Tag Archives: quality of life

The Pros and Cons of the new “Right to Try” Law

On May 30th 2018, the President signed the recently passed Right to Try (RTT) legislation into law. This new law allows patients to receive unapproved medications without FDA notification for up to one year. It also removes the FDA from prohibiting access to an experimental therapy and removes the FDA from advising on dosing, schedule, method of administration or other important safety measures. In short, you’re able to side step the FDA and go directly to the drug manufacturer. You’re basically on your own without the oversight of the FDA. So, Caveat Emptor (buyer beware) and proceed with caution.

Nevertheless, this opens up the door to new possibilities that were simply not available before.

Here’re some of the Pros and Cons as we see them.


  • Finally, some options. The RTT provides a level of freedom…and hope, that would otherwise be denied patients of terminal diseases.
  • Some of the therapies may prove beneficial and/or point the investigators and drug companies in a better direction.
  • It’s the right of every individual to choose their own destiny.
  • Side stepping Governmental bureaucracy and perhaps accelerating therapies that show promise.
  • Patients can try other drugs, supplements and therapies and report their results to their physicians and drug companies. Now information can flow in more directions.
  • The ALS Association both welcomed and voiced reservations about RTT. The association is aware of and is tracking this new law and will communicate with the ALS community.
  • Since the drugs are experimental and not FDA approved, this MIGHT lower treatment costs, as pharmaceutical companies cannot make a profit on these drugs until they’re FDA approved.
  • Possible access to other treatments and drugs, available outside the US, that have shown promise in other countries.


  • Some medications may not be safe, although they must have passed Phase 1 of clinical trials before patients of RTT can try the drugs.
  • Patients must look out for “bad actors” stepping in now to take advantage of patients vulnerabilities. Check history and reliability of manufacturer.
  • Pharmaceutical companies have very little incentive to provide access or broadly distribute their meds since they cannot make money until the drugs are FDA approved.
  • The RTT law could weaken current patient protection laws enforced by the FDA.
  • The reality is that many experimental drugs have limited access and availability anyway.
  • The RTT law may work as a pressure release valve and may reduce pressure on the FDA to speed up approval of Phase 1, 2 and 3 drugs in the pipeline.
  • Patient has little to no legal safeguards in case therapy produces more harm than good.

All in all, we think that the net effect of the new RTT law will be a positive one. This law opens up the conversation about the FDA’s unjustifiably slow and expensive process and provides the patient with some control over their destiny. That being said, patients need to be careful not to make a bad situation worse and should continue to consult with their physicians before venturing into unexplored territories.


Managing Quality of Life for ALS Patients

Winning the Fight is a mostly volunteer 501(c)3 non-profit organization that develops and studies nutritional therapies for ALS (Amyotrophic Lateral Sclerosis). They developed a metabolic program for ALS called the Deanna Protocol®  and scientific studies show that the program is indeed effective! Winning the Fight posted a very interesting article on their site and we wanted to share it with you.

Management Versus Cure
Scientists have been seeking a cure for ALS for over 130 years and none has been found. While scientists look for a cure for future ALS patients, thousands of patients currently suffering from ALS die as they wait for that cure to come. The life expectancy for those with ALS is so short that those living with the disease today most likely will not be alive to witness the discovery of a cure. Even if they would be alive when a cure is discovered, the chance of them remaining alive to see that cure gain FDA approval and become readily available to the public is slim.

As you can see, any cure that is found will benefit those diagnosed in the future, not those who have ALS now and are facing a life expectancy of two to five years. Who in the medical community is focusing them? Who is trying to keep them alive and well long enough for a cure to be found?

Winning the Fight, Inc. is the only organization that has bee focusing its research on prolonging the lives of those who have ALS now, improving their quality of life, and maintaining their physical function until a cure is found. This cause is just as worthy as the mission to find a cure, yet Winning the Fight’s research only received .009% of the total funding from last year’s Ice Bucket Challenge. (We received $10,000 and ALS Association received $110,000,000.) Those who are suffering and dying now deserve more than .009% of the nation’s financial commitment to ALS during this year’s ice bucket challenge. Wouldn’t you agree?

If you’d like to donate to organizations looking for a cure, great! You should. Please consider splitting your funds between Winning the Fight and those organizations. There are ALS patients who need you now. Please, give them more than .009%.

You Can Help Improve the Deanna Protocol® by Purchasing from Simplesa!

Simplesa will donate a portion of the proceeds of all sales of Deanna Protocol® products to Winning the Fight and Winning the Fight will use these donations to fund research to optimise the Deanna Protocol®.

About Winning the Fight, Inc. (WFND) 

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