Sunday, July 12, 1998

Not all disease carries same political clout

A blue-ribbon panel of scientists has affirmed what everybody already knew: Some diseases have more political clout than others when it comes to obtaining federal research dollars.

The usual example is AIDS, a vocal, well-organized lobby able to dazzle Congress with entertainment celebrities.

The National Institutes of Health spends approximately $43,000 per death researching AIDS and HIV while heart disease, which kills over 20 times as many people each year, warrants only $1,160.

Breast cancer is another disease that has benefited from a powerful lobby.

But the disparity also applies to other ailments not so often in the spotlight. Kidney disease, for example, kills 24,000 a year, septicemia - blood poisoning - about 21,000.

Yet, per death spending on kidney research is $13, 400, septicemia, $509.

Disease lobbyists

In the short term, the disease lobbyists have been great for the NIH budget, now $13.6 billion and up 80 percent since 1990 while most other domestic spending has increased only 48 percent.

Long range, there are potential problems because that same political pressure could easily lead Congress into micromanaging who conducts the research and where and into what.

There probably is no single, correct solution to directing medical research funds; certainly, dollars per death has its limitations.

And the choices are only easy at a safe distance.

If you're the one with a lethal disease, any amount is too little.

But bowing to the lobbies with the biggest stars and the most heart-breaking anecdotes is ultimately wasteful.

The panel that conducted the study, an arm of the National Academy of Sciences, has some sensible suggestions to guide Congress and the NIH. One is to set priorities, targeting at the top the diseases with the greatest impact on public health in terms of death tolls and cost of patient care.

Another is to put research money into fields where progress is most promising.

Finally, the panel urges that NIH set up advisory panels so the disease lobbyists - the preferred term is "patient advocates" - have a voice on the inside so they can make their case directly rather than through a press conference on the Capitol steps.