Throughout my involvement with FixHep I have received extraordinary care by Dr James, Greg Jeffereys and the FixHep team. I have witnessed selfless effort to address the toll of HCV.
Many of us are of an age where we can painfully recall the cruel treatment meted out to HIV sufferers, the focus then being on the gay community. Individuals also waited for meds, and better meds, maintained themselves as best they could at huge personal cost and a horrifying toll. Finally, in the face of such inhumanity the collective mobilised themselves. An inspiring testament to our capacity as human beings – to look after each other.
Though HCV sufferers are greater in number we appear to have been less effective advocates of our cause – perhaps because due to our isolation in diversity and lacking a critical mass within a mutually supportive network, an active and existing subculture. It seems when individuals have “stumbled” upon an HCV forum – they have bonded in sharing their challenges with physical treatment and psychological alienation. However, the HCV experience being the primary basis of this bond – after successful treatment many individuals do just move on, some remain for a number of years and others longer. I imagine that this may be determined by the ongoing value of the shared experience and/or a desire to assist others.
Klhinde, my feeling is that individuals’ motivation to remain on this or any site is more likely to be based on the intrinsic satisfaction experienced around these issues rather than the sourcing of generics through Government agency. In fact the only occasion when I have seen a forum diminish has been as a result of interpersonal conflict or over controlling moderators. Though admittedly at no time have we been without the bonding dynamic of painful or absent treatment – so perhaps time will tell a different story.
I see a number of individuals here who feel strongly about the HCV cause and many of us know there is a long way to go before others throughout this global village have no need of treatment or some sanctuary. But if by some remote likelihood in the future; such support becomes sustained only by those remaining inflicted and this forum eventually winds up – no amount of wanting or anger against the greed which we experienced; will change how members lives’ demand or their spirit leads them.
Perhaps on a more pragmatic note; it seems it may be some time before everyone receives treatment; during which many mayl not wish to wait and there may always be some who wish to manage their health independently. Additionally, and more sadly numbers will re-generate whilst this disease is not managed globally; as is required for its ultimate containment.