Dispelling old myths and discovering the hopes for those with hepatitis C
BY HEIDI EMMERLING MUÑOZ, PhD
"You have hepatitis C."
Those words turned my life upside down. I tell this story not to elicit sympathy but to illustrate what it means to live with hepatitis C (HCV): the physical as well as the emotional. Only now, because I am out of clinical hygiene and because there is a cure in sight, do I feel safe in telling my story.I also tell this story to urge screening and to give hope to anyone living with HCV.
Although this was only a routine well check and I was asymptomatic, I had three risk factors that caused my physician to order the screening:
• I was born in 1961.
• I was involved in clinical dentistry for many years.
• I had a blood transfusion in 1987.
The American Liver Foundation recommends baby boomers (born between 1945 and 1965) and recipients of blood transfusions prior to 1992 be screened because these populations have likely exposure before HCV was discovered. Health-care workers should be screened due to possible occupational exposure.
CDC statistics indicate more than 3 million people in the United States are infected with HCV, most being asymptomatic. Therefore, 75% of the people are undiagnosed. Although the virus itself does not kill people directly, it can attack the liver. Twelve thousand people per year die from HCV-related liver disease. The CDC states out of every 100 people who become infected with HCV, 75 to 85 will acquire a chronic infection, 60 to 70 will develop chronic liver disease, 5 to 20 will develop cirrhosis, and one to five will die of cirrhosis or liver cancer. According to the CDC, 17,000 Americans per year become infected with HCV.
In light of these potentially serious consequences - combined with the fact that in October the FDA is expected to approve a breakthrough treatment that is easily tolerated and boasts a 95% cure rate - now more than ever people should get tested.
The anticipated new treatment has people cheering. Until now, treatments have been poorly tolerated and ineffective. Back when I was diagnosed, I got the feeling my physician would have preferred to deliver a death sentence. It must have been difficult telling me that Rebetron (ribavirin and interferon) was agonizing and I might not be able to tolerate this chemotherapy. And, with only a 30% cure rate, more than likely it wouldn't work. But it was the best we had, and he was convinced I should undergo this treatment, so I did.
"Poorly tolerated" does not begin to describe the side effects experienced by most. Many are unable to complete it. Most have to forego work. What lay ahead was a 48-week sentence of self-administered interferon shots three times a week with the resultant chemotherapy side effects.
Some describe this as having the worst case of the flu imaginable every single day for a year. Another describes it as feeling 90 years old: fatigue, bone-chilling aches, anxiety, depression, nausea, diarrhea, and mental fogginess. Additionally, during treatment, I came to lose most of my hair and half of my body weight. I also became a human pin cushion; in addition to self-injections, I had blood drawn every month to check my viral load and CBC to make sure the treatment was suppressing the virus and to make sure I would not become anemic - another gift from ribavirin. Unfortunately, I would not be one of the lucky few for whom this torture would pay off. After 48 weeks of agony, I was back in my original predicament: living with the infection, the stigma, the worry.
Stigma and Transmission
The pain of treatment was nothing compared to dealing with the stigma. People often assume those with HCV are ignorant, dirty, undesirable, or promiscuous. I faced financial consequences and emotional repercussions from others who were ignorant and misinformed.
When I should have been focusing on my healing, I was worrying about the only livelihood I ever had: dentistry. Would my HCV status preclude me from working? According to my physician, the American Liver Foundation, and the CDC, the answer is a resounding no. According to the CDC, there have been no reports of an HCV transmission from an infected dental health-care professional to a patient in a dental health-care setting.
All health-care personnel, not just those who are HCV-positive, should follow strict aseptic techniques and standard precautions. Molinari and Cuny reiterate, "Adherences to standard precautions are considered adequate in controlling the spread of HCV from worker to patient. No work restrictions are recommended for HCV-infected health-care workers."
The main work restriction for HCV is tolerance to therapy rather than the virus itself. I could not afford to stay home and convalesce, which would have been ideal. While undergoing chemotherapy, there was a spike in sick days. There were days I simply couldn't get out of bed or couldn't complete the day. I needed more time off for doctor appointments, more frequent breaks, less time with patients. I continually requested more administrative work and less clinical work.
Unfortunately, the nature of dental hygiene provides little flexibility here. Obviously, my paycheck took a hit after I had exhausted my sick days. Additionally, I had to back out of commitments because I did not have the stamina or focus. Between the cost of treatment, a divorce, and significant loss of work, the financial hit was so hard, I faced another stigma: bankruptcy. Today, for a variety of reasons (a few related to HCV, most not), I have chosen not to renew my RDH license. For information on how I transitioned out of clinical dental hygiene, read "Help, Let Me Out!" in the May 2014 issue of RDH.
In addition to work difficulties, my personal life disintegrated. I felt a sense of shame as I listened to a friend unwittingly joke how Pamela Anderson was repulsive. Not because of her famously exaggerated cup size, but rather (and solely) because she had the misfortune of contracting HCV. Within a month of my diagnosis, my husband asked for a divorce. My worries about my health, the agony of treatment, financial devastation, losing friends and my husband: would I ever be able to crawl out?
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