Re: Non-PD, NIH funding, LA TImes editorial (long)

[Bill Harrington <dopey@xxxxxxxxxxxx>]

Mary and listserv: Good article does it include pd figures anywhere?
Thanx,
Bill

At 05:47 AM 12/18/98 +0100, you wrote:
>On Monday, December 14, 1998, The LA Times ran a fine, long obituary of Mo
>Udall.  Also on that day, by coincidence, the following opinion piece was
>in the editorial section.  There is  no mention of the Udall bill, yet it's
>another voice addressing the issues in our on-going discussion of the
>"politics of medicine".  The author is Daniel S. Greenberg, a visiting
>scholar in the history of science, medicine and technology at the Johns
>Hopkins University.  Though he's not on our side, I think he summarizes
>well where we stand in the big picture.
>
>Mary Yost, age 50, diagnosed 42, symptoms 32, sinemet, mirapex, udalling,
>carolling, t'ai  chi, Barb Patterson Fan Club
>
>*     *     *     *     *     *     *     *     *     *     *     *     *
>*     *     *     *
>MEDICAL RESEARCH'S STAR SYSTEM
>HEALTH:  Politically correct diseases often get more than their rightful
>share of public funding.
>by Daniel S. Greenberg
>
>More than ever, lobbies of the afflicted are moving to influence spending
>on medical research, claiming neglect by an aloof and elite science
>establishment.
>
>In the complexities of modern biomedical research, however, the experts
>often do know best.  At a rapid pace and with promising early successes,
>research is moving deep into cells and genes.  But much of it is not
>specific to any disease or to the demands of the organizations clamoring
>for their particular disease.
>
>The object of dissatisfaction is the National Institutes of Health,
>paradoxically, the most beloved governmental agency, venerated by the
>public and both political parties, shielded from the budget ax and
>constantly badgered by disease-related organizations to do more about their
>specific concerns.  The politics of health research is now stacked with at
>least 40 such "advocacy" organizations, each dedicated to a serious medical
>disorder, from the rare to the prevalent.
>
>Most have established a Washington base with lobbyists.  Given the
>distressing circumstances that led to their creation, all understandably
>feel more should be done for their cause by NIH, the manager of the world's
>largest bankroll for health research:  $15.6 billion this year.
>
>Starting with the agitation that led to the wa r on cancer nearly 30 years
>ago, each political success has inspired other disease lobbies to intensify
>their efforts.  Relentless lobbying raised the appropriations tied to AIDS
>research from zero to $1.8 billion in 15 years.  Lobbying has quadrupled
>funds for breast cancer research in just a few years.  Spinal injury
>research has gained millions at NIH since actor Christopher Reeve was
>paralyzed and became its champion.
>
>Meanwhile, the lagging lobbies have resorted to "body count" analyses that
>compare NIH  spending with numbers of patients.   Most of the tabulations
>prepared by NIH are bureaucratic hokum, dished up to satisfy government
>requirements for labels  on spending.  While some research is focused on
>specific diseases, NIH puts most of its money into basic research that's
>relevant to multiple failings of the human body.
>
>But the dollar amounts attached to the various diseases do appear to be
>extremely unfair.  Thus, for research on diabetes, with a patient
>population estimated at 16 million, NIH spent $313 million in 1997, or
>$19.58 per patient.  For AIDS-related research, the comparable figures were
>775,000 patients, and $1.8  billion for research, or $2,403 per patient.
>For breast cancer, even with increased funding, 1.9 million patients and
>$409 million for research worked out to $209 per patient.
>
>The arithmetical inequities plus NIH's insistence that it knows best , led
>Congress last year to order an outside study of how NIH makes its plans and
>priorities.  The main product of that study was a recommendation, soon to
>be implemented, for the creation of a council "to facilitate interactions
>between NIH and the general public."
>
>The NIH management is wise in the ways of dealing with the advocacy groups,
>encouraging them to work for a bigger overall budget while keeping them
>distant from specific spending decisions.  NIH has generally done well in
>that briar patch, yielding its judgment to the lobbies only when the
>political heat becomes too  intense.
>
>A serious question has gone unasked, for example, about Reeve's  success in
>raising the budget for research to reverse his dreadful injury:     If
>promising research was ready to go but lacked money before Reeve appealed
>for it, why didn't NIIH get the money from its supportive friends in
>Congress?  If the research isn't promising, why risk wasting it?  The
>answer, of course, is that celebrity and politics dictacted more money,
>regardless of the scientific potential.   So far, medical  research has
>stood up well against the politics of disease advocacy.  The trends,
>however, are not in the right direction.
>
>