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TOPIC: A sad story, most likely preventable

A sad story, most likely preventable 5 years 9 months ago #7347

  • dointime
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A distant acquaintance of mine recently died suddenly. I hadn't seen her lately but was told by a mutual friend that she looked a bit poorly a month ago, was admitted to hospital over Xmas and died before the New Year. Liver failure. A totally unexpected death in her late 50's. Her husband and children are in shock and devastated.

As you may imagine, this has left me with many questions. Did she not realise she was sick and she needed to go see her doc? Well, she may not have been thinking so clearly by that time. She was not big on drinking alcohol. Are they doing a post mortem? If they do one, will they specifically test for hepB and hepC, because otherwise they are not going to find it.

So here's the thing:
What if she is just one of the many unfortunates with no prior indications and no clue, who have been killed by the "silent killer"?
What if hepatitis was present but has not been identified?
What if her husband and children, who are busy with her funeral, need to be tested for hep but nobody has thought about it?
Only me.

dt
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A sad story, most likely preventable 5 years 9 months ago #7349

  • LondonGirl
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So sorry to read this DT. it may or may not be due to HepC, but I will say something, the powers that be are not doing nearly enough to test, support and TREAT this age group in particular. I do hope they investigate and keep an eye on that poor lady's family.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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A sad story, most likely preventable 5 years 9 months ago #7350

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I hope so too LG. You would think that in this day and age the medics would have a handle on it but I wonder. It has set me to thinking. How many of the undiagnosed are dying still undiagnosed? HepC just seems to slip through the cracks, again and again. How many opportunities are being missed to trace the contacts of those people and test them?

dt
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A sad story, most likely preventable 5 years 9 months ago #7351

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A very appropriate article for your post.

hepatitiscnewdrugs.blogspot.com/2016/01/...screening-could.html

Mike
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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A sad story, most likely preventable 5 years 9 months ago #7360

  • CJ
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I also wonder about this.
I'd say there's many people out there with the virus & just don't know.
Perhaps doctors should routinely test for the virus.
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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A sad story, most likely preventable 5 years 9 months ago #7364

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Hi CJ and dointime,

I agree, if there is the slightest whiff of liver changes, yes talk with the patient about their history and maybe the need to test for Hep C.

I think now that it appears more curable this discussion will be easier for people who previously would have been well and truly frightened about the whole thing. If this does not happen, the whole affair resembles the third world shambles that it has already become for many.

The underlaying message from your sad news needs to be heard.

yours


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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A sad story, most likely preventable 5 years 9 months ago #7399

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As in the article that Mike posted, enhanced screening would seem to be one of the cornerstones required for hepC eradication.
Routine screening is already carried out for breast cancer and bowel cancer in some populations, so how hard could it be to have routine screening for hepB and C, at least for the babyboomer generation (born 1945 -65), and preferably for everybody.

I believe that testing for hepC at the moment is entirely voluntary, which means that if you don't suspect you have it and you don't go and ask for the hepC antibody test then it will be missed, possibly until it is too late. My hepC was missed when I went to my doc complaining of feeling tired. My bloods all came up within normal limits and that was that. Hepatitis was never mentioned. That I found out at all was a complete fluke. My partner signed up for a wilderness expedition and agreed to have medical checks before he went. Unbeknown to him, the hepC test was one of the checks and it came up positive. BIG shock for both of us, but may have saved both our lives. I was then informed and went to my doc and asked for the test specifically.

After that happened, I contacted people I thought might be at risk. One person went to their STD clinic and asked to be checked 'for everything'. He was duly checked "for everything' and all came up clear. So I asked him if he had confirmed with the doc that they had checked for hepC. He hadn't. On return to that clinic he found out he had NOT been tested for hepC. He had to ask specifically for the test. Asking 'for everything' did not get it done.

I cite these examples from my own experiences to show how utterly easy it is to have hepC and for it to be missed. Leaving the test as simply a voluntary test for a person to ask for if they think they might have hepC, DOES NOT WORK. People don't suspect they have it. Or they assume that if a doc takes their blood then it will automatically be found. Or they assume that if hepC is indicated then the doc will suggest the test. But hepC very often does not show symptoms which indicate it, and many people have it who have never had a so-called risky lifestyle.

I'm willing to bet that this poor woman who I knew had never even heard of hepC, let alone suspected she might have it. Or she might have seen a call for testing on an ad on a bus stop and never in a million years associated it with herself. Routine mass screening is required, and the message to get tested needs to be put out there in a much more effective manner so that it reaches people like her.

dt
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A sad story, most likely preventable 5 years 9 months ago #7400

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You are exactly right dt,
A one-time antibody test should be SOP for people in the "at risk" age group or for anyone who has engaged in "risky" behavior.
I "came out" at a faculty meeting shortly after my dx. About half the teachers where I work fall in the 45-65 age group. I don't know if they took it to heart or not.
M
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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A sad story, most likely preventable 5 years 9 months ago #7401

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There is one way to get tested for people who do not want to walk in to their doc or clinic and ask.
You can donate blood.
All blood donations are now screened. If there is something wrong with your blood you will be notified. If it is fine then all that goes on your medical record is that you donated blood.

