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Joshua Thompson’s Bumpy Wave

July 25, 2016

Joshua and Joy Thompson’s lives were filled with hope and opportunity. With a baby on the way, and many new memories ahead, they, like most young parents, could have not have been more excited to begin the next chapter of their life.

Josh was an avid, talented surfer who loved to experience the soothing sound of the ocean, and the adrenaline of catching a wave. The beach was major part of his family’s life and the thought of his son playing on the beach with him was a dream come true.

That dream changed, when at the young age of 34, he was diagnosed with ALS. The disease progressed rapidly. In only a few months, Josh started to lose the ability to do typical daily functions such as walk, talk, and eat. Never one to give up, Josh began researching various treatment options. A drug named Iplex had shown promising results, and Josh’s mom vowed to get him the drug. Little did she know the legal hurdles she would face.

The drug’s maker, Insmed, lost a settlement case and could not sell Iplex anymore because it was too similar to another drug that was already on the market. Eventually, Iplex was made available for patients if they were approved by regulatory agencies. Consequently, his mother sent a letter to the FDA asking for permission to get the drug. Her petition was denied.

Josh’s chance for survival was looking slim.

Finally, the FDA agreed to run a clinical trial for 13 patients, including Josh. This proved to be a life-saving opportunity for the Thompson family. Many families like the Thompson’s do not get the opportunity to enroll into clinical trials. In the current FDA system only 3{010c6536f15f83a69f09c4467fdfb4a5656804feab27fe0dec71ed1e80da306f} of terminal patients are accepted each year – and sadly many die waiting to get access to a promising investigational treatment.

Currently, Iplex seems to be helping Josh function better on a day to day basis. He and Joy welcomed a second son into their family. Josh’s future is looking brighter each day.

In Josh’s honor, an ALS walk was created to help raise awareness for the deadly disease. The event itself has raised millions of dollars for research and patient services with over 30,000 people participating in the walk each year. However, there is much work left to be done.

Josh Thompson was able to get Iplex, and it saved his life. Many are not so fortunate. Each year, people dying from terminal illness have to beg the FDA to have the right to try investigational medicines that may prove life-saving. Many, like Josh initially, are denied. Their future and their family’s future should not be decided by a government agency.

Terminally ill patients have the right to try to save their own lives. To date, 17 states, including Josh’s home state of Virginia, have signed Right to Try laws that allow terminally ill patients access to experimental medications. If you want to bring Right to Try to your state click here to learn more.



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