Welcome
To
LeighAnn's
Hepatitis C Home
Welcome
To
LeighAnn's
Hepatitis C Home
The National Institutes of Health have released the 2002 Consensus Statement for Hepatitis C. This is a very important document as it is considered the Standard Bearer for Insurance Companies and most importantly for Doctors around the world.
To view the Consensus Statement you must have Acrobat Reader. 2002 CONSENSUS STATEMENT
According to the new Census report, released December 2001, the CDC now says there are 5,126,344 Americans infected with HCV. They also say that 2.8% of the population is infected. These numbers do not match when the math is done. In 2005, many top Hepatitis C Doctors agreed that the number if infected is much closer to 8 or 9 million.
A doctor at the CDC explains about the sentinal counties and that they just added 12 new counties and funding for more testing so they might be able to get a better count. The CDC takes its' numbers from these "sentinal counties" only.
The CDC admits that when it did this survey of "Sentinel Counties" back in 1998 to reach their 2.8% figure, they did NOT ask patients about any form of drug use, did not figure prison populations, which are at a 50% infection rate, nor did they include Veterans using VA facilities. It does not take into account the thousands of uninsured patients either. The CDC's calculation is assumed to be much lower than the TRUE amount of infected people in the USA. Recent studies have also shown that tattooing is most definitely a source of HCV transmission.
This leaves us still in the dark as to the correct number of infected people in the United States. WE do know that this number does not include Veterans, prison populations, and the uninsured. We will still have a battle both for research funds and for recognition of Hepatitis C as an emerging epidemic.
Another interesting note...Dr. Harold Margolis who heads up the Hepatitis section at the CDC stated in March 2001, at the Hepatitis Foundation International conference in Washington DC, that the CDC is well aware that they are doing nothing regarding awareness. (At least they admit sitting on their behinds). He blames that on funding, and pretty much leaves it up to us, the patient, as advocates to handle the awareness issues.
Some states have made HCV a required reportable disease, but it is up to the doctors to report it and it hasn't been reported well at all. The CDC states that they only "suggest" to states what should be reported and it is up to the individual states to decide whether or not to make a given disease a reportable disease. Approximately 15% of those infected will clear the virus on their own, usually not long after infection. The other 75% will go on to chronic infection. It is estimated that 70% of infected people are not aware they are infected with HCV. According to the World Health Organization, there are an estimated 250 Million people in the world with HCV and that number is growing each day. HCV is now 4 times more prevelant than HIV/AIDS. Each year 10,000 - 12,000 people die from HepC. In 1998 alone, over 13,000 people died from HCV or complications due to HCV. This number is expected to TRIPLE by the year 2010
The
Veterans Community has been hit hard by HCV. Recent studies show that 10%
of the Veteran Community are infected with the disease. This study, conducted
by Dr. Gary Roselle of the Department of Veterans Health Affairs in 1998
- 1999, showed that 63% of those are Vietnaam Era Veterans. With a total
Veteran population of 26 million, this means that of the 2.6 million Vets
infected, 1.6 million are Vietman Era Vets. Many of these men and women
are only just finding out they are infected and now are in a battle with
the VA for quality health care and disability. The VA does NOT rate HCV
for disability purposes at this time. Any Veteran who is now on a transplant
list should be getting 100% disability payments from the VA. If you are
not receiving this, you need to contact your local Veterans Center immediately.If
you get no help from them, contact your Congressman! It is his/her job
to help you. That is what they are elected and PAID to do. If they do not
help you, VOTE THEM OUT OF OFFICE!
HCV
is spread primarily by exposure to human blood.
