The Hep C Connection
Statement on Hepatitis C
My name is Ann Jesse and I am the Director of the Hep C Connection, a national hepatitis C network and support system. I appear before you today as one of our nation's many hepatitis C-challenged individuals to sound a very personal alarm. Are you aware that viral hepatitis C is an equal opportunity infector that has the potential of wreaking havoc on people of all ages, genders, races and sexual orientation? BEWARE, for my story could be yours.
In February 1994, stunned by my brother's sudden death from galloping viral pneumonia, I made an appointment for an overdue, routine checkup. In short order, I was informed by my internist - via impersonal voice mail communique - that I had tested positive for hepatitis C. He urged me to return for more tests and warned my husband to use condoms. This was by no means an optimum way to be informed that I was infected with a chronic, incurable liver disease - a disease that I had never heard of until that abrupt telephone alert. This was about as devastating as a wakeup call can get. A quick review of my past medical records convinced me and my primary care physician that a planned surgical procedure, involving a massive blood transfusion in 1973, was the probable contraction culprit. If this, indeed, was the case, my liver had already been under viral siege for 25 years. Although my liver enzymes were extremely high, I was feeling perfectly well and symptom-free in February 1994. Little did I dream what an earth-shattering impact our nation's tainted blood supply would have on my life. In fact, I appear
before you as a living example of why the proposed "look back" programs should certainly go back beyond 1990. Remember, I am a 1973 transfusion victim! Although I am an innocent transfusion victim in what has become my family's hepatitis C saga, I quickly decided that the victim role would not cut it for me. My approach, therefore, to making lemonade out of this lemon was:
- To research appropriate lifestyle modifications to promote liver wellness.
- To learn all I could about available treatment for hepatitis C.
- To pioneer the establishment of a much needed hepatitis C network and support system.
The organization I envisioned took flight. The Hep C Connection has assumed a national thrust and now features an 800 number hepatitis Help Line. That number is 1-800-390-1202. This line primarily responds to the special need of blood bank donors who have tested positive for hepatitis B and C. Although my life has, in many ways, been turned upside down by hepatitis C there is good news on my horizon. The organization I worked hard to get off the ground now meets the needs of thousands of Hep C challenged individuals nationwide.
I also learned a great deal about my liver and my disease. My high liver enzymes were literally giving my doctor nightmares. My husband, an episcopal priest, looked on nervously. My first attempt at treatment failed. However, I have had the opportunity
to undergo treatment again. I participate in an interferon A/ribavirin treatment protocol and am happy to report that I am responding to the new combination treatment beautifully: I have been virus-free for the first 6 months of this one-year trial. Needless to say, I am cautiously optimistic.
Just for the record, I am still on treatment, and fatigue, muscle weakness and aching joints aside, I appear to be up to today's Congressional Hearing challenge. But believe me, I am one of the lucky ones. Most hepatitis C victims do not even know they are infected, few have received even one course of treatment and many do not respond to therapy. Many more do not have the energy to stand up and be counted. These are the individuals who are counting on the government to take a more active role in combating this often-misunderstood public health threat. Rest assured there is much work to be done in the hepatitis C trenches. Physicians across the country must receive hepatitis C education and be prepared to test patients at risk for the hepatitis C virus, having first brought these individuals up to speed on disease risks, symptoms and the available treatment opinion (and PLEASE no more diagnosis alerts by voice mail!). In addition, a concerted effort MUST be made to clean up our nation's blood supply.
I urge you all to take advantage of my wake-up call. Time is of the essence as viral hepatitis C threatens more and more unsuspecting U.S. citizens. Thank you.