When the Sierra Leone Sickle Cell Disease
Society released its 2012 annual report recently (http://www.sleonesickle.org/2012AnnualReport.html) it reminded me that there has been
little progress in the treatment of sickle cell disease in recent times, even though
affected children in rich countries have been surviving well into adulthood. But
survival into adulthood does not necessarily guarantee relief from the
continuing anxiety induced by the threat of early mortality. Besides, other
severe, but not necessarily lethal complications of the disease, such as acute
severe pain and strokes and infection remain a constant blight on lives of patients,
whether they live in a rich country or in a poor one.
Doctors and researchers, worldwide,
are doing their damnedest to discover new and effective treatments for the
disease, but the promise of a magic bullet that cures all the ills of sickle
cell remains unfulfilled. That is perhaps not surprising because, the deeper we
dig, the more complex the sickle cell story becomes. When sickle cell became
the first “molecular” disease to be linked to the inheritance of an abnormal hemoglobin,
the blood pigment that carries oxygen and gives it its red colour, it was hoped
that the cure would not be long in coming. Those were simple times: All one had
to do, it was thought, was to discover or design a chemical that would engage the
wayward hemoglobin and force it to behave itself.
Now, it has become clear that the
out-of-control hemoglobin is just one part of the problem. The inheritance
package consists of not just hemoglobin, normal or abnormal, but, as well, of all
the other characteristics that make us who or what we are. Teasing out all the factors
that contribute to the bad act that sickle cell disease is has, since, become a
complicated business. And I am not even talking about the social aspects. I am
not going there. You can wrestle with that one yourself, considering that two
parents are required to produce the individual affected with sickle cell. I am talking biology here.
That brings me to the complexity and
anxieties surrounding big research. I was listening to a radio programme the
other day in which four experts were discussing the relevance and cost of current
research not only in the biological sciences, but also in the physical sciences
as well. The problem for physics, it was said, is that it has become too
theoretical to the point of being almost nonsensically abstract, whilst
biological science has become too big for its boots, claiming that it can cure
just about everything, from “making the blind see, the
crippled walk and the deaf hear” (I quote here), especially invoking the use of stem cells. Meanwhile, Big Pharma is going completely out of
control.
The remedy? Theoretical physicists
have to stop “stringing” us along a path to weird universes. And biology should
stop twittering on about stem cells and the marvels they can accomplish. As for
Big Pharma, it should stop holding the public to ransom with fabulously expensive
nostrums which even rich countries can ill afford.
What relevance do string theory,
stem cells and Big Pharma have with sickle cell disease? Well, at least some of
the money spent on research in these areas can be applied to research in sickle
cell disease. Some of this money can, hopefully, find its way to researchers in
Africa where the burden of the disease is greatest, and perhaps, combined with
the vast riches in the African eco-system, productive connections can be made
for effective therapies for the disease. That would be fantastic. After all, sickle cell is the human
genome’s response to the gauntlet thrown down at it by another forest-dweller,
the malaria parasite.
Too bad Bill Gates does not read
this blog.
Tell Fren Tru
Post Script: June 19 is World Sickle Cell Day
