Letter to Nevada Hep C Task Force
January 30, 2009 8:45pm
; 1-29-2009Catherine
Missouri
Nevada Legislators
Nevada House Of Representatives
Hepatitis CDear Sirs and Madams,
I am writing on behalf of the many Americans who are fighting this deadly disease. Hepatitis C has become a National Crisis, and the numbers of diagnosis are growing at an alarming rate. Unfortunately, the disease is commonly associated with IV drug use, and tattoos only. I was diagnosed with this disease in October of 2007. I have never used IV drugs, and I have no tattoos. I too believed in the stigma associated with this disease, that it is only something people who use drugs, or get tattoos get. I have since discovered that people from all walks of life, and all ages are becoming infected.
Every year the number of people infected with the Hepatitis C virus (HCV) increases by 30-40 lakh worldwide, adding to the 17 crore people already infected. The spurt in number is primarily attributed to low awareness about the disease.
The hepatitis C virus (HCV) is one of the most important causes of chronic liver disease in the United States. It accounts for about 15 percent of acute viral hepatitis, 60 to 70 percent of chronic hepatitis, and up to 50 percent of cirrhosis, end-stage liver disease, and liver cancer. Of the U.S. population, 1.6 percent, or an estimated 4.1 million Americans, have antibody to HCV (anti-HCV), indicating ongoing or previous infection with the virus. Hepatitis C causes an estimated 10,000 to 12,000 deaths annually in the United States.
If 100 people became infected with hepatitis C, approximately 25 people would be able to clear the virus without any medication within six months of being infected. The majority, however (the other 75 people), would develop ongoing (called "chronic") infection that will require medication to help get rid of it. Some people will unfortunately not know they are infected and will develop damage to their liver before the infection is diagnosed. Untreated, hepatitis C can lead to cirrhosis (scarring of the liver) or liver cancer and some may require a liver transplant
. Liver failure from chronic hepatitis C is one of the most common reasons for liver transplants in the United States. After 20 to 40 years, a small percentage of patients develop liver cancer. Hepatitis C is the cause of about half of cases of primary liver cancer in the developed world.Sporadic transmission, when the source of infection is unknown, is the basis for about 10 percent of acute hepatitis C cases and for 30 percent of chronic hepatitis C cases. These cases are usually referred to as sporadic or community-acquired infections. These infections may have come from exposure to the virus from cuts, wounds, or medical injections or procedures.
In many areas of the world, unsafe injection practices in the delivery of health care are an important and common cause of hepatitis C (and hepatitis B as well). Use of inadequately sterilized equipment, reuse of needles and syringes, and inadvertent contamination of medical infusions are unfortunately well-documented causes of transmission of hepatitis C. Careful attention to universal precautions and injection techniques should prevent this type of spread. In the United States, multiple-use vials are a frequent culprit in leading to medical-care linked spread of hepatitis C.
I personally was treated with combination therapy of peg interferon and ribavirin. The cost of this treatment for one month was $2,239.19 for the peg interferon and $982.70 for the ribavirin for one month. I had to take these treatments for 48 weeks, so the total for my treatment came to: $26,870.28 for the peg interferon, and $11,792.40 for the Ribavirin making the grand total; $38,662.68. Now, keep in mind that is just for the medication. I also had numerous visits to my GI Doctor, as well as a substantial amount of Lab work done. I also had to have a biopsy of my liver to see how much damage has already been done. I am now post treatment and disease free, but that could change. My doctor told me that I have to remain virus free for two years before I am considered cured. This disease hides in the liver and can go undetected for several months. Therefore, I am still having Lab work done on a regular basis. Luckily, I do have good insurance, but what about those who have this disease and have no insurance? The side effects of this combination treatment left me unable to perform daily tasks in a normal capacity. I don’t see how anyone going through this form of treatment could possibly work while undergoing such horrific side effects.
Few options exist for patients who either do not respond to therapy or who respond and later relapse. Patients who relapse after a course of interferon or peg interferon monotherapy may respond to a course of peg interferon and ribavirin combination therapy, particularly if they became and remained HCV RNA negative during the period of monotherapy. The response rates and optimal dose (800 vs. 1,000 mg to 1,200 mg of ribavirin) and duration (24 or 48 weeks) of peg interferon and ribavirin for relapse or previous nonresponder patients have not been defined. The algorithm for treatment given above is for treatment of naive patients.
An experimental approach to treatment of nonresponders is the use of long-term or maintenance peg interferon, which is feasible only if the peg interferon, is well tolerated and has a clear-cut effect on serum aminotransferase levels or liver histology, despite lack of clearance of HCV RNA. This approach is now under evaluation in long-term clinical trials in the United States. New medications and approaches to treatment are needed. Most promising for the future are the use of newer antivirals, such as RNA polymerase, helicase, or protease inhibitors.
I am asking that the Legislators in Nevada put a bill on the floor for Hepatitis C funding to find a better cure. I also would like to see a bill to help those less fortunate who do not have insurance, whereas the Center for Disease Control, or some state funded organization would offer either free or hugely discounted prices for these treatments. I’m not done yet. I also am asking for public acknowledgement of this disease. It is still a disease that carries a “stigma” of drug use, and dirty needles during tattooing procedures. So many people with this disease keep it a secret do to that stigma. What can you do as our Representative to raise awareness? I live in Missouri, and I also intend to send a like letter to our State Rep. as well. Thank you for taking the time to read my letter. I look forward to seeing the public being educated in this matter, as well as a realistic plan to get this disease under control, by offering state funded services to those who cannot afford the treatment, as well as to those who cannot work while undergoing the treatment.
I became aware of the upcoming event to raise awareness at Daily Strength.com which is a hepatitis C support group. This site has been a blessing to all of us who are going through this. We are all in the same boat, and we are people helping each other. Even though I am currently virus free, I intend to remain active in this group as there are newly diagnosed people coming to this site every day, scared, alone and looking for answers. The members are from all around America, Canada, and Australia presently. They are from all walks of life as well as from young children to the elderly population as well. I can take an educated guess and say that about 98% of the people in this support group have stated that they intend to keep their diagnosis a secret due to the stigma.
As you have read the numbers of infected people, I would take a guess and say that you probably know someone who has this disease, but are unaware due to the stigma associated with Hepatitis C. I kept my diagnosis a secret outside of family. Unfortunately I told a former associate about my disease, and this individual made it her mission to inform everyone who knows me or knows of me about my disease. She used this disease as a weapon against me!! All I could do was beat her to the punch and educate those who were brazen enough to inquire. Yes, I do have hepatitis C, and no I do not know how I got it, but I can tell you how I did not get it and that is tattooing or IV drug use! It is contracted from blood to blood infection only. Boxers are at high risk for this disease due to the mixing of blood in the ring. As a Mother, I have bandaged many young children’s bleeding knees, mouths, or whatever at baseball games, etc. Until I was diagnosed, I never thought twice about helping someone who was bleeding. Perhaps I had an open cut or scratch on my hands when helping a bleeding person. I’ll never know. Other groups at high risk of infection are the medical profession, police, and firefighters. Awareness that this is not just a drug user’s disease is extremely necessary now. Hepatitis C has become a worldwide crisis. Please see that a bill to raise awareness is placed on the House Floor.
Again I do appreciate the time you have taken to read my lengthy letter.
Respectfully Submitted,
Catherine
Missouri
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