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From time to time, hepatitis C patients who are about to start treatment say, “I don’t want to get my hopes up.  To this I ask, “Why not?” When I was growing up, I was discouraged from having too much hope. “Don’t get your hopes up,” I was warned. My parents wanted to spare me from the sting of disappointment. However, high hopes, or low hopes, disappointment hurts.

However, I don’t think it hurts more if I aim high but end up with disappointing results.  In fact, aiming low and feeling pessimistic about my chances feels nearly as awful as not realizing my dreams. It makes much more sense to feel that wave of hope, gently luring me forward with potential promises.

So when I started hepatitis C treatment, I grasped hope as if it was a life preserver. It was the best decision I made. Did it hurt more when twice, I found out that treatment didn’t work? Absolutely not. Hope was still waiting in the wings, whispering, “Next time.”

This week I completed my 3rd hepatitis C treatment. Since I was participating in an interferon-free clinical trial, this course wasn’t too bad. It was also short—only 12 weeks. However, I did have some side effects, prompting me to write a list of twelve things I won’t miss about treatment:

1. Having to take pills, not just to treat hepatitis C, but to manage the side effects
2. Wondering if I took my pills, and despite implementing elaborate systems to help me remember, I still was late on some doses.
3. People asking me how much longer I will be doing this.
4. My skin looking like a dermatology photograph.
5. People asking me why I don’t feel better.
6. Blood draws—lots of them.
7. People telling me I look great, and assuming that I feel great too.
8. Medical appointments—I drive 4 hours one-way to Stanford. It is exhausting, and then I have to drive another 4 hours to return home.
9. Fatigue; not being as strong or as active as I am accustomed to.
10. Agitation and blaming my husband for everything.
11. My brain denying me access to information. Trying to remember things is like trying to deal with online banking after I’ve entered an incorrect password too many times. Sometimes I feel like my brain has locked me out.
12. Wondering why the box of cereal is in the refrigerator. Uh-oh, where did I put the milk?

Sunday, May 19 is the second national Hepatitis Testing Day. The purpose of this day is to promote screening for people who are at risk for viral hepatitis. Hepatitis Testing Day is also an opportunity to educate the public and to increase awareness about viral hepatitis. Millions of Americans have chronic hepatitis; most of them do not know they are infected.

According to the Centers for Disease Control and Prevention (CDC), hepatitis C testing is recommended for people who:

• Were born from 1945 through 1965
• Received donated blood or organs before 1992
• Have ever injected drugs, even if it was just once many years ago
• Have certain medical conditions, such as chronic liver disease and HIV or AIDS

Check the Centers for Disease Control and Prevention’s Hepatitis Testing Day page for events in your area.

National Hepatitis Testing Day in the United States is part of an educational initiative of CDC’s Division of Viral Hepatitis and the U.S. Department of Health & Human Services’ Combating the Silent Epidemic of Viral Hepatitis: Action Plan for the Prevention, Care & Treatment of Viral Hepatitis.

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There are days that having hepatitis C may feel like it weighs a ton; other days it weighs less. The heaviness of hepatitis C is relative to other factors—one’s health, age, attitude, level of fear, and so on.

When hepatitis C is at its heaviness, I re-evaluate my health decisions. Should I consider treatment? Am I active enough? How is my diet? Am I taking the right supplements? Is there pleasure in my life? Am I getting enough support? Is it time for a medical appointment? Is it time to consider treatment?

Usually the weight of hepatitis C is determined by how I carry the load. If I share my feelings about it with someone else, hepatitis C can feel as light as a feather.

The Centers for Disease Control and Prevention (CDC) estimate the number of people in the U.S. with chronic hepatitis C virus infection is 3.2 million. Other research places the figure closer to 5 million or more. The bottom line is this—there are a lot of people in the U.S. with hepatitis C. Worldwide, there are 150-170 million people with this virus.

The sheer numbers of hepatitis C-infected people is not our biggest problem. The greater concern is that as many as three out of four people with hepatitis C do not know they have it. In short, the majority of those with hepatitis C don’t know they harbor a potentially deadly virus—a virus that claims more lives in the U.S. than HIV does.

No diagnosis means patients aren’t aware that they risk infecting others. It may mean decreased quality of life. No diagnosis means no treatment. Diagnosis leads to choice, and choice leads to health. For instance, in the CDC’s efforts to gather better data, they learned that the majority of those who are hepatitis C antibody-positive admit to drinking an average of more than two drinks daily.

Baby Boomers, those born in the years 1945–1965 account for approximately three fourths of all hepatitis C infections in the United States. 1 in 30 Baby Boomers are infected.  Although Baby Boomers make-up nearly ¼ of the population, they suffer nearly ¾ of the deaths from hepatitis C. If we do not intervene in the next decade there will be one million cases of cirrhosis just from hepatitis C. This problem adds a huge burden to our healthcare dollars, which in the U.S. means an enormous Medicare bill.

