Right to Try

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MJALSWarrior

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Has anyone seen anything to indicate whether the VA is going to recognize the Right to Try and allow us to try Nurown or other promising drugs under development?
 

Atsugi

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Trump signed the Right to Try Act today, adding federal patients to the 38 states already having these RTT / Compassionate Care laws.

It takes months for a law to be translated into the code of federal regulations, so VA might delay IF you're in one of he 12 states that weren't already on board.

In either case, the big hurdle will be your doctor and his boss. They can disagree with your request. So can the drug company.

For 10 years, the FDA has approved 99 percent of requests for special treatment for terminally ill patients, within days if needed. FDA doctors could also give advice to your doc about the drug. However, this federal RTT law that Trump signed eliminates FDA from the approval process.

Once again, it's up to your doc.Good luck.
 

lgelb

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Well, it's not really up to your doc, in or out of the VA, whether you get NurOwn under RTT law. It's up to the manufacturer, and I wouldn't hang your hat on it. They have to spend their time/money on the trial they're running now, toward approval so everyone can have reimbursed access if it is safe and effective.

If you are eligible for the trial, which is still recruiting, it's certainly something to look into.
 

Vincent

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Right to try sounds like a good idea on the surface. But you can't just walk into your local Walgreens and raid the pharmacy. You have to convince a dr and the board he works under agrees. Then the lawyers get involved and it gets more complicated. I want you to think back to the days where diaphragm pacing was going to replace the tracheostomy. People with a pacing system actually died faster than without. There are things that can make your shortened life shorter. The reason for the long drawn out approval process is so they are sure it isn't at best useless or at worst something that could make having ALS worse than it already is.
Vincent
 
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