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MIT Tech ReviewPublished: 7/31/2026Reading Time: 8 min

Right to Try Revolution - Can Gene Editing Save Kids?

TL;DR

A desperate father's quest to save his son's life through gene editing raises questions about the rights of patients, the role of big pharma, and the risks associated with unproven technologies. The growing demand for gene editing therapies has created a new market, but also raised concerns about healthcare inequality and the role of insurance companies. The future of gene editing therapies depends on striking a balance between enabling access to life-saving treatments and safeguarding the health and safety of vulnerable patients.

Key Highlights

  • Gene editing technologies like CRISPR have revolutionized the field of medicine
  • The 'right to try' law has sparked a heated debate about access to experimental treatments
  • Big pharma plays a crucial role in providing access to gene editing therapies
  <h2>The Backstory</h2>
  <p>Kris DeVault's world was turned upside down when his 2.5-year-old son Brody was diagnosed with a rare genetic disorder. The father of two was desperate to find a cure for his son's developmental delays, speech problems, and coordination issues. After exhausting conventional treatments, DeVault turned to the latest innovation in medicine: gene editing. His quest to access experimental gene editing therapies for Brody has sparked a heated debate about the 'right to try' laws, a term previously associated with terminal patients seeking experimental treatments for end-stage cancer or other diseases.</p>
  
  <h2>What Exactly Happened</h2>
  <p>In March 2023, Montana became the 40th state to pass a 'right to try' law, allowing patients to access experimental treatments for life-threatening illnesses. Kris DeVault is one of the families benefiting from this law, using it to petition for access to gene editing therapies for his son Brody. The experimental treatment has shown promising results in addressing genetic disorders, but the process of accessing it is shrouded in secrecy, and the long-term effects are unknown. The DeVault family's story highlights the complexities and challenges faced by families seeking access to cutting-edge medical treatments.</p>
  
  <h2>The Technical Reality</h2>
  <p>Gene editing technologies like CRISPR have revolutionized the field of medicine, enabling precise modifications to the human genome. However, the use of gene editing in treating genetic disorders is still in its infancy, and the scientific community is divided on its effectiveness and safety. The DeVault family's case raises questions about the regulation of gene editing therapies, the role of big pharma in providing access to these treatments, and the risks associated with using unproven technologies on vulnerable patients.</p>
  
  <h2>Market Impact: Who Wins & Loses</h2>
  <p>The growing demand for gene editing therapies has created a new market for biotech companies, with investors pouring millions into gene editing startups. Companies like <a href='https://toolgram.cloud/issues/slug-here'>Editas Medicine</a> and <a href='https://toolgram.cloud/issues/slug-here'>CRISPR Therapeutics</a> are racing to develop safe and effective gene editing treatments for genetic disorders. However, the high costs associated with these treatments have made them inaccessible to many patients, leading to a growing concern about healthcare inequality. Meanwhile, the DeVault family's story has sparked a heated debate about the role of insurance companies in covering gene editing therapies, with some arguing that they should be covered as a matter of course.</p>
  
  <h2>The Verdict</h2>
  <p>Kris DeVault's crusade to save his son's life through gene editing raises crucial questions about the rights of patients and the role of big pharma in medical breakthroughs. As the 'right to try' law gains traction, it's essential to strike a balance between enabling access to life-saving treatments and safeguarding the health and safety of vulnerable patients. The future of gene editing therapies depends on our ability to navigate these complex issues and ensure that these groundbreaking technologies are available to those who need them most.</p>

What Happened?

In March 2023, Montana became the 40th state to pass a 'right to try' law, allowing patients to access experimental treatments for life-threatening illnesses. Kris DeVault is one of the families benefiting from this law, using it to petition for access to gene editing therapies for his son Brody. The experimental treatment has shown promising results in addressing genetic disorders, but the process of accessing it is shrouded in secrecy, and the long-term effects are unknown. The DeVault family's story highlights the complexities and challenges faced by families seeking access to cutting-edge medical treatments.

Background

Kris DeVault's world was turned upside down when his 2.5-year-old son Brody was diagnosed with a rare genetic disorder. The father of two was desperate to find a cure for his son's developmental delays, speech problems, and coordination issues. After exhausting conventional treatments, DeVault turned to the latest innovation in medicine: gene editing. His quest to access experimental gene editing therapies for Brody has sparked a heated debate about the 'right to try' laws, a term previously associated with terminal patients seeking experimental treatments for end-stage cancer or other diseases.

Why It Matters

Impact on Developers

The growing demand for gene editing therapies has created a new market for biotech companies, with investors pouring millions into gene editing startups. Developers must navigate the complex regulatory landscape to ensure that their therapies are safe and effective.

Impact on Business

Companies are racing to develop safe and effective gene editing treatments, but the high costs associated with these treatments have made them inaccessible to many patients. Businesses must balance the need to make a profit with the need to provide access to life-saving treatments.

Impact on Consumers

The 'right to try' law has given patients and families a new sense of hope, but it also raises questions about the risks associated with unproven technologies. Consumers must be informed about the potential benefits and risks of gene editing therapies and make informed decisions about their healthcare.

Technical Details

Expert Analysis

As the market for gene editing therapies continues to grow, it's likely that we'll see a surge in innovation and investment in this space. However, it's essential to prioritize the safety and efficacy of these therapies, as well as the rights of patients and their families. The future of gene editing therapies depends on our ability to balance accessibility, affordability, and innovation.

Frequently Asked Questions

What is the 'right to try' law, and how does it affect patients?

The 'right to try' law allows patients to access experimental treatments for life-threatening illnesses, giving them a new sense of hope and possibility. However, it also raises questions about the safety and efficacy of these treatments, as well as the role of big pharma in providing access to these therapies.

What are the risks associated with gene editing therapies?

The risks associated with gene editing therapies are still largely unknown, and the long-term effects of these treatments are still being studied. However, it's essential to prioritize the safety and efficacy of these therapies, as well as the rights of patients and their families.

How do insurance companies factor into the equation?

Insurance companies play a crucial role in covering the costs associated with gene editing therapies, but the high costs associated with these treatments have made them inaccessible to many patients. Businesses must balance the need to make a profit with the need to provide access to life-saving treatments.

What's the future of gene editing therapies?

As the market for gene editing therapies continues to grow, it's likely that we'll see a surge in innovation and investment in this space. However, it's essential to prioritize the safety and efficacy of these therapies, as well as the rights of patients and their families.

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