3/30/2009 08:32| More
I have managed for several years a Swiss national HIV/AIDS project. This work gave me a closer insight into all aspects of HIV/AIDS and I have become familiar with the history of the HIV pandemic.
But why am I going to write about HIV/AIDS in the context of rare, neglected diseases, for HIV/AIDS does clearly not fit into that category?
AIDS was considered as a kind of a “rare disease” in its beginning: The pandemic became first manifest with a few cases of a new, not clearly understood fatal syndrome. Furthermore, it seemed limited to some social groups and therefore of no broader impact on society. Very quickly, though, what started as a “rare disease” became a pandemic.
For those affected, their families and friends the situation was dramatic and desperate. HIV/AIDS was an immense challenge, not only for MDs and scientists. The medical and scientific achievements after many years of struggle and hard work are impressive. It is important to emphasize that we owe these excellent results not exclusively to MDs and scientists. It was as much activists, NGOs and worldwide solidarity that made that success story possible – by promoting awareness, demonstrating solidarity, lobbying and by raising money.
What we can learn from the HIV/AIDS story applies not less to “proper” orphan diseases – continuous commitment of the patients, volunteers and NGOs pays off. It is crucial to create public awareness and to mobilize solidarity. There is almost no need to say, that it will – sooner or later – pay to invest generously into research.
Last not least, HIV/AIDS research has strongly promoted medical and bioscience research in general. That experience bears the message that all efforts and funds invested in the research on a badly understood – and perhaps rare and neglected – disease is a first class chance to advance science. Benefits could therefore turn out to be far broader than initially thought.
I wish that patients with rare diseases, their families and friends will find the attention and solidarity they deserve, on all levels – social, medical and scientific. The case of HIV/AIDS has demonstrated on a large scale how successfully a worldwide network of commitment and solidarity can work.
Ervan Rached, PhD