Discussion Forums > General Chatter
The Singapore Conference: Are you more likely to go if Andy is going?
Andy Battaglia:
I just posted this on Facebook in response to "are you going to Singapore?" I would appreciate the comments of those who would like to attend but cannot even dream of it financially.
What about equal access for patients to conferences or is that only for the org people? This conference has priced far too many patients out of going. It seems to be that unless you are sponsored that you can forget about going. I have talked to many patients who would love to go but the price is so far out of reach that it's not even in the realm of possibility. According to the registration requirements I can't go anyway because I have no patient whose documents I can produce.
Quite frankly this whole thing seems to be set up so that the org people can have a very nice time. So little is being done to allow regular patients the opportunity to attend. Please let me know when there is a conference intended for everyone. I really do not get the impression that this conference is intended for the regular folk. A successful conference would be one designed so that the maximum amount of patients could attend, as was the first conference I attended in Pune, India. This does not even appear to be a consideration for this conference. The dinner price is a total insult and reveals an elitist attitude among the organizers. Frankly, they should be ashamed at the price. I have never spent that much taking a family of 7 out to dinner, let alone for one person! Obviously, regular patients and their families are not expected at this dinner. Ashish was right. TIF is an org that needs to be replaced.
I realize my comments won't make me any friends among the org elite, but I have always been about the patients and not the orgs.
Have a lovely time.
Miaki:
Andy (please take a seat before reading this post and then perhaps have an oxygen tank near you incase of emergency. After reading this please note that I have not lost it but I'm trying to keep it together)
I would suggest we contact TIF to sponsor you :rotfl (sorry i am laughing but......) ANYWAY...... Yes i suggest we ALL pleed with TIF to sponsor you to attend as webmaster of the forum because TIF is all about THE PATIENTS ( somebody bring me some water please)
After all Mr Englezos has been elected as a Board Member of the prestigious European Patients’ Forum (EPF), a highly influential umbrella group of pan-European patient groups active in the field of public health and health advocacy. SO IF WE START EXPRESSING MORE OF WHAT WE WANT we would hope he would listen. Also just as Mr Englezos, ANDY YOU are just as important and vocal for all the patients on this forum and beyond.
Miaki
Andy Battaglia:
For some perspective on what patients think, when the Hong Kong thals needed advice on a letter to the Health Authority, they came to me, not TIF. When parents needed someone to write a letter to an adoption agency to plead their case to adopt a thal child, it was I who wrote the letter, not TIF. (The adoption was approved and I like to think my argument, based on that country's own child policies, had something to do with the balance weighing in favor of the adoptive parents). As much as I do that is visible in posts for this group, that is about half of what I actually do. I do just as much research to answer personal messages as I do for posts. Basically, I do almost anything asked of me by patients and families and friends. I would hope a full organization could try to keep up. As much good that TIF has the potential to do, it just isn't working as far as giving patients a place to find help. We have filled that role by volunteer work of the members and administration, not for some reward but because people need help. Very simple isn't it? What a concept. Maybe the world could learn a thing or two from us. Anyway, much of the focus of my post was on the fact that patients can't afford this conference. I wish TIF would demand that a location can provide sufficient reasonably priced accommodations before they agree to hold a conference there. I know patients who live fairly close to Singapore and travel expenses would not be a big issue but between the registration fee and hotels, there is no way they can manage it. So much of the content of the conferences is aimed at patients and families and it's a shame more of them can't go. I feel it is a very valuable experience for all and more of an effort should be made to make the conferences more realistic for people in terms of cost. It shouldn't be some elite gathering. From what Eponine has said, TIF does almost nothing to help organize the conference, leaving it up to a mostly volunteer organization to arrange the whole thing. Why can't TIF help arrange at least the accommodations? Find some general sponsorship to work out better deals with the hotels to make it an affordable venture for patients. The president of TIF has extensive experience in the tourism industry and perhaps that should be put to better use for the conferences. I don't want locales to be disqualified because the cost of living is high there, but if TIF is going to choose the locales, then they should do more to make it possible for patients to attend.
And I agree, Miaki. Patients have to speak up and speak loudly. The professionals assume they know what everyone wants and needs but often they miss the mark. Patients need to express exactly what they want. TIF should hear from people about making conferences an affordable experience for all.
I'll take that oxygen now. :wink
Miaki:
I HEAR YOUUUUUUUUUUUUUUUUUUUUUUUUUU I know who and what you do for the forum here.
My midnight your morning, meet me on msn (its a date :wink) assist me in writing a letter and I will send it off myself and post it on the forum here for all to see.
hmmmm i tried to find a oxygen mask emoticon but failed. However I'll buy you a Singapre Sling in Singapore, coz I know you will be there.
Miaki
Andy Battaglia:
I really wonder if TIF would be willing to help me considering that I am sometimes critical of their inability to connect directly with patients. I hope they can look past the criticism and see that I also think TIF has done much for thals in many ways and that we are both trying to do what we can to help thals. Honestly, Novartis is another that could/should offer some help. Although I am at times critical of the profit motive when it comes to life-saving meds, I also do much to help patients understand how to use their products and what to expect and that sometimes patience is required before results will show up in ferritin tests.
To any group or company that thinks I am too critical:
I am here for the patients first and when criticism is due I will not hesitate. I hope all (including myself) can benefit from criticism and can do a better job by working to become better at what we do. Criticism can be of great help and I hope no one will be oversensitive about it and hold it against me, as it is quite apparent that I am dedicated to helping thalassemics.
I am willing to take any help I can get in any facet of my work and would greatly appreciate if any company or group can reach out to our group with a helping hand.
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