PIA: What's the problem?

[willo]

Hi all

I was diagnosed with CVID just over a year ago and advised to join PIA by my consultant. I found the support and advice from PIA and the contributors to the forum very useful.

I have picked up a feeling of dissatisfaction and disappointment with PIA in a few of the threads.

It might be useful to air the issues, which could feed through to our new association UKPIPS, if it wants to use the infomation. In any event I would find it interesting to find out how HGG - PIA is and was percieved by long time members.

Just a little confused at the moment

Hope you all stay well.

[susand]

Hi Willo and all,

The PiA was also recommended to me by my consultant in 2005. The hospital gave me a PiA folder with up to date information and contact details.
I became a member and they sent me some very useful booklets on CVID, Neutropenia, IgA deficiency and immunoglobulins.
On one occasion, feeling really down and confused, I called the Helpline (volunteeers who were/are living with a PID) and found it very supportive and useful.
The Welfare Officer at the time, Jenny (I think that was her name - correct me John?) produced a very complete and effective guide to claiming DLA, which could be downloaded through the website. It was excellent (and I was familiar with various guides due to my work). I think that she also helped individuals complete and present their claim if they required such help.
John (who you see popping up throughout this forum) at that time was also in the office of PiA and was another source of invaluable support, both practically and psychologically.

I became seriously ill toward the end of 2008 and so for two years rarely connected with PiA as I had too much else going on.

I noticed however, that there were marked changes in the organisation - in my perception, particularly around direct patient support and contact in comparism to what had been available beforehand.
What or who governed this, or why, in truth I do not know.

I see, though, that even as recently as last year, you found the support they did give you helpful.

I understand and agree that sharing experiences of dis-satisfaction or satisfaction is important, although it is difficult if you fall into the former camp. No-one wants to become involved in harsh criticism or indeed defamation. But somehow we do need to walk a middle path so we avoid the danger of creating an "us" and "them" attitude which ultimately will serve no-one fully, particularly not newly diagnosed patients.

If anyone feels that they can explain the roots of the PiA and indeed later it's shortfalls, in a way that is informative and devoid of personal emotion (I know, I know - just HOW difficult can that be!?) then it might be a useful and informative learning curve.
I think one of my concerns is how future PIDS people in search of support might, when/if PiA re-launches in the future ( and depending on its remit) find themselves confused, if there is a close overlap.

Just my thoughts on this matter,
May you all keep well,

Sue D

[liz2mac]

Hi Willo, it's nice to meet you. In the late 1980's a group of "patients" with what was then called HGG (CVID) who were mostly treated by Dr David Webster, got together and founded the HGG Society. Those founder members, including me, left when the other trustees decided to go to the membership asking them to fundraise for genetic therapy. We felt that it was putting out a false hope that gene therapy could help those of us living with HGG. In time the name of the organisation became the PiA and was welthy enough to employ Mr David Watters as CEO. My personal knowledge of this gentleman is that he was knowlegable and caring. I understand that he did some great work for us all through the PiA. Meanwhile I became a sleeping member of the PiA, so cannot comment about anything it then did, apart from watching it's annual financial reports over the last six or so years with increasing horror. Those of you who have run a business or have a financial background were probably watching it too. It started off with very comfortable reserves, but then started consistently spending above it's income and the reserves diminished rapidly. Whilst it was implied in the last newsletter that it had failed because of a major funder pulling the plug, it seems to me that they would have gone under financially anyway. Funders, particularly if they too are from the not for profit sector, have a duty to ensure that the money they donate will be effective and not "wasted". As to how the PiA treated it's members, I have been told some truly sad and disapointing stories over the last seven or so weeks. As I say, I had no personal experience, apart from some very helpful advice given to me by John when he was working with them.
Liz

[bubblemum]

I have just been reading the above posts and have found them all to be extremely articulate and helpful. Whatever went wrong at the pIA including funding, stories of hurt, lack of patient support etc I believe it to be so important that lessons have been learnt and that whatever the future holds for past and future members of a new organisation that grudges, wrongdoings etc are put to bed. This may be a very idealistic way of seeing things but if we don't there is a real danger of different factions pulling away and setting up their own groups instead of everyone pulling together. This seems to be happening already which is a real concern of mine.

Well done Liz,Sue and Bill again for your posts. I left the old pIA forum some years ago as personally I felt my right to a voice and opinion had been taken away from me with a proportion of members dominating the forum. It was with some trepidation then that I have joined on here under the direction of John. I hope that in the future I can be of help and support to others from my knowledge of immunodeficiency.

Very briefly I am the mother of Christopher, the second gene therapy bubble boy in 2001.
Rachel

[susand]

Hi Liz, Willo & Rachel.

I found your answer interesting Liz. I didn't know - or had forgotten - the roots of the original HGG group.

Rachel, could you tell us - or me - more about the gene therapy for a bubble baby? How old is Christopher?

I am not really aware of the feasability or possibility of gene therapy for all PIDs in the future. So little is known in reality that it would seem right minded to keep all doors open.
However invaluable research is - and I believe it is - patient support is equally important. There is much we can all contribute to the understanding of these conditions and the development of a "patient support" service.

Take care and have a good weekend,
Sue D

[s162216]

Hi,

Although with PID's such as SCID and Wiskott-Aldrich syndrome where the genetic causes are fairly constant and could be altered through gene therapy, sadly with CVID especially it would be nearly impossible to cure through gene therapy as there simply so many different varients of it known, over 40. This is because its a diagnosis of exclusion where the same symptoms are present but are because of different reasons from T-cell problems to simply just not producing antibodies, which hence means mutations on different genes. A cure might work for some but not for the majority of others and the genetic reason for most people is unknown.

Sam

[liz2mac]

Hi all,
all the posts have been so helpful. I so agree that we mustn't let past problems spoil the present and future. The PiA was what it was, it ended as it ended. So long as that is the end of that story we can all move onwards and upwords towards an organisation that fulfils our needs. I hope that UKPIPS will do that for all of us and with your support I am sure we will. Our major desire is to be very alert to the needs of all of us and to respond appropriatly to those needs. The only way we can do that is to get your honest feedback and to garner your help as well. Rachel it is SO good to hear from you. I'd love to hear more of the journey you've been on. If you don't want to do this on the open forum would you message me & we can make contact on a one to one basis if you'd like.
My understanding of how gene therapy works is very basic and is a simplistic version of what Sam has said. I understand that gene therapy can work if there is a single genetic fault that can be corrected by "mending" that one fault. Please understand that this is Liz's understanding and not a confirmed fact! I agree with everything Sam has said re CVID. I liveto be proved wrong but I think in the short term a "cure" for CVID is unlikely. My feeling is that we need to concentrate on easing the burdens associated with living with it and encourage others to undertake the incredibly expensive research. However, we're here to support anyone living with any type of PID. Mostly that may mean introducing them to other groups set up to support those with a specific PID other than antibody deficiency, but anything we can do, we're here to help.
Best wishes to you all,
Liz
Liz