This isn’t a feel good, inspiring post, but I encourage you to read on.
What is this SILENT EPIDEMIC? Hepatitis C (HCV).
At my most recent annual visit with my primary care provider, the nurse handed me a permission form for HIV/AIDS screening. I commented to her that it’s great that this screening is being routinely offered, but what about Hepatitis C? I knew infection with HCV is more prevalent than HIV/AIDS, yet it’s not common knowledge and there are no routine screening questions at doctor’s visits. I started to wonder, what’s going on with federal health officials to keep this epidemic a secret?
Why should you care? According to the Centers for Disease Control and Prevention (CDC), 3.2 million Americans are thought to have Hepatitis C and about half have not been diagnosed. “Persons newly infected with HCV are usually asymptomatic, so acute Hepatitis C is rarely identified or reported”. Worldwide the number is 170 million. About 15% of those infected clear the infection in the acute phase, those who do not are considered to have chronic infection. Of those with chronic infection, 60-70% will develop liver disease with 5-20% developing cirrhosis or liver cancer over 20-30 years. Hepatitis C is the number one cause of liver transplant. In 2007, 15,000 deaths were related to Hepatitis C, almost 15% more than the number of deaths caused by AIDS. It’s estimated that one in 33 baby boomers are living with chronic HCV. Since a majority of people with chronic hepatitis C are in this age group, federal health officials are considering recommendation of a one-time blood test (as they do routinely for HIV/AIDS) for individuals born between 1945 and 1965.
Why don’t more people know about this? Hepatitis C often has no symptoms until advanced disease takes hold. It is an indolent disease, ticking away like a time bomb, until the immune system is worn down by years of valiantly and quietly fighting the infection. If there are symptoms, they can be vague and transient. Headaches, unexplained joint and muscle pain, chronic fatigue and lowered resistance to infections of all kinds over time. On physical exam, liver inflammation may or may not be apparent during the chronic phase, so may go undetected. Medical forms rarely ask the most important questions about risk factors that would lead to screening.
What are the risk factors? Experimenting with IV drugs through shared needles, even one time, is the biggest risk factor. The next highest risk are hospital and emergency workers with direct patient care who risk infection by needle stick. Receiving blood products or transfusion before 1992, when screening became routine in the U.S. is a risk factor. (You can find more risk factors on the CDC website listed below.)
Why isn’t routine testing done? This isn’t entirely clear, but the stance of federal health officials is that the two drugs for Hepatitis C (a combination of weekly Interferon injections along with twice daily Ribavirin tablets) had a cure rate of only 40% with a duration of 48 weeks. According to the CDC, “there are at least six distinct HCV genotypes (genotypes 1–6) and more than 50 subtypes have been identified. Genotype 1 is the most common HCV genotype in the United States” and has not been a good responder to this treatment. This logic makes no sense, as if recommending screening would cause a “problem”; people rushing off to be tested only to find that treatment was not effective. But I know from my personal experience of having HCV for nearly four decades, that there ARE steps that can be taken for self-care with this infection (see bullet points below). Finally federal health officials are considering the recommendation for routine screening because two new “protease inhibitors” were approved by the FDA about a year ago, one or the other used in combination with Interferon and Ribavirin. Treatment duration has been reduced from 11 months to as little as six or seven months for those with Genotype 1 who had never been treated. Cure rate has risen to 75 – 85%. Despite this good news, there are no upfront promises on length of treatment. Depending on viral response, treatment can still be as long as 48 weeks. The treatment is grueling with side effects severe enough that some people have to drop out of treatment while others may be so debilitated that they need to take medical leave from work.
What does treatment cost? The two new drugs, Telapravir and Bocepravir, can add a whopping $1,000 to $4,000 a week to the current cost of up to $30,000 for two drug therapy. Without adequate insurance to reduce out-of-pocket expense, this price tag is prohibitive and the biggest blockade and complaint made by those who are infected. The irony is that people who can afford this huge financial investment are more likely to have insurance. Those who are willing to go into drug trials can receive free treatment.
Are there other options being explored? Currently, there are new drugs in the last phases of clinical trials. It is hoped that even more successful treatments with fewer side effects will be available within the next few years.
What can you do if you have risk factors? Be honest with your primary care provider about your concern. Ask for a simple blood test. If your test comes back positive for HCV, ask for a referral to a gastroenterologist who specializes in liver disease. Your specialist will check viral load (which is an indicator of chronic infection) and liver values, both simple blood tests that will help determine the severity of your infection.
What can you do to take care of yourself if you have chronic Hepatitis C?
- Be proactive and educate yourself. Start with www.cdc.gov
- Learn how to be an advocate for your health care. (See noted articles below)
- Take note of what you are eating, drinking and supplementing. Eliminate or minimize liver stressors, like alcohol and over-the-counter medications. Read all labels. Ask your specialist about what is appropriate for you. Know that some herbal products that you may take routinely may be toxic to the liver. Take vitamin supplements without iron (Hepatitis C feeds on the liver and loves iron).
- Give your immune system an added boost with adequate rest and exercise.
- Notice your thoughts and beliefs. If they don’t serve your overall well-being, look at how you can shift them to be empowering.
- Look around your life and see what stresses you emotionally and energetically. Are there relationships that drain you? Are there issues or problems that create stress? Are you dealing with a loss in addition to the loss of optimal health?
- Reach out for support. Support groups, Hepatitis C blogs, alternative practitioners, adjunctive therapies, spiritual guidance, a counselor, therapist or coach specializing in working with people with health challenges may help you de-stress as you realize you are NOT alone.
Practice impeccable self-care. Keep current with the latest advances of medicine. And learn to trust your inner voice to discern what’s right for you.
I am currently finishing week 30 of a 36-week protocol of triple-drug therapy for HCV.
Thank you so much for bring strong light to this overlooked underexposed vital issue.