Mike, very courageous of you to 'come out' about it. That certainly helps to raise awareness and hopefully bring more people to get tested.
However not everybody feels ready for this level of disclosure. It is understandable if a person does not want to go and ask for the test because they might be asked awkward questions about why they think they might have hepC.

Nobody should feel that they need to disclose anything they do not wish to, in order to get their blood tested for hepC.
dt
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A sad story, most likely preventable 5 years 9 months ago #7402

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I'm finding that as I tell people about my status. The response tends be "no, not me!" when I mention that most baby boomers have some risk factors even if just from medical practices that while quite good in places like the UK, US and Aust*, just weren't as thorough and controlled as they are today with the better understanding that we now have. I also believe that a significant part of it is the fear associated with the poor chances of a cure in the past and the high/impossible costs of that cure until very recently. Many people just don't want to know about something like having this virus where they think they will have no control of its impact on their lives. The government hasn't really wanted to know either as it had limited means of control which was expensive and the public would be panicked if they thought so many were at risk. So much easier to pretend it doesn't exist while you can. <edit> oh, and I did the exact same for many years, knew in the back of my mind I had a risk factor but hey my annual check ups were always fine.....until they weren't.

But with the cure rates we are now seeing with DAAs and the pricing of generic versions we really need public education campaigns to find and treat those who need it. The pay back will be immediate and compounding from the reduced future health costs let alone the increased productivity and happiness of those cured.

* and likely many others I don't have the experience to comment on.
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 5 years 9 months ago by Gaj.
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A sad story, most likely preventable 5 years 9 months ago #7404

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dointime wrote:
However not everybody feels ready for this level of disclosure.
dt

Err...yes, which is where I fail the public education campaign part of my above speech. While I am now comfortable with telling friends and (most) family my situation and how I aquired it, I'm not ready to become 'poster boy' to the world at large. :(
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 5 years 9 months ago by Gaj.
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A sad story, most likely preventable 5 years 9 months ago #7410

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"The government hasn't really wanted to know either"

Absolutely. While paying lip service to the concept of screening they've been quietly thinking - good heavens, we can't afford to treat the people we know about, so what the hell are we going to do with all the people that the screening turns up?

For this reason, enhanced screening will only take place hand in hand with the availability of the new drugs. Countries still rationing the DAAs are not going to improve their screening any time soon. Which is SO WRONG. A person who knows they have hepC has the choice of leading a liver-friendly lifestyle until they can get treatment. Their condition can be monitored. Their life can be saved before it is too late.

I think that hepC screening needs to become a lot more sophisticated, technology wise and how it is administered. Nobody wants all the rigmarole of getting enmeshed in the medical services, and for good reason. The technology needs to develop a cheap test that can be administered on the spot and the results given right away. The setting for the test could be the same as for a flu jab or a diabetes test - the local pharmacy for example. No questions asked. The choice to have it done anonymously. A counselor on hand by request to interpret the result and advise.

I think it is about time that a fresh wind blew all through the way that hepC is dealt with. I hate how it is dominated by 'specialists' and takes place inside dismal clinics and hospital settings, how people are given what can feel like an inquisition about their situation. It is time that the more straightforward cases of hepc were devolved to GPs and treated by them from start to finish in the community, maybe with a specialist nurse out of a hospital. I'd like to feel like just a normal person going to my GP for a normal illness which he can't catch from me so long as he stays away from my blood. This will happen in time I think, but not soon enough for me,

dt
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A sad story, most likely preventable 5 years 9 months ago #7411

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Well, if the new urine test pans out, ;) then quick tests become a possibility. However, I think after having lived with the virus for a while we tend to forget how traumatic the initial impact of discovery was. So for most people, testing positive is going to be a major event in their lives requiring some support. At least until we get to the stage where the doctors can say "take one of these each morning for a week and everything will be fine".

Regarding the devolving of simple cases to GPs, that appears to be the model we are aiming for in Australia in a few months and with the DAAs it makes sense. I should imagine there will be other counties around the world looking on with interest at what happens so hopefully it all works well.
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 5 years 9 months ago by Gaj.
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A sad story, most likely preventable 5 years 9 months ago #7412

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GAJ wrote:
Well, if the new urine test pans out, ;) .....


That reminds me: I must head over to the smileys thread to request a 'groan' smiley :lol: .
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A sad story, most likely preventable 5 years 9 months ago #7444

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B)
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 5 years 9 months ago by Gaj.
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