NZ Hep Foundation under investigation

This topic has 12 replies, 9 voices, and was last updated 8 years, 5 months ago by sabrecat.

Viewing 13 posts - 1 through 13 (of 13 total)

Author

Posts
4 July 2016 at 12:06 am #20405
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
Goodness me.
http://www.radionz.co.nz/news/national/307859/hepatitis-foundation-under-investigation

Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
4 July 2016 at 12:27 am #20409
Ariel
- Topics: 3
- Replies: 1,060
- Total: 1,063
- Guardian Angel
@ariel
Dreadful stuff, I just read the article Hazel
Just stinks really
Sad to hear of this
A

Edit also: I made my short statement with no agenda or judgement I feel sad for any issues at all affecting the hepatitis sufferers anywhere
I’m not one for nitpicking at all and felt sorry to read of any lens on this issue that might be negative at all to anyone
4 July 2016 at 1:30 am #20415
Tina-Hill-facebook
- Topics: 28
- Replies: 705
- Total: 733
- Guardian Angel
@tina-hill-facebook
Wow unbelievable and sad.

SVR 24
4 July 2016 at 2:27 am #20421
Matt-Kenney-google
- Topics: 1
- Replies: 423
- Total: 424
- Guardian Angel
@matt-kenney-google
Thanks Hazel,
Not surprising if it proves to be true, but definitely sad. We can only hope the “apparent” activities of a group like that one doesn’t somehow scare honest hearted people away from places like Fixhepc.

P.S. added… I agree totally with Gaj’s worries as stated below. Caution is in order. Notice I said in the above, “if” it proves to be true, and the “apparent” actions of the group under investigation. Remember, “innocent until proven guilty”
We don’t want to draw any unwanted attention or heat on anyone on this site.
Thanks Gaj.

GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”
4 July 2016 at 3:10 am #20423
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
I think we need to be cautious here. Easy to malign an organisation based on one complaint and media report. If there was/is a problem is it systemic or related to individual(s)? Anyway, hopefully some quick answers and it doesn’t further adversely effect the public’s perception of hepatitis in the process.

edit: as others comment, the annual returns are opaque so it’s good to know that Charities Services will investigate and hopefully clarify.

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
4 July 2016 at 3:31 am #20424
re_roll
- Topics: 8
- Replies: 120
- Total: 128
- Guardian Angel
@re_roll
G…well said. Misinformation (if applicable ) is a powerful tool plus
$$$$$$ talks, enough said….e.

contracted Gen 1a in the 70’s, dx in 2007…ast 27 to 35…alt 43 to 96…vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16…. lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later………….lab results 3/9/16 ast 21, alt 21, vl UND
56 days later………….lab results 4/6/16 ast 20, alt 22, vl UND
139 days later………..lab results 6/29/16 ast 28, alt 30, vl UND…EOT
SVR24
4 July 2016 at 3:54 am #20425
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
I just did an interview for it and all agreed there needs to be caution….and it must be a tough day for staff who have been doing what they can, but the publicly available figures there prompt comment from me.
$6m in real estate. Conference spending up from $21k to $115k, for Trustees, many of whom already have the conference fees covered by research money. $2.1 mil surplus, this year of all years, when there is actually something that money can be used for. They have done pretty much no media this year. The journalist asked what I would like to see done with the money. I said, why does there need to be a Hep Foundation? to see people cured of hepatitis- no other reason. What would be a good, measurable outcome for money well spent? people cured. What would be the best way to do that? Give the money to Dr Freeman and Redemption Trial as a fund for NZ’ers. Would save the country a fortune. $6 m of real estate is 2- 3 thousand lives.

Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
4 July 2016 at 8:45 am #20431
Dr James
- Topics: 264
- Replies: 1,968
- Total: 2,232
- Guardian Angel
@fixhepc
How on the one hand are you running a $2 million surplus but on the other hand closing down resource centres?

If that was a $2 million dollar deficit you could understand, but a surplus?

It appears that unlike in Australia there is not an annual report that provides some oversight of the books?

YMMV
4 July 2016 at 9:12 am #20433
Chapel
- Topics: 7
- Replies: 112
- Total: 119
- Guardian Angel
@chapel
The financials can be found here:

https://www.register.charities.govt.nz/CharitiesRegister/ViewCharity?accountId=e416ce99-de89-dc11-98a0-0015c5f3da29&searchId=9c50471c-0539-4dd0-8e20-995b3dc6e168

M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
4 July 2016 at 9:18 am #20434
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
”James-Freeman-facebook” wrote:

How on the one hand are you running a $2 million surplus but on the other hand closing down resource centres?”

It is confusing structures and different pockets of money. The Hep C resource centre that is closing down here gets no funding from the Hep Foundation- they are unconnected. There is also Hepatitis C New Zealand which is a different organisation again. The NZHF gets direct funding for screening and publications- not sure what else. Conferences etc.

Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
4 July 2016 at 9:34 am #20436
Dr James
- Topics: 264
- Replies: 1,968
- Total: 2,232
- Guardian Angel
@fixhepc
The reporting is opaque with respect to income although you would have to wonder if the source(s) of the education grants and the research contract trace back to Big Pharma. In Australia we do see that sort of sum donated by Pharma.

Operating revenue comprises:

Contract Income 3,456,405 3,956,205
Education Grants 210,000 154,500
Research Contract 0 133,184

YMMV
4 July 2016 at 9:41 am #20437
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
It seems it is the opacity that has prompted Charities Commission to take a closer look.

Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
4 July 2016 at 11:10 am #20438
sabrecat
- Topics: 2
- Replies: 258
- Total: 260
- Guardian Angel
@sabrecat
“Former chief executive John Hornell, who left the foundation last year after 17 years, said he could not discuss anything. He said he had signed a confidentiality agreement which prevented him talking about his time with the organisation or why he resigned.”

Not particularly commenting on the right or wrong of any allegations of impropriety, but – amazing, use of public money being questioned, and so we sign a ‘confidentiality agreement’ and plead the fifth (so to speak).

Hope this type of “don’t ask, I wont tell” stuff finds its way across the ditch.

J.
Author

Posts