Another Try at ACA Repeal Coming
With a deadline of September 30, some Senate Republicans are trying to revive a repeal of the Affordable Care Act using reconciliation rules. According to Reuters, Senator Bill Cassidy, R-Louisiana, and Senator Lindsey Graham, R-South Carolina, will introduce a bill to replace the Affordable Care Act on Monday. The bill apparently has the backing of President Donald Trump and will give more healthcare powers to states. Senator John McCain, R-Arizona, who voted against the last Senate bill, indicated that he was open to this new one, although he hasn’t seen details about the bill yet. The bill would still need to be reconciled with legislation the House already passed.
Senate Expands NIH Funding
The president may have proposed a 22% funding cut for the National Institutes of Health (NIH), but a Senate subcommittee approved an increase in funding. The spending panel approved a $2 billion raise, bringing funding to $36.1 billion for fiscal year 2018, according to Science magazine. A House panel only approved a $1.1 billion increase. The Senate’s draft bill includes new spending on Alzheimer’s disease research and additional funding for a brain-mapping initiative and a precision medicine study. Both the Senate and the House bills block the White House’s proposal to cut NIH payments that cover the overhead costs of research at universities.
Overseas Clinical Trials Raise Concerns
A recent herpes vaccine trial that flew American patients to St. Kitts for experimental injections has garnered negative attention because it hadn’t received permission from a safety panel or the FDA. These types of trials are not unusual, reported STAT, which found that 90% of new drugs approved in 2017 were tested in part outside of the United States and Canada. However, trials overseas run risks: cultural differences and lapses in ethical and scientific standards can cast doubt on the data used to support decision making.
STEER Data Open Door to SMA Gene Therapy for Wider Age Range of Children
March 19th 2025Delivery of onasemnogene abeparvovec into the intrathecal space was safe and effective for children with spinal muscular atrophy (SMA) aged 2 to 17 years, who had previously been shut out of receiving gene therapy.
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Neurologists Share Tips for Securing Patient Access to Gene Therapies
March 19th 2025Tenacious efforts at every level, from the individual clinician to the hospital to the state to Congress, will be needed to make sure patients can access life-saving gene therapies for neuromuscular diseases.
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