Brian Mast

Russell Reed was diagnosed with stage 4 pancreatic cancer, and a new drug is his only hope.

The FDA cleared the experimental drug for early access, but delays persist.

The manufacturer, Revolution Medicines, says the issues lie with its distributor Bionical Emas.

Reed and his wife were advocates for pancreatic cancer research long before his diagnosis.

A Port St. Lucie man with pancreatic cancer is battling a drug manufacturer and its distributor to receive treatment, despite support from his oncologist, a Florida congressman and the U.S. Food & Drug Administration.

Russell Reed, 64, had exhausted every option for his stage 4 cancer before learning he qualified for a new drug currently in Phase 3 clinical trials. Daraxonrasib was shown to have “landscape-changing” results in extending life expectancy, according to the American Society of Clinical Oncology.

The FDA on May 1 announced it was "safe to proceed" with an Expanded Access Program that allows patients like Reed to take experimental treatments outside of clinical trials.

However, the drug’s manufacturer, California-based Revolution Medicines, has not released the medicine. Reed, his oncologist and similar patients across the country have been left in the dark.

“That announcement was weeks ago, and every day counts,” Reed said. “The drug needs to get into people's hands to work.”

Florida man fights pancreatic cancer as Daraxonrasib withheld

In August 2024, Reed was driving on Southeast Bridge Road in Hobe Sound on his way to a job interview when he got the call: His doctors found a mass on the head of his pancreas. It was cancer.

"I gave myself a 30-second pity party; then I was like, ‘The fight is on,’ ” Reed said. “I even went to that job interview.”

His wife, Marnie, 58, was less matter-of-fact.

"I think I woke up a whole three-mile-radius crying,” she said.

Pancreatic cancer is one of the deadliest as it is usually caught late. The average five-year survival rate is less than 15%.

The Reeds knew the disease well. Marnie’s father died of pancreatic cancer in 2008 when he was the same age as Reed, and the couple since has devoted their free time toward advocacy. One thing they did was organize fundraisers, including one that raised $40,000 in donations for pancreatic cancer research.

“I knew it was going to be a hell of a fight because of what we went through with Marnie’s father,” Reed said.

Cancer treatment, clinical trials, radiation, chemotherapy

Upon Reed’s diagnosis, they contacted these organizations:

Lynn Cancer Institute: Couldn't see him for 2½ weeks and did not accept their insurance.

Moffitt Cancer Center Tampa: No openings and required self-pay for a consultation.

Cleveland Clinic Weston Hospital Maroone Cancer Center: Could not get anyone on the phone.

Sylvester Comprehensive Cancer Center, Miami: Did not accept their insurance.

They were referred to Memorial Cancer Institute in Hollywood, which accepted them immediately.

Reed’s bid for more time has entailed various surgeries, nine rounds of chemotherapy, radiation therapy, and some new treatments recently approved by the FDA. One was histotripsy, a noninvasive ultrasound procedure that liquifies tumors.

For a moment in August 2025, it appeared the treatments had worked. Then late last year, Reed learned the cancer had metastasized to his liver.

As a last resort, Reed’s oncologist told him he was a “perfect candidate” for Daraxonrasib. The drug functions by "gluing" to and deactivating overactive RAS proteins, blocking the signals that cause tumors to grow. RAS is an abbreviation for rat sarcoma, which is the most common mutated gene in human cancer.

Revolution Medicines blames Bionical Emas for drug delay

Marnie said she called Revolution Medicines in December to ask if her husband could be placed on a clinical trial, but she was told they "don't do compassionate use."

After the FDA and manufacturer announced the drug’s availability through the Expanded Access Program five months later, the couple was told there were delays due to distribution issues. Since that phone call, the company has not answered their calls, instead requiring them to go through their oncologist, Marnie said.

On June 16, Reed’s oncologist got through to the company, which told him the issues lay with Bionical Emas, a global drug distributor that focuses on experimental and unapproved drugs. Bionical Emas and Revolution Medicines did not respond to TCPalm's requests for comment.

All the while, they are wasting Reed's precious days.

Support from FDA, Brian Mast, Shark Tank star Mark Cuban

Marnie and her sister began making regular social media posts about Reed's fight for treatment. Some videos show Marnie explaining her husband's progress. Others show them walking for the PanCAN PurpleStride to fundraise for research.

One TikTok post gathered about 10,000 views. Eventually, they captured the attention of entrepreneur and former Shark Tank cast member Mark Cuban, whose team is trying to help them find connections higher up.

They also contacted U.S. Rep. Brian Mast, R-Fort Pierce, whose staff said they would try to assist.

Days later, on June 12, the FDA called Reed to help him apply for early access.

“I hope he gets it,” Mast told TCPalm. “Getting them to call is easier than lawmaking.”

Cancer diagnosis prompts world travel, wish list

After Marnie’s father died, the couple found a renewed sense of urgency to cherish each day, they said.

Photos of them smiling in front of the world’s wonders line their home's walls: Machu Picchu, the Pyramids of Giza, the Roman Colosseum.

Reed doesn’t want to miss anything, but there are some milestones he wishes to live for.

The couple planned to celebrate their retirement during a trip to Central Europe in October. What’s more, he wants to be present for Marnie’s 60th birthday in November 2027. And if he had his way, he would live to see the Miami Dolphins play in the Super Bowl.

But what matters most is seeing his three children, ages 34-37, succeed and grow, he said.

“I’m aware the drug is no cure, but I’m not ready,” he said. “There’s so much I want to do.”

Even if he was given only a few more days, their labors would be worth it, he said. Documenting their struggle on social media, they hope, may help others avoid a similar fate.

"We do it not only to help me, but to help someone else in the same boat,” Reed said. “If we can help someone else get this drug in their hands, that's why we're doing this."