The controversy surrounding Nurown – – A roundtable discussion
Nurown, the promising stem cell treatment for ALS, is currently in a Phase 3 clinical trial, with results expected to be announced December, 2020. But, controversy between the company and ALS patients is dominating social media. For example: some patients are demanding early access, others are petitioning lawmakers and final results of this expensive treatment have yet to be confirmed on a large cohort.
Here are a few of the key points, with discussion questions for our forum members:
- The company’s Phase 1 and 2 trials had positive results with 2-3 participants sharing on social media how they experienced a reduction in symptoms. (Here is a news report on Mark Bedwell’s remarkable results) Question: Why don’t other trial participants come forward to share their experiences?
- This led to other ALS patients demanding early access to the treatment under the new Right to Try law. But the company is resisting this early access, stating they want to wait until Phase 3 is finished, in order to preserve the integrity of their testing. (Here is a link to the company’s position) Question: Do you think they are correct in waiting? Should lawmakers force companies to provide ALS patients access to treatments not yet approved by the FDA?
- Currently, the Nurown stem cell treatment is estimated to cost $300,000/patient. But it has not yet been established if the effects will eventually wear off, requiring repeat treatments. In addition, the company claims that stem cell treatment is neuroprotective; for existing motor neurons, but it has not yet been proven that it will also create new motor neurons to replace those that have already died off. Question: Should this hefty cost be covered by health insurers? Especially since Nurown only slows down symptoms, and is not a cure for ALS?
What are your thoughts about Nurown as a treatment for ALS? Has this conversation topic sparked additional questions for you? Would you try Nurown; and what about its cost?
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