7 Things No One Tells You About Living with Hepatitis C

Historically, estimates of Hepatitis C infection in IV drug users ranged anywhere from 50-80%, and now some experts say UP TO 90% OF PEOPLE WHO USE OR HAVE USED IV DRUGS HAVE HEPATITIS C,also called HCV (Hepatitis C Virus). Obviously, IV drug use isn’t the only way you can contract Hepatitis C, but IV drug users (and people who live with them) are far more susceptible then the general population. I sat down with a coworker, John*, who is living with Hepatitis C to find out more. Here are 7 things no one tells you about living with Hepatitis C.

*name has been changed to protect privacy

#1: Your Life Isn’t Over

While Hepatitis C requires treatment and lifestyle changes, it’s not a death sentence and, in fact, there are many people living with Hep C and managing quite well. Because it’s a retrovirus and, thus far, there is no known cure – only treatment – most people’s first reaction is one of fear and they think being diagnosed with Hep C is like getting a death sentence.

Early diagnosis and interventions with treatment are key to living with Hepatitis C and managing symptoms, but you have to get tested and treated. If you have ever used drugs intravenously, or lived closely with someone that has, you should get tested. It isn’t a routine test. You have to ask for it. Still, if you can catch the disease in the early stages, the chances of major liver damage are much, much smaller. Many people, like John, don’t find out they even have the disease until the disease has done major damage to their liver. .

#2: You Actually Don’t Die From Hepatitis C

What we mean is that, Hepatitis C itself doesn’t kill you; it’s the health complications cause by the Hepatitis virus that can cause serious illness and even death, if untreated. One common, major health complication associated with Hep C is liver damage, such as cirrhosis of the liver.

#3: Treatment Isn’t Uniform

There isn’t just one treatment for Hepatitis C; your genotype (there are six different genotypes!) and viral load determines what treatment you will receive. The American Academy for the Study of Liver Diseases (AASLD) also notes that treatment should be individualized—timed and tailored based on the risks and benefits of therapy in each patient.

#4. Exposure Doesn’t Necessarily Mean Infection

The first test to determine if you have Hepatitis C usually checks for the presence of Hepatitis C antibodies. If you do have antibodies, your doctor will recommend further testing. This is because some people (particularly people who live with others infected by hepatitis C) will be exposed to Hepatitis C, develop antibodies, and clear it spontaneously. So they will test positive for the antibodies, but will have no viral load. This is how John was initially diagnosed. His wife was in the hospital undergoing tests after an emergency, and the doctors found out she had been exposed, but was not infected. They then suggested that John get tested.

#5. Insurance Companies Don’t Want to Cover Treatment

Hepatitis C treatment is not cheap, and insurance companies may initially refuse to pay. John had to submit forms several times before his treatment was covered. Insurance companies are notorious for these kinds of tactics. You must keep submitting the necessary forms, even if they initially deny coverage. You can also look into contacting a patient advocate or case worker – there are people who hold such positions with hospitals.

#6. New Hepatitis C Drugs Have Been “Fast-Tracked” by the FDA

Over the next five years, a whirlwind of new direct-acting antiviral agents (DAAs) for hepatitis C are expected to get the green light from the FDA. Luis Balart, MD, chief of gastroenterology and hepatology at Tulane University School of Medicine, in New Orleans explains how DDAs work: “There will be two drugs, three in some cases, attacking the virus at different sites. By attacking the virus at two or three different sites, you prevent the resistance to agents that may lead to failure or cause patients to relapse.”

There are, of course, pros and cons to this. One main pro is that there are options out there for HCV treatment and ones that offer less severe side effects. However, one of the main cons is that these drugs are being fast-tracked and therefore the long-term health effects are not yet known.

#7. Hepatitis C is More Insidious Than HIV

Due to the wide media exposure that HIV and AIDS has gotten, it is a much more recognized health threat among the general population – which is largely uneducated about Hepatitis C, making it a greater health threat than HIV.

Generally speaking, people tend to think that HCV is somehow not as bad as HIV and therefore don’t take it as seriously. This kind of attitude leaves people at risk and more susceptible to contracting Hep C. Then there’s the lack of testing. Because people don’t see Hep C as a serious threat, they are less likely to get tested or take precautions.

Also, many people want to “put off” testing and treatment because they think that the consequences of Hepatitis C infection won’t affect them for many years. This is a big reason why deaths from hepatitis C infection among US adults now outnumber AIDS fatalities.

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