More people die every year from hepatitis C than from HIV. The first time I saw someone die from hepatitis C, I was in nursing school in 1994. The patient was thirty-five years old, with end-stage liver disease hastened by alcohol abuse. She was alert, kind-hearted and funny. Three days later, she was dead.
I didn’t know that you could die from hepatitis C, a condition I contracted in 1988 from a blood transfusion. My doctor told me not to worry about it, so I didn’t. However, it shook me up to watch someone die from a virus that I also had. I needed to know more about hepatitis C, and my self-serving curiosity morphed into a lifetime calling.
I saw many more people die from hepatitis C. For a long time I reassured patients, quoting statistical odds. “You are more likely to die with hepatitis C than of hepatitis C,” I said, as if these words provided comforted. At least I found them reassuring. I did not want to see any more people die from hepatitis C, nor did I want to be one.
Hepatitis C brings other things to worry about besides death. The human body does not withstand constant assault from a virus that replicates a trillion times a day without some consequences. People living with hepatitis C struggle with fatigue, depression, and cognitive difficulties, which are just a few of the common symptoms. To me, and perhaps others, quality of life matters as much as longevity does.
Nevertheless, I should have been more concerned about death from hepatitis C. In 2007, death from hepatitis C overtook HIV-related deaths in the U.S., a milestone that slipped by unnoticed and underreported. Since then, hepatitis C mortality continues to escalate, recently claiming the legendary musician, Lou Reed. He joins a long list of well-known people who have succumbed to hepatitis C-related deaths, such as Allen Ginsberg, Etta James, Ken Kesey, Evel Knievel, and Mickey Mantle.
The list of celebrities who are living with hepatitis C is even longer. You can look up their names, that is, the ones who have bravely made their hepatitis C status public. According to the Centers for Disease Control and Prevention, 3.2 million Americans are chronically infected with hepatitis C, so reason suggests that the number of famous people with hepatitis C is greater than Wikipedia mentions. Some people don’t want others to know that they have a disease that is highly stigmatized. And, some don’t know that they have hepatitis C.
This is the dark side of hepatitis C — the alarming reality that the majority of those with hepatitis C do not know that they have it, despite living with this virus for decades. The majority of those with hepatitis C were born from 1945 through 1965. Baby Boomers are in the beginning stages of Medicare eligibility; most are not there yet. However, they will be, and in less than twenty years, Medicare costs are expected to increase five-fold. The number of people with hepatitis C-related cirrhosis is expected to reach a million by 2020. Without proper diagnosis, more people will die.
Diagnosis opens the door of opportunity, since knowledge of hepatitis C brings choices. The liver is happier when we give up alcohol and stay fit and trim. Diagnosis brings recommendations such as hepatitis A and B immunization. Knowing how to prevent hepatitis C transmission empowers us to protect others. Most importantly, diagnosis leads to cure.
Yes, hepatitis C can be cured. Many, such as U.S. Representative Hank Johnson (GA), are now virus-free. Treatment has been steadily improving, and each generation of drugs brings progress and hope. The number of truly amazing hepatitis C treatments expected to be FDA-approved soon is proof that science is miraculous.
I am the benefactor of this miracle. After two grueling hepatitis C treatments, the third regimen worked, an all-oral combination of two experimental drugs plus one that is already used in treatment. I participated in a clinical trial because I couldn’t afford treatment. Hepatitis C is a pre-existing condition, rendering me uninsurable.
In January, I will have health insurance, and the fact that I am no longer infected with hepatitis C is a delightful irony. It means that I will be one of the healthy Americans that can contribute to the pool to support those with medical problems. It is a wonderful position to be in.
I am grateful to call myself cured, but my real luck began when I learned that I had hepatitis C soon after acquiring it. Knowing is better than not knowing. If you were born from 1945-1965, discuss hepatitis C testing with your medical provider. If you have it, get help. You do not need to go through this alone—millions of your fellow Americans are going through this with you.