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Medical awareness differs from country to country, and from community
to community. In the developing world, varying economic levels also make
vast differences between people’s medical knowledge and expectations,
and the new advances in medicine.
However, even in the developing world, educated people with hemophilia
keep asking, “When will gene therapy be available to cure hemophilia?”
This question implies three things:
1. These people have no doubt that gene therapy will provide the cure
for hemophilia.
2. They believe that gene therapy will be available to them.
3. It is only a matter of time before gene therapy arrives on their
door steps.
I believe that these three statements also represent the attitude of
the entire developing world on the question of a cure for hemophilia through
gene therapy.
 But
how will this technology reach people? The developing world has neither
the resources nor the will to invest in pure research. It did not invest
in other fields of research either, but sooner or later received the techniques.
I think that gene therapy will happen in exactly the same way. There are
research centers in many developing countries that have created some basic
infrastructure for work on genetics. When the time is right, and research
in the developed world has reached a certain level, these research centers
will start developing the right technology, applicable to their own countries.
The developed world is not designing gene manipulation and transplantation
techniques with the constraints of the developing world in mind. The primary
concern today is to develop safe and effective methods of gene transfer,
with maximum speed. Money is not a major deciding factor just now. But
once the basic research has attained a certain level, cost will become
a major concern. At that time, the developing world will come into focus
as an emerging and evolving market. And in this era of the global village,
the time lag between advanced technology being available in the developed
world, and in the developing world, is constantly shrinking.
In the worst possible scenario, from the date gene therapy first becomes
available anywhere in the West, I do not foresee it being available in
India for more than a decade. And in India, where most of those with hemophilia
still live (or die) on plasma and cryoprecipitate, it isn’t too much to
wait ten years for gene therapy. It is possible that people may never
be able to afford gene therapy. What really matters is the belief that
one day we will be rid of hemophilia because of gene therapy. It is this
belief alone that gives hope to many with hemophilia—hope to carry on
with their lives from day to day.
Ashok Verma, who has severe hemophilia, is Founder and Executive Director
of Hemophilia Federation (India), the world’s largest registered hemophilia
society. In 1983 Ashok founded the HFI, which has grown from one to 65
chapters nationwide. Ashok serves on the WFH Executive Board, and in December
2001 was honored as L.I.G.H.T.’s Leader of the Year. |
