Touching teamwork to fight incurable disease

Those "ice bucket challenge" fundraising videos were nearly unavoidable. In 2014, it seemed like anyone on social media was dousing themselves in frigid water, then making a donation to find new treatments for ALS (amyotrophic lateral sclerosis).

The viral-in-a-good-way campaign raised $115 million, accelerating the battle against a terminal condition sometimes referred to as Lou Gehrig's disease for the baseball giant who succumbed to it. Now, another commendable fundraising innovation against ALS is happening in Minnesota.

After a longtime legislator's ALS diagnosis, Minnesota is joining the battle with a historic, state-funded $25 million contribution to fuel ALS research and help families with a loved one who has it. On Wednesday, Gov. Tim Walz signed the bill providing $20 million for research and $5 million to strengthen home health care support.

It was an emotional moment. "I am so proud of the Legislature for coming together in almost unanimous support of an issue that is bigger than all of us,'' said longtime Iron Range legislator David Tomassoni. The DFLer-turned-independent found out he has ALS last summer.

In his statement, Tomassoni, who now relies on assistive speech technology, also praised the bipartisan group of lawmakers who came together to pass the legislation. In an age of bitter division, this is an inspirational reminder that political collaboration remains possible and can yield pioneering solutions to daunting challenges.

There is no cure for ALS, and the "average survival from onset to death is 3-4 years," according to a 2016 medical journal article. About 5,000 Americans per year develop this disease.

The legislation merits celebration, but also a deeper, clear-eyed look. What's pioneering here is that a state government is providing a significant sum for medical research. That's typically a role shouldered by the federal government.

The National Institutes of Health (NIH) reports that it invests nearly $42 billion a year in medical research, awarding "almost 50,000 competitive grants to more than 300,000 researchers at more than 2,500 universities, medical schools, and other research institutions in every state." In addition, "about 10% of the NIH's budget supports projects conducted by nearly 6,000 scientists in its own laboratories."

Minnesota's investment in ALS research will come from the state's general fund and will work similarly. Beginning in 2023, researchers can apply for competitive grants from the state's Office of Higher Education. The dollars are restricted to "research facilities, universities, and health​ systems located in Minnesota."

Fortunately, Minnesota is home to four medical centers designated as "certified treatment centers of excellence" by the ALS Association. Those facilities are: Hennepin Healthcare, Mayo Clinic, M Health Fairview and the Minneapolis VA health care system.

There's some but not a lot of precedent for a state government directly funding medical research. One noteworthy example is the California Institute for Regenerative Medicine (CIRM). In 2004, the state's voters passed a ballot measure providing for $3 billion to accelerate stem cell research and fast-track next-generation treatments.

In 2020, California voters approved another ballot measure continuing CIRM's funding, suggesting that residents found this a worthy use of public resources.

NIH funding for ALS research this year is estimated at $115 million, with Minnesota medical centers competing against other researchers nationally for those dollars. So the state's move to add another $20 million for researchers here is significant.

"It will be able to catalyze a lot of the research efforts that are going on throughout the state with ALS,'' said Mayo Clinic's Dr. Nathan Staff. The dollars will aid both scientific understanding and early treatment trials, he added, and advances could yield insights valuable in the battle against other neurodegenerative diseases, such as Alzheimer's or Parkinson's.

The new funding may also have economic development benefit. Businesses could start or locate here if this ALS mobilization leads to breakthroughs.

The legislation raises fair questions about state funding for other diseases. The ALS initiative warrants follow-up evaluation to determine if it could serve as a model to fight other worthy medical battles.