thanks Cindi, appreciate your thoughtfulness. I have a lot on my plate at the moment so my forum attendance, & particularly my posting is likely to be a bit patchy. Im travelling ok on the sof/dac – few side effects, mainly fatigue, occasionally headache, fatigue and fizzing tongue (which I have explained to drs in the past, but get looked at like Ive peed on the carpet). In the past its sometimes been so severe I thought I might be having a stroke, particularly considering how crook I felt when it happened – usually at the end of a long, tiring work day when I can’t push myself any further. It seems from reading various threads, there appears to be no accounting for the odd variation of perceived symptoms reported around HCV.

regards to Buddy J. How is your friend, the Vet, going – is he able to get some help yet. take care. will catch up soon. Archer xx

I think we need to look at how we are confounding these factors – attributions are variously being made to HCV v treatment and IFN/riba treatment v DAAs. The only symptoms I have experienced are earlier menopause (ie mid-late 40s when the australian average age is 53). Subsequently I also experienced some hair thinning which frequently occurs with post menopausal women.

With the shock of menopause so early I researched and discovered that most HRT products contained the wrong balance of the three oestrogens and the progesterone with which it was necessarily opposed was usually progestin (a synthetic) – so no wonder a huge American study later found that it didn’t confer the cardiovascular and cancer protections manufacturers claimed. I arranged supply through a compounding chemist which obtained the properly balanced and genuine articles from Europe and prepared them in a good quality jojoba base.

Since commencing the DAAs I am actually losing my hair. Early in treatment (sof-dac) I noticed a greater than usual quantity of hair across the bathroom basin. Also constant loss through my hair brush. Its not like cancer hair loss which comes out in clumps leaving the scalp patchily bare – but I am losing so much that my hair is getting thinner and it is unusually dry.

As for skin/ products, I can’t tolerate most perfumess – I exfoliate 1-2 times weekly, use a non soap body gel for washing and 24hr aveeno body moisturiser. I use a bedhead shampoo and wella volume mousse conditioner for fine hair. When I apply some hair colour I go to a green krop hair salon which uses organic, least toxic products. I use La Roche-Posay facial cleanser, eye cream and face moisturiser including sun screen. Rarely used cosmetics – an occasional shallow brush of blush and lippie. So that’s me folks. All my secrets. Until last decade I never bothered with any additional care – just shower, wash hair and run.

It would never have been my intention to publish this information but felt I should join the girlie spirit of collectively gathering information. Ive never otherwise been much for cosmetic chat and I have an aversion to the TV commercials which demonstrate wealthy, glamorous women preening themselves with exorbitantly costly cosmetics and smugly stating ” Because Im Worth It”. What about all the poorer, hard working women out there burdened with multi-problem lives barely able to put food on the table, the silent heroes – too busy for the remote concept of worthiness.

Recently a friend suggested we might have judged the PBAC too harshly for initially denying approval of sofosbuvir – that we may have underestimated the negotiations needed to broker a deal sufficiently cost effective to treat so many HCV sufferers. Greatly respecting my friend – I gave this due consideration.

After all, I have been banging on about the immorality of a bureaucracy which approved the less costly simeprevir – but appeared silent on the warehousing of patients intolerant of IFN/simeprevir – seeming to leave them to die. I deplored a seeming failure to establish contingencies for those most at risk – succumbing to HCC, life-threatening complications & end stage disease.

Two weeks ago a very dear friend lost his battle with cirrhosis. After nearly four years of hospital visits, TACEs, and suffering – the wake celebrating his too short life was held only six days ago. During this time I received an interstate call about a friend whose symptoms were also becoming worse. Hospital admission & days of countless tests to determine why more than two months following his TACE, he was becoming so rapidly ill – They found more HCC and he too passed within days.

Two of several friends – who should have much earlier received the DAAs. I can find no rationale for such loss whilst treatment negotiations were being conducted. Maybe the prejudice with which we are “stigmatised” has generated some disregard for our welfare. There are cancer sufferers being given treatment matching Gilead’s costs simply to buy them more time – yet we were denied equal resourcing for a cure.

Surely the costs should not have been prohibitive. If the Buyer’s Club could get affordable pharmaceuticals from alternative sources – then why could the Government not have sourced, tested and provided safe treatment for this group of patients. Should Free Trade provisions bind a Government, when an avaricious Corporation is holding its citizens’ very lives to ransom.

For what seems as long as I can remember – this is the twilight endured by sufferers for whom IFN was ill advised. Now there is rejoicing – and rightly so; because the DAAs are approved. Thankfully humanity and sanity amongst all parties has finally prevailed.

But the casualties amongst those who were denied treatment when most at risk – are still mounting. They have not yet magically disappeared with the advent of DAAs. The “silent” legacy of the current health ministry.

