from traumatic experiences in the past. One thing to keep in mind is that with managing a chronic disease like HBV, you might go through many years of monitoring your condition with just routine blood tests and office visits without the need for treatment. Working with a doctor you like and trust, and taking charge of your own health-care decisions, can be empowering and positive experiences. You may want to see a liver expert (a hepatologist or a gastroenterologist) in addition to your HIV caregiver.
When you are ready for treatment, an important step is finding health-care coverage. If you have an HBV diagnosis, health insurance can be expensive and hard to get. This can be a difficult issue to tackle, but it may be the most important thing to sort out first, as HBV treatment is costly. HIV-positive people usually have better access to treatment than people who don't have HIV, through publicly funded programs that were created through advocacy by people living with HIV in the 1980's. There may be state funded government assistance programs where you live, and drug company discount programs that can help defray some of the costs for your HBV treatment and lab tests. For more information about where to find support, information, and financial assistance, see Section 12 on Resources.
Are There Other Hepatitis Viruses I Should Know About?
In addition to HBV, here are several other viruses that infect the liver. They are named alphabetically (A, C, D, and E) in the order in which they were discovered. All HIV-positive people should be tested for these viral hepatitis infections. Although all of these viruses infect the liver, each virus is different, and some are more serious than others. Being coinfected with more than one virus can further complicate your health and cause more rapid liver damage. For more information about other viral hepatitis coinfections, please see Section 11 on Other Viral Hepatitis.
This article was provided by Treatment Action Group.