Resident's battle with stage 4 cancer advocates for research

By Thomas Greenberg
Posted 11/29/17

By THOMAS GREENBERG The 60-year-old Ted Simon was a long-distance runner, always ate his vegetables, was never a smoker, and was looking forward to decades of good health" until he was diagnosed with stage 4 lung cancer in February of last year. It"

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Resident's battle with stage 4 cancer advocates for research


The 60-year-old Ted Simon was a long-distance runner, always ate his vegetables, was never a smoker, and “was looking forward to decades of good health” until he was diagnosed with stage 4 lung cancer in February of last year.

It started with a mild yet persistent cough and came as a shock to the Cranston resident of seven years who thought he was in great health.

The diagnosis changed his entire life, first by forcing his retirement as a researcher for Pfizer. He has since responded to the diagnosis by teaming up with the American Cancer Society Cancer Action Network (ASCAN) in Rhode Island to advocate for an increase in funding, research, and awareness, so that people battling cancer have a better chance to beat it in the near future.

Simon spent his career doing medical research of a different kind – on diabetes – first for Washington University in St. Louis and then for the drug company Pfizer in Connecticut until his diagnosis last year. Simon had his own lab, published papers, and saw firsthand how “research can turn into effective communication and cures.” Finding money for that research, he said, is the toughest part of battling disease.

His experiences as a medical researcher along with his nearly two year battle with stage 4 lung cancer have prompted him try to have a meaningful response to the diagnosis.

Stage 4 means that the cancer has grown out of the lung and cancerous tumors have developed in Simon’s brain, bones, and chest cavity. He’s been on a series of drugs that target mutations that make the cancer grow and has also gone through radiation for the brain tumors.

“The drugs have given me two years of decent life, which is so valuable to me,” he said.

He said that if he had this cancer 20 years ago, the outlook would be much different. That said the drugs he’s on now are nearing the end of their effectiveness and he’s waiting now to see if the brain radiation works, but that’s not a sure thing.

Simon referenced Joe Biden’s cancer moonshot bill that passed last year to give $6.3 billion of federal grants to cancer research independent of the budget. Now, he says, the White House is calling for drastic cuts in National Institute of Health (NIH) funding, which he sees as “a giant step backwards.”

“When I see cuts being made, you’re taking lives away from people 15 years from now,” Simon said. “There are so many valuable things that aren’t being funded. We need more tools in the toolbox.”

The lack of funding for cancer research has prompted Simon to team up ASCAN in Rhode Island to help lobby state legislators on lung cancer issues.

The ASCAN was founded in 2001 as the legislative branch of the American Cancer Society (ACS), according to government relations director Robert Dulski. Whereas ACS is a 501(c)3 and can’t have any contact with government legislation, ASCAN is a 501(c)4, allowing them to lobby legislative bodies while still benefiting from the funding that ACS gives them. 85% of their funding comes from ACS, Dulski said.

“The ultimate goal is to make sure that we’re direct with legislators and presenting issues that cut the threat of cancer out in people’s lives,” he said.

In reaching that ultimate goal, ASCAN has 15 volunteers, including Simon, and two paid employees in Rhode Island who work on the issues they see in the state.

According to Dulski, those issues include access to healthcare, preserving Medicare dollars to fight cancer, looking at tanning issues in regards to skin cancer, and getting the state to dedicate funds to cancer research and prevention.

In the next two weeks they’ll be meeting with the Department of Health as well as Governor Raimondo’s office to present their issues to them.

In regards to lung cancer, the organization has focused on how they can undermine cigarette and tobacco companies. For example, ACS was part of a legal battle between the federal government and tobacco companies about lying to consumers regarding the health of tobacco, Dulski said. There was a settlement this year and the companies’ dishonesty will be advertised on TV and in print media throughout the next year, according to Dulski.

“We want to avoid kids getting cancer,” he said. “The tobacco industry targets certain communities based on demographics. We want cancer to not be a problem at all. We don’t want to make smoking illegal, but we want to make sure it’s more difficult for people who are forming their lives, from age 16 to 21, to smoke.”

The ASCAN holds awareness events, such as a recent research breakfast at which Simon spoke to advocate for the organization, in addition to the government lobbying they do.

Both Ted Simon and ASCAN share the ultimate goal of winning the battle against cancer and are taking action to get there, so that a potential cancer cure can soon be “actual instead of virtual.”


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