First speaker - Denise DiSimone
I'll be quick. Good morning, ladies and gentlemen. Thank you for giving me the opportunity to speak with you today. My name is Denise DiSimone. I come before you as a representative of the head and neck cancer community. And neck cancer is a brutal cancer that affects not only the physical health of individuals, but also their emotional well-being and quality of life.
Survivors like me face numerous challenges, including the loss of vital functions such as speech, swallowing and even the ability to smile. These challenges are often compounded by the financial burden of excessive dental treatments required as a result of this journey. My personal journey began in 2005, when I was diagnosed with stage four throat and neck cancer. I was given three months to live.
At that time I was an executive and my career came to an abrupt halt. Treatments were brutal, as was the financial devastation I experienced and was never able to fully recover. Radiation is devastating in so many ways, and unfortunately, as my oncologist says, is the gift that keeps on giving. Hence the reason why, as time passes, dental complications worsen.
Also because of radiation. I was fed through a tube, cans of food for nine months, couldn't drink water, couldn't speak. And most days by noon, I lost the ability to talk and even have any energy to do anything. I learned to eat again by eating baby food. No cancer treatment is fun and head neck cancer is considered the worst.
I have spent thousands of dollars keeping my teeth in the best shape possible in my mouth healthy. This past year alone, I have spent $15,000 in dental bills and part of the cost was for oral surgery. The words surgery alone should indicate a medical condition that requires to be covered under insurance. Today, I urge you to support this bill.
This is this bill is not just about dental care. It is about restoring dignity, confidence and the ability to lead healthy and fulfilling lives. By passing this bill, we will have the opportunity to alleviate the financial strain on individuals such as myself dental treatments, implants, dentures, prosthetics. They're not mainly cosmetic folks. They are essential to restoring basic functions and improving overall well-being.
You know, moreover, covering dental bills for head neck cancer patients is not just a matter of compassion. It is a matter of cost effectiveness. Most diseases start and problems start in the mouth and they providing comprehensive dental care. We prevent further complications, reduce the need for additional medical interventions, and ultimately save health care dollars in the long run.
So I implore you to consider passing this bill by supporting it. You're not only standing up for the rights of head neck cancer survivors, but also demonstrating your commitment to accessible and equitable health care for all. Thank you for your kind attention and may you all have peaceful and healthy holidays from there.
Speaker 2 - Cathy Hapenney
Thank you for allowing me to testify in support of House Bill 1094. My name is Cathy Hapenney, a resident of Humarock, and I am a stage 3 Head and Neck Cancer survivor. May 5th, 2012, marks the day my world crumbled with the diagnosis of squamous cell carcinoma of the tongue and floor of the mouth. Little did I know that this moment began a challenging journey that would reshape every aspect of my life.
I underwent a 12-hour surgery to remove cancer in my tongue and the floor of my mouth, coupled with a neck dissection to eliminate affected lymph nodes. A trach was inserted to ensure I could breathe. Following this, I endured seven weeks of radiation therapy and five weeks of chemotherapy.
In 2018, as a result of my life-saving radiation treatment, I was diagnosed with osteoradionecrosis of the jaw (ORN). This brought about another 12-hour surgery where my jaw was rebuilt with my leg bone, and they removed all my bottom teeth.
Simple tasks that once felt like second nature are now daily battles. Making a simple phone call or expressing myself clearly is a struggle. The dryness in my mouth is a constant companion, waking me up multiple times each night. The ability to savor a meal by mouth is a distant memory, replaced by the necessity of a feeding tube for nutrition. Placed directly through the abdomen into the stomach muscle, its presence causes discomfort with every movement.
So far, I am free from cancer, but the difficulties from my medical treatments continue. Even basic tasks like interacting with voice-activated technology become a monumental challenge without my bottom teeth. Not many people understand how teeth impact the quality of speech. Alexa, meant to simplify life, doesn't comprehend my voice, I can’t use Bluetooth in my car, and I cannot go through a drive-through. I dread the thought of making a simple phone call. Voice recognition systems often leave me stranded, unable to connect with a live person. And if, by some miracle, I do manage to reach someone, the struggle intensifies. They can't understand me, and often I get hung up on. I can't convey my needs effectively because of the side effects of radiation therapy.
The challenges extend beyond the physical realm. Dental issues loom large, and conflicting professional recommendations regarding tooth extraction or root canals only compound the difficulties. The financial burden is staggering, with potential root canals estimated at $22,000, which seems insurmountable given the already steep expenses.
The emotional toll of facial disfigurement is profound, as is the struggle to maintain basic oral hygiene. My dependence on three specialized dentists and the hurdles in everyday communication further emphasize the isolation that survivors like me endure.
This brings me to a plea, a plea for your support for a bill that would cover dental expenses for head and neck cancer survivors. It's disheartening that survivors must bear the financial weight of medically related dental bills, considering the profound impact on our daily lives. Your endorsement of this bill is not just a lifeline for survivors like me; it's a guiding light as we strive to rebuild our lives after cancer.
Thank you for your time, your consideration, and, most importantly, for championing the rights and well-being of head and neck cancer survivors.
Speaker 3 - Amy Gross
Thank you, Mr. Chairman. And members of the committee. My name is Amy GROSS, and I'm a resident of Arlington, Massachusetts. I'm here in support of House Bill 1094, an act expanding coverage of dental procedures.
I am a stage two nasal cavity cancer survivor. I have been free of cancer for almost two years. When I was diagnosed, I was told the treatment, along with a long list of side effects, followed afterwards. The choice was pretty easy. Saved my life. One of the side effects included dry mouth. How bad could that be? And little did I know today.
I know according to the National Institute of Child Health, almost 75% of having neck cancer survivors will receive radiation and almost 90% will have some form of dry mouth at some time. The mask that Cathy brought was used for was also what I use for radiation and familiar for those in our community today. I know what a large part saliva plays in tooth protection and digestion, providing enzymes and microbes in addition to a protective moisture barrier.
And I gave you each a couple packs of saltines and I invite you to try a modified saltine challenge. You can do it now or later, trying to eat four saltines in 45 seconds without drinking water may allow you to experience what I go through in a 24 seven basis, even two years post radiation. You can imagine how this affects eating, chewing, speaking, swallowing and other issues.
Again, I am not alone in the situation. It's the most common side effect. We take extra measures constantly towards dental hygiene, like rinsing, brushing, etc. I fear the day when my preventive measures fail and I start down the road of root canals, crowns tooth extractions, dentures, implants. I may lose my teeth and I have no idea what's going to be covered.
I want to emphasize all cancer is horrible. My mother and entire breast cancer survivors. Next week, one of my best friends begins chemotherapy for breast cancer at Dana-Farber. Thanks to the women's health and cancer Act of 1998. They know their prosthetics, wigs, reconstruction that will all be covered in the history of the act is rather interesting to people diagnosed with head and neck cancer.
Do not have the support and we can't hide our mouths. Patients find themselves well into decades of survivorship having to argue with both insurance and dental insurance companies for basic oral procedures dentures, prosthetics and implants that impact our health and daily quality of life. I'm proud that the people sitting next to me and I want to ensure that you understood their testimonies.
Please support Bill 1094. Thank you.
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