I read the transcript of a panel discussion regarding Hepatitis C and bias. The facilitator was a Ph.D. who did not share her area of expertise. My bias is showing here. Is she knowledgeable about Hepatitis C or bias, or is she a facilitator for hire? The panel was a registered nurse, a social worker and a patient, all with Hepatitis C. Sounds promising.
But the summary of the discussion was this:
- We need more money from the government to educate people with Hepatitis C about treatments.
- We need more money from the government so we can support Hepatitis C patients in the same way HIV patients have been supported, with more teams (I am not clear as to what this statement means).
- The patient’s affirmation was “Sticks and stones may break my bones but words will never hurt me” and “I learned a lot from a support group made of fellow Hepatitis C patients”.
I am with the patient, the tools are within as opposed to without. If solutions tie to outside money or the government, no progress is made and we are stuck. But if a new patient begins his journey with only a support group and he feels like shit (which he will), the danger of isolation is there and almost guaranteed. I suggest adding a couple of strong friends or family members who can take turns helping you ride this bull, to keep you on for the eight seconds (treatment duration). Forgive my analogy, I am from Texas where that makes sense. Two wonderful people for me were my husband and the nurse. But, each patient experience is unique. Keep trying until you find who and what helps you the most.
The pharmaceutical companies are reaching out to the masses. They are talking about testing new treatments. The companies are portraying patients as members of society, people who the general population can relate to. Not just the parrot heads and junkies as portrayed in the past.
BTW, I overheard my first hepatologist refer to Hep C patients in the waiting room as parrot heads (followers of Jimmy Buffett). That was my introduction to the label. I shared my thoughts with him about that descriptor for patients.
The pharmaceutical company groundswell will reduce the stigma of having Hepatitis C. Sure the motive is profit. So who cares? Not a cured person like me (cured makes me sound like a ham). I worked in the pharmaceutical world for a quarter of a century. Research departments, when not linked to marketing, do great work. That is all I need to know. Let the insurance companies fight out the money issues. Give the insurance companies something to focus on other than patients. Oops, my damn bias is showing. I am curious to see how the “Affordable Care Act” (Obama Care) approaches Hepatitis C.
As the panel patient points out, it is my efforts that will provide my shield from stereotypes. At least until the drug company marketing departments get the job done.
check out http://www.hepatitiscnews.com where I, and other people with Hepatitis C, share information.