Tucson man battling rare cancer applauds President Trump for 'Right to Try Act'

PIMA COUNTY, AZ (Tucson News Now) - A typical Sunday in the Downs' household is spent enjoying each other's company. On this Sunday, there happens to be Boston Red Sox baseball on the television - Shaun Downs' favorite team.

Shaun, his wife Raquel, and their 4-year-old daughter Rozalynn, are spending the day under one roof.

"We try to keep it normal," Raquel said. "There are days that Shaun doesn't feel well. I have to take Rozalynn to school. Sometimes he's in pain or his energy levels are low. Those are the days that we do our best."

Those are days usually spent fighting a terminal illness.

After blood tests at the VA Hospital that revealed little information about an illness, Shaun Downs got a second opinion by his primary physician and was diagnosed with a rare form of pancreatic cancer in July 2017. He was given about 12-14 months to live.

Downs jumped into chemotherapy as quickly as possible to treat his Pancreatic Neuroendocrine Tumor, at the Mayo Clinic in Phoenix, where he pushed for more than doctors were willing to give.

"I want to come up for more. I will be there tomorrow. I want more. I have a life to live and I'm fighting," he said about his urgency. "I'd get emails back saying, 'If we did do that it would kill you - kill you faster.'"

His wife of 11 years has been there to see the suffering. Raquel has been watching her once-healthy husband, a 37-year-old Navy Veteran who served from 2003-2010, lose weight and lose energy.

It's been the hardest part of watching Shaun's treatment.

"For any loved one you don't want to see them get hurt or go through pain," she said. "For him, he definitely takes it in stride."

"I can't imagine being in her shoes," Shaun said.

They've been making treatment decisions together and taking chances. Since January, Shaun Downs has been participating in an experimental Immunotherapy treatment, with the drug Keytruda, since January 2018, being guided by his doctor.

"The FDA previously approved Keytruda for the treatment of certain patients with metastatic melanoma, metastatic non-small cell lung cancer, recurrent or metastatic head and neck cancer, refractory classical Hodgkin lymphoma, and urothelial carcinoma," the FDA announced. It is not approved for his rare form of pancreatic cancer.

"Am I apprehensive of him getting worse or hurt? Absolutely. But no, I am a voice of reason when it comes to let's research, let's see what's going on first, and let's ask questions. Let's talk to the doctor and let's see if this would be a better choice for you, or what other avenues do we have," Raquel Downs explained.

GoFundMe: Shaun's Cancer Smashing Fund.

But new legislation is a breath of fresh air for the Downs family.

President Donald Trump signed a new law Wednesday, May 30, aimed at helping people with deadly diseases try experimental treatments, calling it a "fundamental freedom" that will offer hope and save lives, according to an Associated Press report.

Trump had supported efforts to gain access to the treatments during his 2016 campaign. In his State of the Union address, the president said people who are terminally shouldn't have to travel "from country to country to seek a cure."

The measure would give people diagnosed with life-threatening conditions who have exhausted treatment options the ability to gain access to unproven drugs without first getting permission from the FDA. New drugs normally undergo years of expensive testing before manufacturers seek and gain FDA approval to market them.

Right-To-Try legislation already existed in 40 states, including Arizona.

The federal law would give patients nationwide a new avenue.

"I was very happy," Raquel said of the President's decision.

"For my case, there's no more red tape with my situation where I have people that are controlling my destiny now besides my doctor," Shaun said. "It's not just for me. Look at the children, the kids that are at the end and their parents can't afford it. Now there's legislation that just doesn't help me, the 37-year-old man, try to live my life to the fullest and live a daily life. Look at the kids that can have hope. Their parents give them hope."

Opponents of the bill argue it would offer false hope and ineffective drugs to patients desperate for treatment, the Associated Press report explains. Opponents also stated the bill created the incorrect impression that the FDA serves as a bottleneck that deprives dying patients of unproven options.

"It unleashes and opens another door of possibilities instead of having restrictions," Raquel said. "They're not the ones going through this. They're telling us no but he's the one sick. He's the one suffering here at home. I get to see him sick. I'm the one that has to take care of him, but they don't understand that."

The family has set up a GoFundMe page to help with additional expenses to their treatment that the VA will not cover.

For the Downs family, the experimental treatment is all worth it to get the extra, normal days together.

"If it gives me another six years. If it gives me a chance to grow old with my wife. Surgery for me is off the table because it spread to my liver. But if it stabilizes it, that's a bonus," Shaun said.