Yesterday, Giving Tuesday, was just one day. The needs from charitable organizations raising money for chronic illnesses or rare diseases go far beyond this day, week, month or year. This money is needed not only for supporting patients and their families, but also to fund research.
It is urgent now because over the past year, federal support for research in the U.S. has contracted significantly. This has devastating impact on researchers’ ability to make discoveries deriving from cancer causing viruses to the Human Genome Project, but also in training the next generation of scientists and scholars.
As a biomedical researcher and professor of speech and hearing scientist at a major public university, I see this detrimental effect directly. It is a reversal of history.
Since the early 1950s, basic and clinical research in the U.S. has been funded for the most part by the federal government. World War II marks the beginning of the partnership between US universities and the government to conduct research on behalf of the people.
This was driven in part by the vision of Vannevar Bush, inventor, a bureaucrat who oversaw the creation of the Manhattan Project and whose famous report, “Science–the Endless Frontier” led to the creation of the National Science Foundation. His vision was to articulate the role of the government is supporting and growing scientific research, not only in funding better weapons of war.
Before that acknowledgment, science in this country was mostly an individual effort, requiring minimal funds and pursued by a select few. Wealthy patrons, religious institutions, and the few academies and universities supported such research, making slow progress.
It was not until the formation of the NSF and the National Cancer Institute in 1937 (which was the first institute of the plural National Institutes of Health, itself so named in 1948) was there a beneficial explosion in biomedical and social research – the Big Science.
What has Big Science brought us?
Discoveries have accelerated, people live longer and healthier lives and certainly, it has fed and clothed millions of people.
Because of the recent cuts, philanthropic institutions are increasingly stepping in to fill the gap, powered by both small donations and billionaires. My own research has been funded by various charitable organizations for the past two decades.
Like many biomedical researchers, I investigate prevalent but under-funded and under-studied disorders. Tinnitus affects 15% of the general population, with its prevalence increasing with age. Misophonia often begins in adolescence and has a devastating impact on nearly 5% of the population. Support from charity organizations has been instrumental in delineating the neural mechanisms of tinnitus and misophonia and identifying potential novel treatments
A lot of the increase in support for disease research– especially for rare diseases– is being driven by patient advocacy organizations. March of Dimes began with a mission of combating polio and now works to improve maternal and child health.
Rich philanthropists and corporations are investing in funded basic and clinical biomedical research, as are individual trusts like the Gates Foundation or the Chan-Zuckerberg. Their support is helpful, as often, they exceed the individual grants made by the NIH or the NSF.
Diseases and disorders are particularly attractive if the benefactors have a personal connection to the condition. This trend also speaks to the growing income inequality in the country and accumulation of immense wealth in the top 0.1% of the population. Fewer people have the most to give away.
The sources of such funding may be murky. The Sackler family, former owners of Purdue Pharmacy, recently agreed to pay $7 billion in an opioid settlement, going to victims.
The difference is previously being funded by tax-payer dollars meant researchers did not have to make moral judgments about the source of funding.
As federal funding for research contracts, observers expect growth in federal funding for prisons.
The country may return to the era when millions of Americans contributed dimes to fund polio research and now contribute dollars to keep the lights on for labs facing closure.
Such funds may never replace the large scale efforts such as the Allen Institute, which began with a $152 million donation from its founder Paul Allen, a billionaire co-founder of Microsoft Corporation. But, like the March of Dimes which began for polio research or any of the several rare disorders, pocket change makes a difference.
An individual contributing money to a reputed charitable organization assists in funding biomedical research, funds that go into sending that $5,000 seed grant to a graduate student or a $50,000 grant to a principal investigator.
Every dollar matters.