Speaker 1 - Robert David
Thank you to all the members of the committee for this opportunity. My name is Robert David, resident of West Roxbury, and I'm the manager of the Cancer and Sickle cell support programs at Boston Medical Center. I've been doing that for 15 years. In my time, I can say I've worked with approximately 2000 cancer patients, all different types in various capacities.
I run a lot of cancer support groups. I'd say in the last 15 years I've run well over a thousand sessions. Cancer, any type of cancer is no picnic for anybody, as we all know. And I'm sure everyone in this room knows people who have experienced cancer. The remarkable thing in my privileged position of hearing people talk about their experience is I hear so many stories of strength, resilience, capacity to endure a lot, to find reasons to keep going and to live.
It's profound. I really feel privileged to have that. I can say that in the various support groups I have run for different cancers and in the people I've known, head and neck cancer is probably well, if not the certainly one of the most insidious in that the after effects are enduring. And as Denise de Simone, who's testified earlier, said, radiation is the gift that keeps on giving.
You know, cancer can affect people physically, emotionally, socially, with head and neck cancer survivor, as it does all of those things on a long term basis. It can also affect call into people's call into question people's spiritual strength to yes for head and neck cancer. You know, surgery can lead to deformation and constant adjustments that one has to make, including dental adjustments, dental prostheses that may have to be made to just to be able to chew, to be able to maneuver your mouth.
That's from the surgeries. Radiation has other kinds of insidious effects, such as damaging your salivary glands so that virtually everybody who has radiation in the mouth ends up with dry mouth swallowing problems, muscular problems that because radiation hardens the tissue, it doesn't soften over time, it gets harder over time. So these these conditions persist. I speak speech issues.
I think I mentioned swallowing. Can you imagine? You can no longer go out and enjoy lunch with friends. It's a hard thing to do because you have to cut your food up really small and take an hour to eat it, whereas other people are done much more quickly. It's hard to talk all kinds of things. I'd rather you hear from people who have experienced it themselves.
I had. yeah. I wanted to mention that I'm in the privileged position also of knowing these patients for years. Doctors work with them and they do their great work curing the cancer, which is their first and foremost challenge. But they're not always there to deal with the long term side effects. I've known Randy here for about seven, eight years.
Other patients, I've had others who wanted to be here, but one is an 89 year old woman I've known for 15 years. So a lot of dental issues. Another is they will all be submitting written testimony. Joy Associate Jason McDonald. Susan Currie Please be on the lookout for it because they're all powerful speakers. They just couldn't be here for very a funeral being sick.
But they would have been here. But I just want to say it's heartening to hear the voices of patients themselves. It's heartening to hear a lot a lot of the testimony here today speaking in favor of the needs of patients. So with that, I'll wrap up my time.
Speaker 2 - Randy Sheffield
My name is Randy Sheffield. I I'm a stage four cancer survivor, head neck cancer survivor IV. And I think the common thing with cancer patients in general, when you tell people, I'm cancer free, they think, you know, that's it. You can't your support system kind of fades away. And like I always tell Bob, like, you know, I'm a strong I have a strong faith in God and I take them everywhere I go.
I told the doctors I'm be a miracle patient. They said the other because I had stage four cancer from secondhand smoke and the smoked, but I didn't want to go through that to the whole story because I'll take up way too much time. But based on the dental portion of the complications from the radiation, it deteriorated like my surgery, Like from here to here, I have no foam gum teeth for me here up in the top and on the bottom.
But with the radiation, it deteriorated. Bone it. My gums are receding. It's it's a very thin and fragile. So with the dental coverage would help us with more options and keeping things more healthy or being able to get like the press. These six plus this sticks. My tongue is tied to the side. My mother's numb because of the surgery.
Like, I can't tell if I'm drooling or I bite my my gum. I had one tooth here, a molar they left there. But because of the deterioration of my bone from radiation, I'm sleeping on my left side. You know, my mother's extremely dry. I'm like, sometimes so dry. My tongue is, like, stuck to my mouth when I wake up.
But I was sleeping on my left side and I felt something in my mouth. I got to spit it out. The whole molar just fell out my mouth, the root, the whole tooth scared the daylights out of me because they said, if you get a hold over it, it'll never heals of complications. You know, I panicked and there's a lot of times people say, you're cancer free, but there's so many different things we have to go through because of the radiation, dental issues and a lot of these things aren't covered.
And that's why I'm here today. And I come from time and it took me over 2 hours to get here today because the traffic and everything. But I wanted to be here in person because very important to me. And I think passing this bill H1094 will help us all. And in a better way to just kind of ease the rest of the issues that we have.
Because like this as a gift that's never ending, because this stuff is ongoing. And I always say like, I don't feel like I've been through what I've been to, I, I'd like to think about it too long or look in the mirror too long because I still don't feel like I because when it does, it's only stage four.
I'm like, Are you sure you got the right person? Because I feel fine, you know? But here I am, a survivor of ten years, so I'm very thankful for God for that. And I just pray that you guys put this through because it will make it better for all of us. And thank you for having me. E
Speaker 3 - Judy Burton
Hi, my name is Judy Burton and I'm from Newton, Massachusetts, and I'm I'm an almost 20 year cancer survivor.
I wrote up the whole thing, but much of what I wrote up has been said when I was diagnosed, I was told I had the best kind of cancer because it was curable, but they never told me about radiation. The gift keeps on giving. They never told me that the radiation would cause many, many issues later on. Maybe they didn't know what 20 years ago, but the cost to address situations that are occurring in my mouth are prohibitive for me to even be going and seeking getting things fixed.
Last year I had three crowns fall out. Fortunately, it was just the crowns, but I was told if they fall out again, I'm going to be facing probably a total mouth reconstruction at some point, which would be prohibitively expensive. I'm diligent about my care of my oral cavity because I have to all of the things that everybody else has said I've had and then some.
I don't want to take up the time of the committee going through the detail, but to please consider passing H1094 for the benefit of us and for all of the people that are upcoming would be greatly appreciated for the time that any of us may need it. Thank you very much.
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