You
may have gotten Hepatitis C if:
Hepatitis C is NOT spread by:
There is NO CURE AT THIS TIME, but more options in the way of treatment of Hepatitis C are coming out all the time. Interferon, Ribavarin, and Pegelated Interferon are the only options that have been approved by the FDA at this time, and the results are disappointing in most patients.Those with Genotype 2 or 3 seem to be responding in the largest numbers and many are keeping a Sustained Response, so it's possible that the new Peg Interferon's may do the trick for many people. Many doctors say they have achieved an 80% success rate, but when prodded to give sustained response rates, their numbers go down. Genotype is a very important factor in response to treatment. Studies have found that genotype 2 and 3 respond very well to Rebetron treatment in a 6 month time frame. Newer studies show even better response rates when using Pegasys (pegelated interferon). Genotype 1 seems to take longer, when it does respond, and treatment should be a full year regime.Unfortunately, many people with genotype 1 still are not responding to Pegelated Interferon either. More work needs to be done, concentrating on Genotype 1 non responders.
Two new versions of Interferon, one called PegIntron and put out by Schering-Plough was approved for use by the FDA on January 22, 2001. Pegasys by Roche Labs, is the other one. Both of these new versions of interferon have a time release added to it. You will only be taking 1 shot a week. Although the meds don't always erradicate the virus, it has been proven that they DO help improve liver histology. Fibrosis IS reversable. For this reason alone, people should seriously consider treatment as a way of slowing progression to end stage liver disease.
Other newer treatment options are on the horizon and many of them look promising. The HALT-C study being sponsored by the NIH has beenlooking at the long-term maintenance of Pegasys for those with fibrosis. This study is began in 2000 and should conclude in 2007, and is being conducted at 10 sites around the country. The results will be very interesting to see.
According to the doctors at the Digestive Disease Week 2000, held in San Diego in May 2000, they are considering triple combinations and anti-fibrotic treatments, in concurrance with interferon. It is not looking hopeless in the way of treatments and this disease CAN be managed!
Many herbs are known to be dangerous, even TOXIC to the liver. Studies must be done to find out what, if any, herbs will truly help and not harm the liver. Vitamin E is very good for the liver and Vitamin A is toxic. You really need to watch what you take and be well informed about it. At this time, no other form of treatment, including Liverite, have been proven to do anything to erradicate the virus or reverse liver damage. In fact, the company producing Liverite has been sued by the FDA for false claims.
No herbs have ever been known to bring down a viral load or eradicate the HepC virus and none are FDA approved!
Many herbs are being used to help with the symptoms and side effects of HCV, but you MUST be careful of what you are taking. There are many herbs that are TOXIC to the liver. Check into them carefully. New studies have shown that Milk Thistle is NOT good for the liver, as once thought. It inhibits the production of liver enzymes. If the liver cannot produce the enzymes it needs to work, liver failure will occur. It also causes low liver enzyme levels on blood work which more than likely will mean the enzymes are not being produced, not that the milk thistle is helping heal your liver.
Read the link below, print it out, take it to your doctor and discuss this with him/her. It is YOUR decision to take herbal remedies, and many can help with symptoms and side effects, but your Dr needs to be aware of what you are taking and you need to be aware that NONE of them have been proven to erradicate the virus or reverse liver damage.
An
estimated 70% of those infected with HCV go on to Chronic Hepatitis. An
esitmated 20% of those will go on to cirrhosis, liver cancer, and end-stage
liver disease. Most people will live with this chronic disease all their
lives. Others will progress to end stage disease and liver failure. The
only option at that point is Liver Transplant. There are over 25,000 people
on lists to receive a new liver, and approximately 4,000 organs available.
Luckily, they are now doing split liver transplants and live partial transplants.
Donor Awareness is the only way to help save these people. If you and your
family are not donors please take the time to consider the lives you may
save and become a Donor. It would be the greatest gift you could ever give
someone - the gift of life.
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Due to the HUGE amount of Spam mail I am receiving, I have been forced to remove my email address from this site. Hopefully, I'll be able to add it back at a later date. You can always contact me via the Yahoo Group link below.
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This site last updated on May 2, 3007.
This
site is designed for educational purposes only. I am NOT a medical professional,
only a Patient Advocate and former Support Group Leader. This information
is not intended to substitute for informed medical advice. Be sure to contact
your doctor regarding any and all medical advice before embarking on a
new regime.
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