Transparency needed for all research funding

There are few things as infuriating as wasted opportunity — except perhaps when it’s coupled with a waste of money.

And for taxpayers, especially those burdened by health issues brought about by disease, or who’ve lost loved ones to devastating illnesses, news that they funded an experiment aimed to simulate what it would sound like for a monkey to say “will you marry me?” in English should make their blood boil.

As the Herald’s Marie Szaniszlo reported, the White Coat Waste Project looked at 100 National Institute of Health press releases about taxpayer-funded studies costing nearly $250 million, and found that none complied with the Stevens Amendment, a law requiring disclosure of federal and nongovernmental funding.

That’s a quarter of a billion bucks, and who knows where it went?

Well, we know of one project, that vital primate proposal plan. That set taxpayers back a cool $3.75 million.

There were other experiments on monkeys, some of which involved cruelty and pain.

“Animal experimenters are flouting this disclosure law because they know taxpayers don’t want their money wasted on cruel and useless studies,” said Justin Goodman, vice president of advocacy and public policy for the White Coat Waste Project in Washington, D.C. “This is precisely why these transparency laws were put in place: to ensure that taxpayers can hold government accountable for how it spends their money.”

Cruel and useless studies — not where research tax dollars should be going, especially when there’s real work to be done in the battle against disease, and ordinary men and women doing their part in the fight.

Think about that $3.75 million monkey study the next time you support a breast cancer 5K, or donate to someone biking the New England Parkinson’s Ride, or making the MS Challenge Walk, or any of the host of other fundraisers aimed at raising cash for research.

And those are the diseases that have mainstream awareness. Lesser-known conditions are often left to scramble for vital funding — turning to patient advocacy groups to come up with seed money, and to plead their case before the NIH for more research dollars.

To its credit, the NIH offers guidance on its website for researchers needing help to find funding sources. But a scan of the advocacy organizations listed by Genetic and Rare Diseases Information Center as sources of financial support illustrates that good causes aren’t always first in line for the big bucks.

For example, the Aplastic Anemia MDS International Foundation offers two-year research grants of $30,000 per year to advance the understanding and treatment of bone marrow failure diseases. The Foundation for Prader-Willi Research offers one- to two-year grants for a maximum of $100,000.

And the monkey guys got $3.75 million.

In March, U.S. Sen. Joni Ernst (R-Iowa) introduced the Cost Openness and Spending Transparency Act to require all federalfunding recipients to comply with the Stevens Amendment. The bill also would give the Office of Management and Budget the authority to withhold funding for noncompliance.

This act needs to become law, stat. The sooner accountability is introduced to health-research funding, the sooner, hopefully, money can be allocated to worthy projects that can improve the lives of those struggling with disease — and the frustrating wait for a cure.