Friday, March 26, 1999

Dear Member:

We are at a very important crossroad and we need your help. The Center of Excellence in Hepatitis was originally proposed 2 years ago. As you know, nothing came of that. This was largely due to personality conflicts, and political BS.

Now, there is a hope for a revival of that proposal. It is now called the Hepatitis Strategy of BC and is headed by a newcomer who is thought to be politically neutral. That newcomer is Dr. Mel Krajden from the BC LCDC. We have met with him and feel that he is working to better conditions for people with HCV.

We have asked that the Hepatitis C community be included in all phases but we are not entirely happy with the response that we have been given. We have been allowed three members to represent the community. It is not enough. We need to unite as a large group and pressure the government to act on this agenda & to get more of our community at the table.

It is very possible for several things to happen immediately. We have been working very closely with the HIV CTN (clinical trials network) at St Paul's. They offered to begin a registry on HCV 2 years ago. They even offered to find the funding. This registry would give us valuable information about the disease through the tracking of an infected person's disease states, treatment responses, viral loads, and so forth. The registry is still NOT operational. This is inexcusable.

We also need a clinical trials network-so that everyone of us can get into some kind of treatment program. The HIV CTN at St. Paul's has offered to use its existing infrastructure to add HCV to its mandate. We do not want to see a duplication of facilities. The money that is saved can go to further the research into HCV. In France the HIV mandate has been expanded to include HCV. The same thing should happen here.

Genotyping is a critical component of effective treatment for HCV. The HIV CTN can do this genotyping. As long as this is not being done, we are getting substandard care.

We would like you to send a letter to the Health Minister. We must put political pressure on the government to get moving on this agenda. We have the numbers if we can get everyone involved. So PLEASE-do your part. Let's flood the Health Minister's office with letters.

Sincerely

Darlene