The Aplastic Anaemia Trust turns 40 this year, and we have made a special treat for you to celebrate. We invited Professor Ted Gordon Smith to Kings Hospital to meet with Dr Austin Kulasekararaj and discuss treatment for aplastic anaemia and how it has improved.

In this third video, we learn about why The AAT started, who started it,  and what that had to do with tents.

Video transcript

Dr Austin: I'm wondering: We always love The Aplastic Anaemia Trust, and I know you were a  founding member of it. Tell us what stimulated you or what thought process went into it when you started The Aplastic Anaemia Trust?

Prof Ted: Well of course I’m not a founder member of it. The Trust was founded by people who were deeply involved with their family – patients who had aplastic anaemia or the allied conditions.  

When we started transplants in 1973, they had just found things called “the Trexler Tent”, which was a big tent, a big plastic tent in which the patient was supposed to be in a totally sterile environment, and totally serialised themselves, and this was provided by the leukaemia unit who were at that time ramping up the chemotherapy - not transplants, chemotherapy. And we were allowed to use those. And they were pretty horrendous for the patients.  

So family of the patients who were involved here – it was successful in some occasions but failures in others, they got together and said “Well, you ought to have better facilities. We will get together and support you and fund it.” So the founding members were really, of course, concerned families and patients. And we had an absolutely brilliant fundraiser who was also a friend called Phillip Goodwin who ran fundraising organisations like the triathlon where we all went to France and cycled around and had a marvellous time. But they raised huge sums of money, and we were able to employ people specifically for the management and investigation of this very rare condition, aplastic anaemia. 

Dr Austin: Thankfully it still remains rare! 

Prof Ted: At a time when of course everyone was interested in leukaemias and the treatments and things. So it’s the patients and the families who are the founders. 

Dr Austin: And what do you think is one thing which we should be doing through the AAT - large vision down the line?

Prof Ted: The need of patients with rare conditions is the communication between the families, that’s the first thing that helps people a lot. The second thing is to make sure the medical profession knows a lot about it! Because it is a rare condition as you know: one or two patients per year get the condition. Now of course, because people survive very well, the prevalence (the number of people who have aplastic anaemia, or have been exposed to it in their family,) is quite large. And they all need help and so on, which The AAT can provide. 

As advances come in to the management of blood disorders, and AA in particular, then I think there is a role for The AAT to fund  specific periods of investigation or to help in those things. 

I have always, and you touched upon it, I feel broadly now that we are able to rescue 80-90% of patients with aplastic anaemia, ie either cure them or treat them with ATG or ciclosporin, eltrombopag, to keep them alive and have a good quality of life - which is significantly changed from what it was in the 60s, 70s and 80s.