An amazing medical breakthrough—and a warning

Over the weekend, The New York Times told the incredible story of a teenager who received gene therapy for sickle cell disease—but as drug prices remain the target in health policy proposals from both political parties, investment in similar groundbreaking cures could be at risk. 

At 16, she's the youngest gene therapy patient EVER. Due to the groundbreaking treatment, which took two decades to develop, Helen Obando has a chance at surviving and thriving despite being born with the inherited blood disease, The New York Times explains.

After treatment, she had no signs of sickle cell disease—meaning “sickle cell disease could be the first common genetic disorder to be cured by manipulating human DNA.”

This kind of treatment is the future of medical care—but the return on investment in the expensive, time-consuming R&D is declining, a study from Deloitte explains, making it difficult for biopharmas to continue to invest in treatments for diseases like sickle cell disease, cancer, and Alzheimer’s. 

And it's compounded by the fact policymakers continue to push for drug price controls—from House Speaker Nancy Pelosi calling on the Senate to pass the House Democrats' international price index, to the Trump administration gearing up to allow states to import cheaper drugs from Canada, and even some states proposing plans to manufacture their own drugs.

Because if these price controls pass, the next groundbreaking treatment could be at risk. Even the Congressional Budget Office (CBO) agrees policies like an international price index could make us miss out on potentially dozens of new cures in two decades—meaning kids like Helen Obando won’t get the treatment they so desperately need. 

For more on this issue and why it’s one of our priorities this year, visit www.bio.org/save-cures.

More Health Care News: 

The New York Times: Trump took credit for lower cancer death rates. Advocates say not so fast.
The American Cancer Society said while Trump has indeed increased funding for cancer research, “the impact of those increases are not reflected in the data.” Treatment advances, as well as other factors like early detection and reduced smoking rates, are the real reasons for the drop.

The Hill (opinion): Should access to life-saving medicines be determined by economic evaluations?
We must preserve access to breakthrough medications, the innovative track that delivers these medications, and, ultimately, make sure that out of pocket costs are low for patients and families.

Washington State has tried and failed to implement a low-carbon fuel standard to tackle high transportation emissions—but as climate change heats up, a broad coalition is pushing for one this year to clean up the air as well as support the local biofuels industry, reports the Seattle Times. 

The details: Speaking at Seattle-Tacoma International Airport in advance of Washington State's legislative session starting today, Gov. Jay Inslee (D) called for passage of a clean fuel standard, which passed the state house last year but is stalled in the state senate, explains the newspaper.

But the proposal exempts some of the biggest users of fossil fuels, including aviation, military vehicles, railroads, and boats—though they choose to opt in and get credits for using, for example, sustainable aviation fuel, or SAF, made from biofuels.

Why it matters: Transportation emissions represent 45% of emissions statewide, with aviation and jet fuel accounting for 9.5% of emissions.

Alaska Airlines knows what’s up. The airline joins a broad coalition in support of the proposal and wants to opt-in to using more biofuels—but says there isn’t local biofuels supply to meet the demand. 

This is why a low-carbon fuel standard is important. Clean fuel programs are a proven driver in decarbonizing transportation. A similar standard in California, for example, prevented more than 50 million tons of carbon pollution from being emitted and increased the clean fuels market by $2.8 billion, benefitting largely rural communities where feedstocks are grown and biofuels are produced, as we’ve explained.

Working with the Sustainable Aviation Fuels (SAF) Producers Group and the Low Carbon Fuels Coalition (LCFC), this year, we’re championing the use and growth of the American biofuels industry and biotech’s solutions for tackling climate change.

More Agriculture & Environment News: 

Axios: Amid chaos, new decade brings big global warming changes
“President Trump pushes the biggest changes to environmental law in 50 years, the world’s biggest investor is going big on global warming and House Democrats are going it alone on climate policy. And this all just happened last week!” 

South China Morning Post: China says ‘trade war is not over yet’ ahead of phase one deal signing that is just the ‘first round of a game’
Taoran Notes, a social media account affiliated with the Chinese government’s Economic Daily, said, “We must bear in mind that the trade war is not over yet – the US hasn’t revoked all its tariffs on China and China is still implementing its retaliatory measures. There are still many uncertainties down the road.”