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Re: email your congressman and newspapers

Re: email your congressman and newspapers

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Posted by thanbey on February 28, 2000 at 10:35:01:

In Reply to: email your congressman and newspapers posted by marion Walsh on February 25, 2000 at 20:15:25:

: There are 4 million of us walking around with hepatitis C. Not all know that they have it yet. We have got to get the message to the newspapers in each state we live in by writing to Letters to the editors in our local newspapers. If we can get to the young people to inform them that they should go to their doctors and ask them to give them an order for a hepatitis C test along with their normal blood work to find out if they have it, there are many that can be put in remission with the combo until a cure can be found. I called a couple HMOs in Florida and they said they pay for the test if the doctor orders it. The problem is getting the doctor to order it. There are so many doctors out there who do not know alot about hepatitis C. Not everyone that has hcv has any symptoms, if there is any ,it is being tired and perhaps muscle aches.We have to write to our state congressmen, senators, govenor and President making them realize how serious this virus is and asking them for their help in getting more funding for research for the cure of Hepatitis C. I can tell you from experience I had hepatitis C, I was lucky enough to get a liver transplant before I got liver cancer, but I still have HCV and it will gradually kill this liver if a cure is not found, so a liver transplant is not the final answer, a cure is. Write to those in authority, make our plight known .If we do not make these people aware of our problems they will not do anything. There is always something else more important. A sqwueaky wheel gets the oiling.

Dear Marion,

We disagree on only one point. We are otherwise in complete agreement.

I do not advocate screening and testing so that people can be treated wholesale. I do not agree that the 'combo" is the immediate response to a postitive HCv test. thr reasons are that very few people who test postitive will actually go onto liver damage and the need for a transplant IF:

we can educate them about the damage done to the liver by drinking alcohol, doing drugs, and smoking. I most cases, caught early, this would be enough to prevent damage to the liver which leads to transplants and disability.

the treatments, especially the one you advocate, have serious risks associated with them and may cause mmore problems than the HCV ever would.

Additionally, there are certain groups who should not take this drug at all. This group would include any wyoung woman wishing to have a future pregnancy.

I wholeheartedly agree about the lack of knowledge by primary care physicians. however, the CDC has issued a number of statements that primary care physicians take to mean that HCV is not a big deal.

I have personally had pointed disagreements with the CDC on the risk factors, particularly tattoos and sexual transmission, which they later concede (albeit grundgingly).

So, other than the recommendation to treat, particularly with a drug of dubious benefit, we are exactly on the same wavelength.

Physicians see that the treatments are not so good and therefore conclude that there is no point in routine screening and testing. In some states, public health is now seeing the need to offer testing at public health sites.

My theory is that is if we diagnos this early enough, we can
PREVENT serious disease in the majority of people IF they learn how to protect their liver. In the absence of a cure, or effective treatment, increasing liver donation, teaching how to protect liver health, and early screening and testing programs are the messages that will have the most impact (long-term).

Please feel free to contact me at info@hcop.org if you wish.



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