Friday, January 17, 2014

The Shame of Biomedical Research in the US


Modified: January 16, 2014 at 1:58 pm • Published: January 16, 2014

c.2014 Hearst Newspapers

When the dark shadow of incurable disease settles across a life, it is
brightened only by the hope that science is on the job: The cavalry
will come.

Horribly the cavalry — researchers in the big pharmaceutical companies
and the government-run National Institutes of Health and the Centers
for Disease Control — may not even have mounted.

New drug development is a murky business governed by huge risks,
inertia, bureaucracy and politics.

I've been looking at the role of biomedical research and the
development of new therapies and drugs through the lens of one
disease, Chronic Fatigue Syndrome (CFS), also known as Myalgic

But it is symptomatic of the whole struggle for cures, which means
funds. It is a peephole into a system in chaos; where good intentions,
economic reality, public pressure, politics and bureaucratic apathy
play a role in where the research dollars go.

I've been writing about CFS for several years now, so I understand the
dilemmas those who are in charge of biomedical research in government
and private industry face.

It is a disease of the immune system, like AIDS, but it is mostly a
medical enigma. It is hard to diagnose because there are no normal
markers in blood or urine. It prostrates its victims essentially for
life. In its severest form, patients lie in bed in darkened rooms,
often feeling that their bones are going to explode. It cries out for
more research, as do many other little-understood diseases.

A very small coterie of physicians — maybe not many more than 50 in
the United States — specialize in CFS and have developed private
clinics for research into alleviating therapies. None of them are set
up to do major drug research in the way that pharmaceutical companies

Big Pharma — as the drug behemoths are known collectively — is at the
heart of new drug development, aided by preceding biomedical research
that takes place through government grants to researchers in
universities, teaching hospitals and private clinics. It is a complex

A new drug can cost over $1.2 billion to develop. It is a very
high-risk undertaking — maybe the riskiest investment decision made in
the private sector is developing a new drug. It is also a tortuous

1 comment:


CFS is a syndrome, like AIDS. It is not a disease.

CFS & AIDS are both syndromes.

A syndrome is a syndrome.