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Dear Ms. Priddy:

As you are no doubt aware, the BC Strategy on Hepatitis Group is meeting on Monday, March 29, 1999. The Hepatitis C Community has been very patient in waiting for the government to do something constructive about this disease. We applauded the original idea of the Hepatitis Center of Excellence in 1997. Two years later we are still waiting.

The collapse of this project has largely, if not totally, been due to two problems: first, the egos of the people involved and their inability to overcome personality conflicts for the greater good of the health of their patients-the people that suffer from HCV; second, the inability of the separate organizations to work together as a cohesive unit.

This is a SHAMEFUL situation and the government must be severely chastised for allowing it to happen. It is time for you to get off of your collective butts and get this project going. We will no longer sit by and wait politely while the children bicker. Surely to goodness, it is not impossible to overcome petty differences when we are talking about the LIVES of people. These are not inanimate objects!!! They are living, breathing people. People whose qualities of lives are greatly reduced due to this disease.

This disease will cost the government and the people of this province GREATLY. Indecision and the lack of activity on your part will only increase that cost. We NEED a clinical trials network. The HIV CTN (Clinical Trials Network) 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. BC must take the initiative.

Two years ago, the HIV CTN put an offer on the table to begin an HCV registry. They offered to find the funding. That registry is still not operational!!!! WHY???? 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. This should be started tomorrow!! As well, genotyping is a critical component of effective treatment for HCV. The HIV CTN can do this genotyping. You are providing persons infected with HCV with substandard care as long as this is not done.

We want to see some action. We do not want to be placated or promised the moon. What we need and want is the best science that money can buy to help fight this disease. And we want more community representation with the BC Hepatitis Strategy Group. They have allowed us 3 members to participate after the strategy planning has been organized. We do not want a limit. We have only been allowed to have one community representative at the strategy meeting on Monday. We need more people involved at this stage. The time for you to act is now. Please intervene on our behalf and encourage the Vancouver/Richmond Health Board to open its doors to the HCV community.

Sincerely

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