MORE Reflections from a Hepper at the 2005 Liver Meeting

This is just some ancilliary musings from AASLD

Hep C Awareness?

As my airport shuttle hit downtown San Francisco, I noticed banners adorning street lights which read, “Hepatitis Awareness Month – Get Tested.” These were done by the American Liver Foundation. I thought this was great – and a lot more action than I’d ever seen from this well-meaning organization – and clearly done in honor of the conference.

Given my little shoestring budget, I stayed in a hotel which was, while very clean, in an impoverished neighborhood. There were plenty of homeless, vagrants and a lot of people who likely struggle with drug addiction issues. As I walked down Mission St. to the conference, it was obvious that these banners went unnoticed by the very people whose lives might be effected - dare I say, saved - by getting tested.

Now this is my opinion (and you’re all entitled to it) … the mission of ALF is well intentioned, but these banners struck me with the same disappointment I felt at the last ALF fundraising dinner I attended: where they got through the entire night with only one mention of “hepatitis C” – when reading the mission. Disappointment at seeing money spent to welcome conventioneers, vs. actual awareness or efforts to provide HCV testing.

Service Organizations … anyone?

Anywho ... See y'all in about a week.

Got Hep C?

... get the straight up

... here.

Reflections from a Hepper from the 2005 Liver Meeting

What Liver Meeting?
The American Association for the Study of Liver Diseases (AASLD) is the professional association for liver docs (gastroenterologists). It’s a very important gathering where the latest research in liver disease is presented.

Potential New Treatments
The good news out of the meeting – lots of new potentials coming from the inhibitor family of drugs. The bad news – only 1– maybe 2% of them will make it to the FDA’s phase III clinical trial phase.

I certainly gained a healthy new respect for scientists, though. Imagine working on such a potentially exciting discovery, then have an unexpected turn down the road. Yet … when it does work – that 2% – would be pretty gratifying; clearly a go-for-broke situation.
This part of the research – small molecule drug discovery – is referred to as “basic science” – a term that strikes this girl as an oxymoron.

Same Treatments, Different Day
There was also lots of information on current treatments (what the docs call “standard of care”). It would have been great if there were a lot of new doctors there, but I suspect there wasn’t. These symposia would be great to take on the road. From what I’m told about doctor-patient interactions from people living with hep C, it’s clear that there is still way too much misinformation/ignorance out there.

For example, there are people being told to go on treatment by their doctor who’ve never even had a biopsy. But then I believe that the decision of whether or not to embark on this treatment journey belongs to the person living with hep C. But ... whaddo I know?

Since it's my opinion, and everyone's entitled to it, I mentioned this to a health care practitioner at the conference. This person’s position was that a patient wouldn’t understand all the issues. … scary, huh? I explained to this person that the issues in fact could be easily explained. I’m pretty sure I was understood.

More on this meeting, next week. Till next time, take care of your health, please don't drink alcohol (if you have hep C), and take it easy …

Got Hep C?

Get the straight up … here

Hep C Therapies: To treat or not to treat ...

... ah that is the question - isn't it?

There is a lot to think about when making this potentially life-changing decision. Among the considerations that can, understandably, be a bit overwhelming:

• Will it work?
• Which treatment?
• Side effects: Will I make it all the way through?
• Can I still work?

So ... will it work? Data out there - sloppily cited here - is that ya have about a 50-50 shot (pun intended, as there are injections involved).

You can check out the manufacturers' sites for their clinical trial data. I've added these to the links section.

Choosing a treatment - can be a pretty simple choice. There are 2 FDA-approved treatments out there that require only one shot a week: Pegasys, & Peg-Intron .

Finally ... one very important consideration:

NO TREATMENT AT ALL IS AN OPTION.

The straight up is that this may be one of the most life-changing decisions you’ll ever make.

So remember: it’s your decision – not your doctor’s, your friend’s, your Harley mechanic’s, your family’s, the mailman’s.

Let me know what you think - and till next time, take it easy.

Hep C: not just for your liver anymore

It kinda cracks me up when I read medical inserts or things written by so-called experts about the asymptomatic nature of hep C. There are plenty of symptoms, also referred to in the literature as "extra hepatic manifestations." Such as:

• Insomnia, for one ... thus inspiring this first blog topic.
• fatigue: the big one. No, you're not lazy. But, no, not everyone will believe you cuz, damn it, we still look good!
• joint swelling & stiffness: you'd swear you have arthritis. In fact, many people have found out about their hep C by having seen a rheumatologist (an arthritis doc).
• brain fog which is ... uh ... oh yea: drifting, kinda spaciness, sans the recreational drugs.
• liver pain: it's amazing how many liver docs (aka gastroenterologists) will insist that the liver cannot have pain, because it has no nerves. That's nice - but I don't care ... the damn thing hurts! The straight up is that we experience these incredibly sharp pains on the right side. It's quite unique: kinda like a gas pain ... or the one you got after running when you were little ... aw, forget it. It definitely gets your attention.

Speaking of which ... guess I've come right back to liver stuff, so I'll close for now.

This is, by no means, an exhaustive list. If there are others living with hep C: be it you, your ol' man, ol' lady, or other loved one who has it ... whatever ... feel free to share any symptoms you've experienced. That's it, for now ... straight up.

Got Hep C? Get the straight up.