Good Day BIO: Athletes fight rare disease – plus, a new high-protein soybean advances

Football season starts today—and college athletes are kicking off a contest to support rare disease R&D. BIO member Benson Hill recently announced a new partnership to advance high-protein soybeans—with AI, data science, genomics, and biology. Plus, news from D.C. on a key USTR nominee and EUA for monkeypox tests. (729 words, 3 minutes, 38 seconds)

Athletes kick off contest to fight rare disease

As the NFL kicks off today—with the champion Los Angeles Rams battling Buffalo—college athletes are helping battle rare diseases through the Young Investigator Draft.

What are rare diseases? They’re defined as diseases affecting fewer than 200,000 people in the U.S., but their overall impact is large, as 1 in ten Americans will be diagnosed with a rare disease, says the National Organization for Rare Disorders (NORD).

Half of rare diseases affect children—and 30% of children with rare diseases will not reach their fifth birthday, according to Uplifting Athletes, a nonprofit founded and led by university athletes to fight rare disease.

Encouraging research: Uplifting Athletes holds the annual Young Investigator Draft, recognizing top young rare disease researchers. Patient advocacy organizations can nominate researchers serving the rare disease community here by Oct. 14. Winners receive $20,000 grants, co-funded by Uplifting Athletes and the nominating patient advocacy organization.

Why it matters: Rare disease research is challenging, because it’s difficult for drug makers to invest in years of development for a treatment that only a few thousand people will use.

Biotech’s on it—and many BIO members are sponsoring the draft, which gives special recognition to researchers from underrepresented backgrounds. Meanwhile, efforts like the Institute for Life Changing Medicines, a non-profit with a for-profit model, are seeking to help. And the success of Global Blood Therapeutics, as just one example, shows the possibilities.

Why policy matters: Discussion of the extension of the Prescription Drug User Fee Act (PDUFA), which expires at the end of September, includes ill-considered proposals to narrow FDA’s Accelerated Approval pathway, which studies show benefits drug development for rare disease. We need more good policy, like the 40-year-old Orphan Drug Act, a game changer for rare diseases.

More Health Care News: 

Lancet: Malaria vaccine trials show promising results
“A booster dose of R21/Matrix-M at 1 year following the primary three-dose regimen maintained high efficacy against first and multiple episodes of clinical malaria. Furthermore, the booster vaccine induced antibody concentrations that correlated with vaccine efficacy. The trial is ongoing to assess long-term follow-up of these participants and the value of further booster vaccinations.”

High-protein plant source moves toward the market

The quest for alternative proteins produced with less carbon and water moved forward with a partnership to use high-protein soybeans developed through genomics innovation in commercially produced food products.

The deal: BIO Member Benson Hill, a pioneer in CRISPR gene-editing technology, announced a partnership with global nutrition specialist ADM, who will make Benson Hill’s Ultra-High Protein (UHP) soybeans into food products produced at scale and sold commercially.

What makes them different? The protein content of UHP soybeans can replace the typical concentrate made by crushing soybeans, thereby eliminating water and energy use during processing, according to Benson Hill.

How it works: The UHP soybeans are produced with Benson Hill’s CropOS® platform, which “combines data science and machine learning with biology and genetics” to identify the most promising plant genetics in a matter of weeks, instead of several growing seasons. However, the products are developed through traditional breeding and not considered a GMO, per Benson Hill.

Increasing demand: Consumers are growing more accepting of plant based foods (including meat), with retail sales of plant-based products in the U.S. soaring 27% and surpassing $7 billion in 2020, according to the Plant Based Foods Association.

What they’re saying: “We are excited to partner with ADM to help address demand in high-value and high-growth protein ingredient markets, while broadly delivering innovation and impact across the agri-food value chain to benefit farmers, food companies and consumers,” said Benson Hill CEO Matt Crisp.

More Agriculture and Environment News: 

Reuters: Enviva, Alder strike deal on biomass for sustainable aviation fuel
“Enviva, a U.S. producer of woody biomass, will supply up to 750,000 tonnes per year of what it said is sustainably sourced forest byproducts like treetops and tree limbs to Alder, which is building a facility in the U.S. Southeast to make an energy-dense liquid that can be refined into sustainable aviation fuel (SAF). They expect the agreement to begin in 2024.”

President Biden’s Thursday: Delivering remarks on the arrival of updated COVID-19 vaccines. Meanwhile, HHS will allow emergency use authorization of monkeypox tests.

What’s Happening on Capitol Hill: ICYMI, the Senate Finance Committee unanimously approved Doug McKalip’s nomination for chief agricultural negotiator at USTR (H/T Agri-Pulse), setting him up for a full Senate vote. Meanwhile, as the Congressional Budget Office notes, PDUFA expires this month.