But I didn’t. And clearly, neither do many of the 2.4 million Americans living with chronic hepatitis C today.
Why Some People Overlook the Risks of Hepatitis C
After living in South Africa for more than a decade, I moved back to the United States in 2016. It was then that my new doctor reminded me that hepatitis C testing is recommended for all people born between 1945 and 1965. At first, I didn’t think much of it. Sure, I was a born in 1962, but beyond that, I considered myself to be the least likely person to have hepatitis C. I was in excellent health, I went to the gym regularly, and I never experienced any signs or symptoms of liver disease. Even when my first blood tests revealed that my liver enzymes were elevated, it still never dawned on me that hepatitis C might be the cause. To me, the virus was spread by using drugs; I didn’t even drink alcohol. How could I possibly have become infected?
How Misperceptions About Hepatitis C Can Boost the Infection Rates
The mind does funny things when you are told you have hepatitis C. After learning that I had the infection, I felt something like shame, and maybe even a little defensiveness. At least that’s how I reacted when my doctor asked, “Have you ever injected drugs?” It’s true that today, injection drug use is the predominant mode of hepatitis C transmission in the United States. Approximately 53 percent of people who inject drugs also have hepatitis C, according to a review published in December 2017 in the journal The Lancet, many of whom do not get tested for fear of disclosing their drug use. In fact, a collaborative study published in 2006 in the journal Public Health Reports from the National Development and Research Institutes in New York found that 72 percent of people ages 15 to 30 who inject drugs were unaware that they had hepatitis C. But injecting drugs isn’t the only way to contract the virus, and that misperception is keeping people from being screened for the infection. “Perception plays a huge part in a person’s decision to test,” says Imtiaz Alam, MD, a hepatologist and gastroenterologist based in Austin, Texas. “Because the disease is so strongly associated with stigmatized behaviors, some people will avoid testing simply out of fear of association.” There are other risk factors for hepatitis C, says Dr. Alam, including:
Having had a blood transfusion before 1992Having received a blood clotting factor before 1987Being born to a mother who had hepatitis C during her pregnancyHaving had a needlestick injury as a healthcare worker
Another risk factor is the year of a person’s birth. The Centers for Disease Control and Prevention (CDC) recommend that every baby boomer — or persons born between 1945 and 1965 — be screened for the virus at least once. Baby boomers are five times more likely to have hepatitis C than other adults, in part because the virus was unknowingly spreading throughout the ’60s, ’70s, and ’80s, says the CDC. For this generation, hepatitis C wasn’t even a part of the medical vernacular until 1989, when the virus was officially identified. Without the tools to screen blood or diagnose the infection, the virus was allowed to spread unchecked, often without triggering symptoms until decades later. As a result, baby boomers today account for an estimated 75 percent of all chronic hepatitis C infections in the United States, according to the CDC. Sadly, the public health message is still not reaching its target audience. According to a study published in July 2017 issue of the American Journal of Preventive Health, only 13.8 percent of the 76.2 million baby boomers in the United States have ever been tested for hepatitis C.
Being Treated Successfully for Hepatitis C
I consider myself lucky. While I would be lying to say that the diagnosis didn’t cause me stress, I was also aware of how far hepatitis C treatment has come since the first of the new direct-acting antivirals (DAAs) were introduced. Today, an ever-widening array of DAAs are delivering cure rates in excess of 90 percent and in as little as eight weeks, according to the CDC. While these successes have placed hepatitis C more firmly in the public consciousness, the cost of medications and access to specialists are barriers for many people. For example, a 2017 report by the Center for Health Law and Policy Innovation of Harvard Law School and the National Viral Hepatitis Roundtable noted that “many public and private payers choose to limit access to DAAs,” in part because of the cost. Though initially I had been denied treatment following the review of my first round of tests, I was finally approved following a subsequent ultrasound and officially started on a medication to treat hepatitis C in September 2017. I completed therapy 12 weeks later, and — having experienced nothing more than a mild, short-lasting rash — no longer have a detectable amount of virus in my blood. The results were maintained for 24 weeks, referred to as a sustained viral response (SVR), and I’m now considered “cured.”
Lessons Learned
Today I feel stronger and more alert than I have been in a long time. The malaise I once felt (and largely discounted to age) has all but disappeared. As a friend who’d also been on treatment had earlier forewarned me: “You never truly realize how sick you are until you finally get better.” Looking back, I should have known better. I knew the guidelines, but I chose to ignore them. Not only am I incredibly grateful for my doctor’s intervention, but I also shudder at the thought of what might have happened if she hadn’t stepped forward. It is not as unlikely a scenario as you might think. In a study published in 2016 in the Journal of Community Medicine and Health Education, researchers from John Hopkins University found that only 35 percent of 129 primary care physicians surveyed screened patients who had risk factors for hepatitis C. Moreover, only 4 percent rated themselves as being skilled in managing the disease. Not all of us have the blind luck of having a doctor who is clued in to hepatitis C. If you, like I, are part of the baby boomer generation, do yourself a favor and get tested today. By knowing your status, you can take better care of your health and work with your doctor to access the treatment you need.
