For one without sponsorship, the International Thalassemia Conference, 2008 held In Singapore was an expensive undertaking. I am a constant proponent of the idea that conferences should be made affordable in order to maximize attendance and participation by thalassemia patients, families and supporters, but the costs involved in holding a conference in a relatively expensive area of Asia, prohibited many from attending. While the turnout of medical professionals was good, the amount of patients and parents was down greatly from the last conference held in 2006 in Dubai. This is a problem that needs to be recognized by TIF (Thalassaemia International Federation), and either more sponsorship need to be made available through TIF and the various national thalassemia associations around the world, or TIF should make more of an effort to hold conferences in less expensive areas, or TIF can look forward to a continuously dropping attendance by patients and parents. Cost of travel is up due to fuel costs, hotels in Singapore are fairly expensive and even the conference fees were higher than for Dubai. In addition, many attendees felt they got less in terms of conference content and also in the daily lunches. When compared to the Dubai conference, the lunches were lacking. At Dubai, the lunches were held in a large banquet room with dozens of large tables where people could meet new people daily, just by trying to find some seats at a table. It was common to sit with a different group every day and it created a social context that was missing at Singapore. Instead of a large buffet we were given box lunches with little variety available. There was no place designated for meals so most ate sitting on the floor in small groups. There was none of the interaction that took place in Dubai. I think this is something that the organizers completely overlooked even though it was encouraged beforehand that the lunches should have a strong social context.
I found the content of the programs a bit lacking, as many of the presentations were repeats of what has been heard at other conferences and some presentations repeated what had already been covered by other doctors at this conference. However, this was not the main problem. Less than one week before the conference was to begin, we were informed through third parties that only medical professionals would be allowed to attend the scientific presentations, apparently due to some interpretation of Singapore regulations. This completely violates the concept of patient rights and it was quite ironic that one of the programs to be held in the doctors-only room was entitled Patient Rights. Patients do have a right to all information about their condition and also all information about various treatments. To prohibit patients from attending medical presentations at a thalassemia conference undermines the very purpose of the conference along with violating their rights. We were told “The reason for this strict rules and regulations is to protect the lay people as they are not medically trained to make an informed choice for themselves.” The very purpose of the conference is to help people become more informed so that they can make informed choices about their care. This is a big issue and TIF needs to ensure that this is never repeated. Any country holding a conference should have to guarantee that all attendees would be able to attend all programs. If not, that country should not be allowed to be a host.
In spite of the problems, I did have a good conference as I worked to meet various doctors and introduce them to patients with many questions, I met many old and new friends, and also had some very good talks and made good contacts with representatives from several different companies involved in thalassemia treatment and research. I also attended some excellent presentations and found the talk by Dr. John Wood on treatment of congestive heart failure in thalassemics, to be one that should be distributed on CD to every hospital in the world that treats thalassemics. Many lives will be saved if the procedures he outlined were followed.
Much of what one gets out of a conference is directly related to how much effort is made and I saw many making the effort. When things aren’t ideal, one may have to work harder but rewards can be found and the conference can still be a successful event. I feel that the Singapore conference was a valuable experience for both myself and the other members of thalpal who attended. The members of thalpal were some of the busiest and most active attendees and you could find them attending presentations, talking to doctors and company reps and some of us were fortunate enough to be hosted at Puja and Vishal's home in what can be described as the very first organized meeting of the thalpals. Our group was a definite presence at the conference and this bodes well for the future.
(Prepared as a comment for another report. Reprinted here).