Thursday, February 23, 2012

Me & Hep C:
I Am Part of the Next Big Epidemic

Today I start Hepatitis C treatment.  Monday I learned that Hepatitis C (HCV) now kills more Americans every year than HIV. These two facts have inspired me to share a story with you today.  You already know I live with HCV, but what you might not know about is my personal connection to people living with HIV.

As I write this, I am realizing that in many ways this is really a story about life coming around full circle...

Helping Other People

Growing up, I always wanted to help other people.

For a while I thought becoming a doctor would be the way to do this.  When I didn't get straight A's in college, I shifted my focus to allied health professional careers and began to research a career in pharmacy.  Then I got cancer and my college studies got interrupted.

After I had the good fortune to beat cancer, I returned to school after a four quarter hiatus to finish my undergraduate degree.  I went back to planning for my future too.  Turns out, having cancer helped me discover the field of social work, which turned out to be a perfect fit for my childhood aspirations.

Facing Down Deadly HIV/AIDS

When I began social work school in 1990, I decided I wanted to work with persons living with HIV and AIDS.  Back then a lot of people didn't want to work with AIDS patients because of the stigma associated with this viral illness.  But I wanted to work with this group because I felt I had something to contribute since they were facing a lot of the same issues I had faced as a cancer patient. I strove to blend the knowledge from my personal experiences with my professional education to help make a difference in other people's lives.

This hard, challenging and important work really appealed to me.

I spent nine years working with people living with HIV.  I was there to witness the enormous change treatment with antivirals drugs made in 1995.  These new life-saving medications turned HIV infection from a progressive, life-threatening disease to a manageable, chronic illness.  With the new medications, my work became more about helping people figure out how to live their lives with HIV and less about helping them face their death because of it. 

Along the way, my clients taught me, pushed me and helped me evolve into one really good social worker.  For this I will always be truly thankful to them.

Now Hepatitis C is the New Killer

Today I know that Hepatitis C (HCV) kills more Americans every year than HIV.  Given my past with HIV and my present with HCV, that headline truly took my breath away.

First I got angry because:
  • It's about damn time the medical community started understanding the true impact of HCV infection.  They know so much more about HIV than they know about HCV.
  • It's about damn time more effort was put into a public health campaign to help people identify their risk factors and encourage them to get tested for HCV.  Look how well the public health campaign for HIV has worked.
  • It's about damn time there are antiviral drugs for the treatment of HCV.  After all, antiviral drugs have been around since 1995 for HIV.
  • It's about damn time the public understood the seriousness of the HCV epidemic and the toll it takes, in both lives and money, on our society. We all know how devastating HIV has been; why are we letting another virus do this to us again?
Then I took a moment to connect with my grief as I felt the impact of this news on me personally.  I am one of the 3.2 million Americans living with Hepatitis C.  But unlike so many others, I know my HCV status.  I know because I became sick with acute hepatitis after I contracted this infection.  Thankfully, this knowledge has informed a lot of healthy choices since 1988, choices I have made in the name of protecting my liver and doing what I can to prevent the progression of this liver disease. 

But even all these healthy choices haven't been enough to prevent HCV from quietly taking away pieces of my health over the past 24 years.

Coming Full Circle

Then I started thinking about my beloved social worker career, the one I was forced to give up almost eight years ago because chronic pain and fatigue disabled me.  I thought about my path leading to my social work career (which I described for you above.)  That got me wondering if someone today will be inspired by this recent news to seek out a career helping people living with HCV.  People like me.

The funny thing is, for years now, I have known that HCV was going to be the next big epidemic.  This recent headline finally confirms this.  Instead of an "I told you so!" moment, I can honestly say I was taken aback by the emotional impact this information is having on me. I feel shocked, overwhelmed and saddened by this news.

Most of all, I don't want to become a casualty of this war.  I don't want to be a HCV disability or death statistic.  So today I start Hepatitis C treatment secure in the knowledge that this is the right course of action for me right now.  And I'm giving this all I got because I want to beat HCV.  

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New HCV Drugs said...

May your journey be safe and successful. As once a patient I can only recommended that you trust your instincts, and listen to your body. I have been following you on facebook-my page is boceprevir-telaprevir, and have often linked to your blog @HCV new drugs. You are an inspiration to the thousands of readers who have landed at Oh My Aches And Pains. Good luck
Always Tina

Chronic Marriage said...

Fantastic post Selena! I so admire your tenacity, courage and vulnerability in the face of HCV. Your words and voice are truly inspiring!