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Right To Try Life Stories: Ted Harada

February 3, 2015

Those were the words told to Ted Harada when he was diagnosed with ALS, commonly known as Lou Gherig’s disease, in 2010. Weakness invaded his body as the disease started to take hold. At 38-years-old, Ted worried about leaving his three young children behind to face an uncertain future.

“When a doctor says ‘I’m so sorry, you have ALS and there is no cure,’ you are sentenced to die without hope,” Harada says. “Your world comes crashing down.”

A safety trial for a new ALS treatment option was being tested at Emory University to determine if the therapywas safe. It was a risky treatment, but Ted gave his immediate consent.

“I had three main reasons for doing it. First, I felt I owed it to my family to try something. Second, there was a very altruistic appeal to me knowing that by participating they could learn from me and help people down the road who were diagnosed with ALS. Third, I don’t play the lottery but as the saying goes, if you don’t play, you can’t win. My participation was my way of buying a lottery ticket with the prize being my life.”

Within weeks of the experimental treatment, something miraculous began to happen. Ted set aside his cane and started to regain his strength. While the ALS hadn’t completely left his body, the symptoms had begun to subside, allowing him to walk 2.5 miles for ALS awareness in a local campaign.

Ted’s miraculous return from the grip of this deadly disease demonstrates how the Right To Try can save patients who are battling a terminal illness.

Overseas, as concerns continue to rise over the viral spread of Ebola in Western Africa, the Right To Try movement has been thrust into the global media spotlight, as ethical questions were raised concerning the use of experimental drugs on Ebola patients.

The experimental Ebola treatments showed promising results. Two of those infected were American aid workers who received the experimental drug ZMapp, which is manufactured in the U.S. Both aid workers were returned to the states, where they recovered fully at Emory hospital in Atlanta.

A World Health Organization ethics panel offered a nod to the use of experimental medications, saying there was a moral obligation to provide these drugs as a potential treatment or prevention in the case of a deadly viral outbreak.

Despite the FDA claims of special circumstances, those suffering from any life threatening disease, whether it’s Ebola, ALS, or cancer, should all have the right to try to save their own lives with experimental treatment options.

Lawmakers across party lines agree. Colorado, considered a Democratic state, Louisiana, a Republican state, and Missouri, aswing state, all passed the Right To Try unanimously this year. In October Michigan became the fourth state to pass the Right To Try into law and Arizona quickly followed suit becoming the fifth state to enact the law when voters overwhelmingly approved the popular measure on the November 4 ballot.

Like many others touched by a terminal illness, the issue took a personal turn with Michigan bill sponsor Terry Kalley. His wife, Arlene has dealt with her terminal cancer for many years, trying multiple drugs as they became available. Sadly, as the number of FDA-approved drugs continues to shrink, the threat of Arlene’s cancer continues to grow.

“Of course there are risks, but by far the greatest risk to my wife and other terminally ill patients is not to have access to these drugs,” Terry Kalley told lawmakers in his efforts. “Without access, her risk of death increases to 100 percent.”

“I respect that the FDA represents the gold standard of drug safety, but certainly those with no other options are willing to take an elevated risk. Perhaps those patients are willing to settle for the silver or bronze standard,” said Ted Harada.

The Right To Try gives those who’ve lost hope, one last chance to win it back. The Goldwater Institute is working with lawmakers in multiple states to pass Right to Try laws across the country in 2015.

 

 

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