In the wake of debilitating genetic diseases that have plagued mankind for centuries, many are turning to a controversial form of treatment dubbed “gene therapy,” which seeks to cure ailments at the genetic level. However, Big Pharma’s aggressive attempts to charge outlandish sums for this untested treatment could leave consumers bereft of their health and wallets.
According to the U.S. National Library of Medicine, gene therapy works by replacing problematic, mutated genes with healthy gene copies, inactivating mutated genes that function improperly, and introducing new genes to assist in fighting disease. Currently, gene therapy is only being tested for diseases with no known cures.
Spinal muscular atrophy (SMA) is a prime example of a disease being targeted by biotech companies for gene therapy, but the whopping price tag may be a hindrance to many with the disorder.
Zolgensma, an SMA gene therapy being developed by Novartis AG, would reportedly be “cost effective” at over $5 million, according to the Institute for Clinical and Economic Review (ICER). Novartis echoed the institute, calling the gene therapy cost effective at $4-5 million for a one-time treatment.
Similarly, Spinraza, an SMA treatment from Biogen Inc., would charge patients $750,000 for the first year and $375,000 per year thereafter. “The promise of gene therapy in general is that it would be once and done … but that is uncertain at this point,”Alfred Sandrock, Biogen Chief Medical Officer, reportedly told Reuters.
“Spinraza is still a very viable option for babies with SMA. For children, teenagers and adults it may be the only option open to them,” Sandrock concluded, underscoring the fact that, for many suffering from genetic diseases like SMA, these costly cures could be the only option available.
Furthermore, the financial burdens presented by gene therapies could be the least of potential patients’ worries.
In September 1999, 18-year old Jesse Gelsinger died during a gene therapy trial study at the University of Pennsylvania in Philadelphia. Gelsinger suffered from a genetic defect that prevents proper metabolism of ammonia and received doses of a virus carrying a “corrective gene” during the trial study.
Fast forward to 2018—James Wilson, the founder and director of Penn’s Institute for Human Gene Therapy and researcher involved in the 1999 trial study, sounded a dire warning about the dangers of gene therapy.
Noting that monkeys and pigs given high doses of gene therapy died or suffered behavioral changes during experiments, Wilson stated, “What is remarkable is we have not seen it before,” adding, “We were surprised but shouldn’t have been. If you push the dose of anything high enough, you are going to see toxicity.”
“It would be very naïve for our community to assume we won’t have toxic effects,” Wilson continued. “People get comfortable, saying, ‘Hey, let’s do it—there is nothing lose.’ Well, it’s out there waiting. But when it’s going to happen, why it’s going to happen—nobody knows.“
Moreover, some are experimenting with gene therapy on an individual basis.
Likewise, in October 2017, Josiah Zayner, CEO of biohacking startup “The Odin,” injected himself utilizing the gene-editing technology, CRISPR, in an effort to enhance his muscles. Last year however, after watching a biotechnology CEO inject himself with an untested herpes treatment, Zayner softened his approach towards experimenting with the untested treatments.
“Honestly, I kind of blame myself,” Zayner told The Atlantic, adding, “There’s no doubt in my mind that somebody is going to end up hurt eventually.”
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