1 week Ago
My husband, Mark Gilhuly, was the kind of person who lived life at full speed. A runner, golfer, cyclist and swimmer, Mark completed 24 marathons and more than 50 triathlons, including an exhausting Ironman triathlon.But his true joy was announcing sporting events that supported local charities, including the New Haven Labor Day Road Race and the Fairfield Half Marathon.
Mark was known as the “Voice of Summer,” but more than that he was a voice of happiness, positivity, kindness and passion. He loved life, and he loved people.Runners make their way up Elm Street at the start of the 46th Annual Faxon Law New Haven Road Race, New Haven, Conn.
, September 4, 2023. Photo by Cloe Poisson/Special to the CourantTwo years ago, Mark began losing muscle mass and feeling persistently tired. Concerned, we scheduled a visit with Mark’s PCP who ordered a battery of tests.
He then soon delivered to us a devastating diagnosis: Mark had pancreatic cancer. The prognosis was grim because fewer than one in 10 patients survive five years beyond diagnosis. Yet Mark, ever the competitor, approached his battle with the same determination he brought to life and his racing events.
Mark’s treatment involved grueling chemotherapy and several complex surgeries. As he fought with everything he had, I soon realized that managing the disease involved navigating a complex web of medical decisions and logistical challenges such as scheduling and rescheduling appointments, finding the right providers, researching new ones, and much more.Even though we thought we had a decent knowledge of the health care system, there were constant challenges.
If Mark was struggling, I knew others were as well. Luckily, we met several health care heroes along the way, and also had family, neighbors and friends to help us. Some call this process a journey, but I often felt it more like riding the Disney “Tower of Terror.
”Pancreatic cancer is the second-leading cause of cancer deaths in Connecticut according to the American Cancer Society. The harsh reality for this type of cancer is that by the time symptoms appear, survival rates plummet. But there is hope—early detection.
If you have a family history of pancreatic cancer, get screened. If you carry a genetic mutation like BRCA2 or Lynch Syndrome, get screened. We hear the phrase often, but it bears repeating: “early detection saves lives.
”Thanks to the leadership of the Connecticut General Assembly’s Public Health committee, additional help is on the way. They acted decisively early in the session to propose Senate Bill 1191 to establish a pancreatic cancer screening and treatment referral program within the Connecticut Department of Public Health. This mirrors successful screening and treatment referral programs that the department oversees for breast cancer and lung cancer.
The full committee voted unanimously for the bill at their meeting on February 10, clearing the way for action by the 36-member state Senate.Pancreatic cancer disproportionately impacts underserved communities, where barriers to healthcare access unfortunately persist. Black and Hispanic communities have a higher risk of the disease, while new data is showing a troubling spike in the rate of this cancer among younger women.
Senate Bill 1191 would help bridge this gap, ensuring that screenings and treatment referral services are there for those who need it, including families who have private health insurance but cannot afford their deductible or co-pay.I have spent the better part of my life working at the State Capitol to advocate for many policies, including those that support our healthcare system, medical professionals and the patients they serve. Although my “Voice of Summer” is gone, we now have the chance to use our collective voices to save lives.
That’s what Mark wanted, and so my advocacy now for the patients and families who are affected by pancreatic cancer.Senate Bill 1191 isn’t just legislation, it’s a lifeline. Let’s pass An Act Establishing a Pancreatic Cancer Screening and Treatment Referral Program, so that Connecticut can win the race against this devastating disease.
Linda Kowalski is a government relations professional who lives in Branford, Conn..