Ironically, in the midst of such a tragic week – I received the news that I am UND. I feel grief for the many lost – yet also for the first time a tenuous daring to hope – that if I am very lucky – I might possibly survive. But however this crap shoot turns out – to be given a last throw of the dice – would not have been possible without the courage and tireless work of Dr Freeman & the Buyers Club.

To everyone who responded to my post; I thank you for your kindness.

In truth, had I remotely imagined that it would invoke such concern, I would likely not have written. I think my condition seems to be improving – I can breathe better. I was helped by an exceptionally caring doctor and am grateful. I was also offered alternate medical counsel due to the intervention of another member. All these individuals actively engage with Buyer’s Club forum – reflecting its generous spirit & exceptional human service.

Barry, thanks for your reply, Christmas since we last spoke. Iv’e watched you for some time now mate, other side of the outback – doing it real tough. You’ve never spared yourself – with complications & hard news – picked yourself up & fought on – I take my hat off to you. Family first, I know – so do what you have to – but lighten up a little, you endearingly stubborn bugger – be kinder to yourself. At least you’ve got the meds now – I hope you feel better, and as it goes, have whatever you need. Often think of you & the family. take care.

There are many angry – who got warehoused by the beaurocratic bullshit. Did it not occur to them to implement some strategy even at cost, for most at risk – whilst they did their wheeling & dealing. Meanwhile we waited & watched out for each other – and hoped to last the distance. Had a call last week for advice from Adelaide. How long & silent has been this epidemic till the tsunami began to break over us – yet still how little people know about HCV and how it proceeds. A friend with young children died last year – her husband told me – don’t wait – keep trying – or they “will” just wait till each crisis – and eventually its too late.

So it may have seemed surprising, when my first post disclosed that I balked when I finally got the meds – but with my HCV gone so far – I feared that even the treatment might overload my liver. Which is why whenever I even begin to have more complications (like last week) I am perhaps overly cautious. Cirrhosis can go to shite – very quickly. Thanks to the Buyer’s Club selection and testing protocols, (excluding life’s statistical outliers) there seems little reason for an “informed” person to become so advanced with HCV, that the treatment might pose a significant risk.

So here is the missing link – an “informed” person. The bureaucracy has now done its dealing – treatment is available. But how well informed are the public – about their diagnostic probability, the trajectory, complications & treatment of this disease. For years I saw nil health medium addressing HCV and more recently – poorly disseminated. Given the life threatening potential of this disease – How many undiagnosed people out there are really sufficiently informed?

Life and circumstances can change in a second. Do we yet know enough about what damage the virus is doing even in its earlier stages. Personally; Even if I was an early F1, F2 or F3 and the SVR numbers on Buyer’s Club treatments stack up – if I was well informed about HCV – and could conserve the funds from other life expenditures – I might not wait in the Public treatment queue – I would be inclined to purchase the treatment and eliminate this virus from my system at the earliest opportunity.

Excellent news Umair. Let us hope this progress continues. Do you know what your father’s platelet, ALT, AST & Bilirubin counts were when he started treatment. It is not necessary but just interesting to know how they have changed with the treatment. Did your Dr recommend the Riba every two daysI why ? I wish you well. Archer.

f–k the middle class westerners with their feet up, sipping chardonnay while they bang on about human rights.
If you had F4 HCV, ascites, varices, emerging liver lesions, were warehoused for the last 12-24 months because you needed ifn free drugs to survive – so you could keep pushing one foot in front of the other to feed your kids. Would you stand in front of a pharmacist to take the first lifesaving pill out of a bottle – too right – I would.

Ive briefly read – Despite the rosy picture of HIV drugs access in India which compared to other poorer countries was a credit to their health system for so long – in recent times the supply to the poor has become more unstable; citizens are turning up to the distributors and finding particular drugs comprising their regime are variously unavailable, often replacing some for another or taking multiple doses of those available.. They are being told to return which often involves a long walk or bus ride from an outer location, if they take the time off to do this they lose their jobs. so what do you do – get your drugs, lose your job, lose your livelihood, then cant afford the drugs, lose your life OR keep your job, cant get to the distributor, forget the drugs, feed your kids till you lose your life. I am uncertain of the veracity, time frame or full story around this and though interested, haven’t had time to look further. Some are saying that it is because the generics are going out of the country. Lets pray the financial return ends up exponentially supplementing back to the poor. No doubt on the generic profits, a country like India can soon manage to upgrade the production and subsequent supply to the population and elsewhere fairly rapidly. But meanwhile the human toll may still be high. So Big Pharma’s stronghold on the “western” marketshare is still backfiring on the poor.

There appears some parallels to what is happening with HCV. Because this explosion seems to have unexpectedly happened overnight. Also the fact that the cheaper drug prices in the 91 countries Big Pharma have given India to supply at lower prices; are still too expensive for many poor workers – just like us trying to buy Gilead at prices comparable prices here. Are there FixHep activists in those very poor countries able to shame their Governments and embarrass big Pharma to achieve a better deal. Unlikely. The politics of healthcare or greed ?