The CDC has recommended one-time testing for all Baby Boomers. It is a great idea but one facing more obstacles than anticipated. For example:

• Many doctors and patients have not heard the screening recommendations.
• Some think that the screening recommendations don’t apply to them.
• People assume that their doctors have tested them for hepatitis C – usually this is not the case.
• Even worse, patents assume they were vaccinated for it – there is no vaccine

Here is what you can do: encourage everyone born between 1945-1965 to be tested for hepatitis C. Ask them to encourage others. If someone says, “Why should I be tested?  I don’t have any risk factors,” tell them, “It’s not how you lived—it is when you lived. Besides, aren’t you worth a $20 to $25 test?” That is a cheap price to pay for peace of mind.

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Talk to hepatitis C patients, and ask them if they are bothered upon hearing glowing remarks about their appearance, and chances are they will say yes. Although the comments are well intended, the recipient feels invalidated, not complimented. Also, we sometimes hide how we feel. Our society values beauty, strength, and productivity. When we can’t live up to those standard,s we conceal our illness.  When asked, “How are you?” we will often reply that we are fine—even if we aren’t.

We may have good reasons for not wanting to admit that we don’t feel well. It may be inappropriate in social or professional situations to be overly honest. President George H.W. Bush probably didn’t tell the Prime Minister of Japan that he wasn’t feeling well before emptying his stomach contents on Miyazawa. We expect our president to be invincible; we don’t want to see him sick, and he is unlikely to admit as such.

Although we aren’t heads of state, we may not want our bosses, neighbors, or casual acquaintances to know that we have HCV. We are vulnerable when we are ill and admitting we are sick makes us feel more vulnerable. Acting as if we are fine is a way to exert control in a situation over which we feel powerless.

It takes courage to admit being unwell. Recently a close friend asked me, “How are you?” I told her the truth, and it was more than she wanted to hear. She was just calling to borrow a cup of sugar. With tongue in cheek, she told me she’ll never ask me how I am again.

Perhaps we can’t get people to understand how difficult treatment is, or educate them on how their well-meaning remarks hurt, rather than help us. However, what we can do is use our yearning for sympathy and understanding to teach us how to be compassionate. One day I will ask my friend, “How are you?” and she will need me to listen to her answer. If nothing else, hepatitis C treatment has shown me how to be more sympathetic.

Here’s what I am wearing to the gym today and on Sunday, May 19, Hepatitis Screening Day:

Here is some compelling information about hepatitis C:

• Hepatitis C is the most common blood borne virus in the U.S., a virus that infects 3 to 5 million people depending on which data you trust. More people die in the U.S. from hepatitis C than from HIV.
• The majority of people who have it were born between 1945 and 1965. If this isn’t you, it may be someone you know—a parent, grandparent, child, or other loved one. Approximately 2% of the population has hepatitis C.
• If current trends continue, it is estimated that there will be a million cases of hepatitis C-related cirrhosis by 2020. Think about this. Think about what this will do to Medicare. Think about that this means to our loved ones. Think about what this means to you.
• How do people get hepatitis C? Blood transfusions before 1992 and history of injection drug use are the most common ways. Veterans are disproportionately affected because of unsafe vaccination practices, particularly in the 1960’s, 70’s and 80’s.
• There are other ways of acquiring hepatitis C, such as inhaled drugs, occupational risks, and long-term dialysis. Sexual transmission is a low among monogamous heterosexual couples but is a possible risk factor. A pregnant woman who has hepatitis C has about a 5% chance of passing it to her fetus.
• How people got hepatitis C is not the problem. The problem is that the majority of those with it do not know they have it. Hepatitis C is a disease that can be managed and treated. Alcohol use increased the risk of liver damage.

If you are a Baby Boomer, get tested. If you know a Baby Boomer, suggest that they get tested. hepatitis C can be treated, but you have to know you have it first.

Here is what I am wearing every day during Hepatitis Awareness Month:

Hepatitis Awareness Month begins today. For the next thirty-one days hepatitis activists, advocates, patients, consumers, mothers, fathers, sisters, brothers, children, and everyone who wants to make a difference will make an extra effort to increase hepatitis awareness.

Here is one small act you can take that will make a huge difference. Urge every Baby Boomer you know to get tested for hepatitis C. The majority of people who have hepatitis C were born in the years 1945-1965; up to 75% of those with hepatitis C do not know they are infected. We are talking about millions of people.

Everyone who receives an email from me also receives this message automatically added to my signature: The CDC recommends testing all Baby Boomers for hepatitis C. It is not only HOW you lived, it is WHEN you lived. If you were born from 1945 through 1965, or if you have any viral hepatitis risk factors, get tested.

Feel free to copy or modify it. Thank you for acting today.