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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Tim Tebow Finds a Higher Calling in Pro-Life Causes Rather than Sports Trophies
NRL News Today reported on Kansans for Life annual Valentine’s Day banquet held earlier this month.
Nearly 1,200 people were in attendance at this event.
The theme of this event was LIV-ing in victory, which referred to Super Bowl LIV.
Lamar Hunt, Jr., one of the owners of the Super Bowl Champs, the Kansas City Chiefs, was the Master of Ceremonies for the event. In his opening remarks, he said:
I do not think it is a cliché to say we are in a life and death battle for the truth and authentic dignity of the human person. We need your full attention. You need to drop what you’re doing and join us, and this can be in so many ways: prayer, assistance to those in need, emails, phone calls, in-person meetings. Get educated about what we’re fighting about here. Really listen in and tune in.
Then Hunt said, “Please do something about it. Pray. Take action. If you don’t know what to do, ask somebody. Place this as a major priority in your life.”
Hunt concluded by saying that he often heard the phrase “Live in victory” from another resident at the retirement home where he visits his mother.
The main highlight of that evening was the keynote speech by Tim Tebow, former quarterback for the Denver Broncos.
“It is such an honor to be here,” Tebow said as he thanked the other speakers coming before him for their work to protect the unborn.
Tebow praised Hunt for “having courage in the face of a lot of other people who don’t have it and for your willingness to be up here and support this organization.”
“It really does mean a lot more than winning the Super Bowl,” Tebow remarked. He continued, “One day, when you look back and people are talking about you and they say Oh my gosh what are you going to be known for? Are you going to say Super Bowl, or we saved a lot of babies?”
Tebow asserted that Kansans for Life is not a philanthropy.
It’s a rescue mission. You know why we call it a rescue mission? Because when we say that, it puts a timeline on it.
When’s the last time you heard a rescue mission taking place in a month or a few years. No, a rescue mission means now. It gives you a sense of urgency. It says we have to go not because it’s our time, but because it’s their time. … I have to live a sense of urgency because while I might have time, they don’t.
Later, Tebow turned toward Hunt and Chiefs punter, Dustin Colquitt, who was also attending the event, he told them it was “awesome they won the Super Bowl.”
“It’s amazing. What an accomplishment! But you know the best part of that accomplishment is that it gets you an even bigger platform.” That platform, Tebow declared, can be used to support the pro-life movement.
“You see, my mom 32 years ago had doctors tell her she needed to abort me because if she didn’t, it was going to cost her life. And they didn’t even believe that I was a baby. They thought I was a tumor,” Tebow said.
Tebow jokingly recounted that as the baby of a family of 5 siblings, he was called “Timmy the tumor” by his siblings.
On a more serious note, Tebow said, “to make a long story short, when I was born, they found out the placenta wasn’t actually attached. So, the doctor looked at my mom after 37 years of being a doctor and said, ‘This is the biggest miracle I’ve ever seen because I’m not sure how he’s alive.’ … I’m so grateful that my mom trusted God with my life and her life.”
In 1986, Tebow’s father, Robert, begged the Lord to give him one more child. His father said, “I prayed for a preacher and got a quarterback.”
Tebow finished the event by stating that, “What you’re doing here matters. You’re fighting for life. You’re fighting for people that can’t fight for themselves. And my question to you is: Are you willing to stand up in the face of persecution, in the face of adversity, in the face of criticism, when other people are going to say it’s not worth it, when other people won’t stand beside you? Maybe not everybody is going to be with you. Will you stand up for what’s right?”
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