Touching teamwork to fight incurable diseases

Those “ice bucket challenge” fundraising videos were almost inevitable. In 2014 it seemed like anyone on social media doused themselves with ice water, then donated to find new treatments for ALS (amyotrophic lateral sclerosis).

The Viral Good Sense campaign raised $115 million, accelerating the battle against a terminal illness sometimes called Lou Gehrig’s disease for the baseball giant who succumbed to it. Now, another laudable ALS fundraising innovation is happening in Minnesota.

After a longtime lawmaker is diagnosed with ALS, Minnesota is joining the fight with a historic $25 million state-funded contribution to fuel ALS research and help families with a loved one in is reached. On Wednesday, Governor Tim Walz signed the bill providing $20 million for research and $5 million to bolster support for home health care.

It was an emotional moment. “I’m so proud of the Legislative Assembly for coming together in near unanimous support for an issue bigger than us all,” said longtime Iron Range lawmaker David Tomassoni. The independent-turned-DFL discovered he had ALS last summer.

In his statement, Tomassoni, who now relies on assisted speech technology, also praised the bipartisan group of lawmakers who came together to pass the legislation. At a time of bitter division, it is an inspiring reminder that political collaboration is still possible and can bring innovative solutions to daunting challenges.

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

The bill deserves to be celebrated, but also to be thorough and lucid. What is innovative here is that a state government provides a significant sum for medical research. This is generally a role assumed by the federal government.

The National Institutes of Health (NIH) reports that they are investing nearly $42 billion a year in medical research, awarding “nearly 50,000 competitive grants to more than 300,000 researchers at more than 2,500 universities, medical schools and other research institutes in every state. Additionally, “about 10% of the NIH 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 work the same way. Beginning in 2023, scholars can apply for competitive grants from the state Office of Higher Education. Dollars are limited 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. These facilities are: Hennepin Healthcare, Mayo Clinic, M Health Fairview, and Minneapolis VA Health System.

There are few precedents for a state government directly funding medical research. A notable example is the California Institute of Regenerative Medicine (CIRM). In 2004, state voters passed a $3 billion campaign bill to accelerate stem cell research and accelerate next-generation treatments.

In 2020, California voters approved another ballot measure to continue funding CIRM, suggesting residents found it a worthy use of public resources.

NIH funding for ALS research this year is estimated at $115 million, with medical centers in Minnesota competing with other researchers nationwide for those dollars. So the state’s decision to add an additional $20 million for researchers here is significant.

“He will be able to catalyze much of the ongoing statewide research efforts with ALS,” said Dr. Nathan Staff of the Mayo Clinic. The money will help both scientific understanding and early treatment trials, he added, and advancing it could provide valuable information in the fight against other neurodegenerative diseases, such as Alzheimer’s disease or Parkinson’s disease.

New funding can also have an impact on economic development. Companies could start or set up here if this mobilization of the SLA 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 for waging other worthwhile medical battles.

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