Women work with American Cancer Society’s Cancer Action Network to advocate for legislation
OCEAN CITY — Jeanmarie Mason is battling breast cancer. Her daughter is fighting cervical cancer. Her husband was diagnosed with prostate cancer.
‘While I’m still above ground, I’m going to let my voice be heard in an educated, informed and passionate way in order to help others, not just me, but to help the community at large. That’s my goal.’
–Jeanmarie Mason, cervical cancer survivor
In spite of the challenging family experience, Mason and her daughter have been speaking out about the need for cancer screenings, legislation to help with the overwhelming medical debt than often accompanies the devastating diseases and trying to end smoking in Atlantic City casinos.
“I am in remission and I’m very grateful for that, but I’m still being treated monthly with injections,” Mason said in a late-January interview with the Star and Wave. “My daughter is now starting. She finished chemotherapy, which was very difficult for her, and now she’s starting radiation, so I would say she’s doing OK. I mean, we’re both doing OK.
“I wouldn’t say we’re doing fantastic but we’re above ground and we’re advocating for cancer screenings and research,” she added.
Last year’s fight: Debt Relief Act
One of Mason’s priorities last year and into this year is on the legislative side, working with the American Cancer Society’s Cancer Action Network.
She and her daughter, Julie Groob, 39, joined other patient advocates getting New Jersey legislators to approve the Louisa Carman Medical Debt Relief Act. Gov. Phil Murphy signed it into law last July.
The law prevents medical creditors and medical debt collectors from putting debt on consumer reports of their credit, charging interest of more than 3 percent a year on medical debt, garnishing wages of patients with annual incomes less than 600 percent of the federal poverty level and limiting debt collection actions.
“For many people, when you’re diagnosed with cancer, it’s unbelievable the amount of additional expenses that you incur,” Mason said. “It’s astronomical. If you get a diagnosis of cancer, not only are you worried about your treatment, your mortality, but you’re worried how you can survive financially.
“For my daughter, who is a double ostomate, she needs all these supplies to keep her functioning and that is in addition to her astronomical treatments,” Mason said. For herself, she said it was going to cost her $15,000 for a specific pill she had to take.
“Both of us were not able to get financial assistance because we’re right above the guideline in which you could qualify. At some point I thought to myself, ‘Wow, you know, I’m really being penalized because I really worked hard throughout my career and so did my daughter,” she said.
Mason said she was fortunate that Medicare has a $2,000 maximum outlay on prescriptions, but worries what may happen under the new administration with the many changes taking place in the federal government right now.
“I don’t know if that’s still going to stay, which scares me to death,” she said.
This year’s fight: Early Detection
“Future generations needn’t die from cancer,” Groob told the American Cancer Society. “If we prioritize improving access to early detection, we can prevent countless deaths from diseases, like cervical and prostate cancer.
“As a cervical cancer survivor and daughter of both prostate and breast cancer survivors, I hope state lawmakers take the opportunity to increase screening uptake and save lives by funding the New Jersey Cancer Education and Early Detection Program and advancing forthcoming legislation that aims to eliminate cost-sharing for prostate cancer screening for certain high-risk individuals,” she said.
“Where we can’t prevent disease, we should equip patients with the best tools to fight their illness, and biomarker testing makes that possible by connecting patients to personalized treatment,” Groob added. “But lack of insurance coverage limits who can receive the game-changing testing. Survivors are looking to change that with Senate Bill 3098/Assembly Bill 4163.”
The bills would require health insurers to provide coverage for biomarker testing for Medicaid and state-regulated insurance plans. The Senate version was unanimously voted out of the Senate Commerce Committee in mid-December and the Assembly version reported favorably by the Assembly Appropriations Committee about the same time.
Groob, Mason, fellow patients advocates and other public health allies are aligned in the fight to improve access to biomarker testing, eliminating financial barriers to prostate cancer screening and ending the casino loophole that allows smoking, according to the Cancer Action Network.
“Another thing that’s important for me is early detection, getting the word out for men with prostate cancer,” Mason said. “My husband now has prostate cancer. so now we’re a family of three with cancer, but luckily he’s going to die with it instead it from it hopefully. His brother had it, his father had it, but there’s so many environmental factors that are factors that really are contributing to people getting cancer. The early detection for me is key and how to prevent (includes) working in a smoke-free environment.
“Legislative advocacy for me is the priority and since Atlantic City and the casinos are so close to home, it’s really important that we look at all the possible contributing factors to cancer of any kind,” Mason said. “When you walk into the casinos and you breathe in that smoke-filled air, I can’t imagine what it’s doing to the employees who have to live with that and work with that on a daily basis. Secondhand smoke definitely can contribute to cancer, so I don’t even go to the casinos anymore.”
Biomarker testing helps people understand if they are at risk. Mason said she found out dense breasts are an early indicator of possible cancer.
“With any kind of screening that you can do while you’re young, it’s a way to be more educated, more knowledgeable. Have those discussions with your oncologist to say, ‘OK, what about this? What about a clinical trial?’ So when we go to a lot of these conferences, we hear about the latest medications that are helping us to live longer,” Mason said.
“Over 57,000 New Jerseyans heard the words, ‘you have cancer’ last year,” according to Quinton Law, government relations director for the American Cancer Society’s Cancer Action Network in New Jersey. “State lawmakers have an opportunity to lessen the burden of a cancer diagnosis for those who will hear those words in the future by removing financial barriers to prostate cancer screening, improving access to precision medicine through biomarker testing and providing casinos workers with a safe, smoke-free work environment.”
Research funding
Mason was an advocate for the nonprofit group Living Beyond Breast Cancer and went to Capitol Hill to talk to legislators about the importance of research funding for metastatic breast cancer.
“Only 5 percent of money goes to funding research, and that’s just abominable. We have to do better and we need to make sure this administration keeps the funding in place for cancer research,” Mason said. “As adults, one in two of us is going to wind up with cancer. Look at my family alone, there you go.”
She said of her friends who have retired, two have breast cancer, one had ovarian cancer and another just was diagnosed with bladder cancer. “These are old women, and so you know we’ve got to increase the funding for research.”
Mason supports the American Cancer Society.
“Absolutely,” she said. After she provides for her children when she dies, what’s left over goes to the organization.
“I’ve already put that in my will because there’s so many people affected. I’m talking about every kind of cancer,” Mason said.
Despite talk of her will, don’t count her out of the fight yet.
“I have a lot of issues that hopefully I can speak about coherently and advocate for, especially as we move into the new administration,” Mason said.
“While I’m still above ground, I’m going to let my voice be heard in an educated, informed and passionate way in order to help others, not just me, but to help the community at large. That’s my goal.”
By DAVID NAHAN/Cape May Star and Wave
