Patient Advocacy Stories: Helping People Access Supportive Care

Vicki reached out to me not long after her husband was diagnosed with peritoneal mesothelioma. He was losing so much weight that her first request was just for our nutrition guide. I’ve been helping them for about five months now, and Vicki and I talk at least every three weeks.

With the nutrition guide, and now that he’s in treatment, he’s actually eating again. I sent them our full information packet and some webinars too. He chose to do his treatment with his local oncologist, which was the right call for them.

Addressing Concerns About the Cost of Mesothelioma Care

Vicki’s husband is in his 60s and was working before his diagnosis, but he can’t anymore, so Vicki’s the only income in the house now. That’s a real weight on top of everything else, and she came to me wanting to understand how to choose the right law firm for his case and what they needed. I connected them with a national firm that has experience with cases like his.

We started with nutrition questions, then talked about treatment and now we’re talking through the legal and financial side. I’m still in touch with Vicki and we’ll keep talking as things come up.

Kevin reached out to us about a year or two after his diagnosis. By then he’d already been through chemotherapy and surgery and was starting his third round of treatment. He was looking for other people who understood what he was living with.

We talked through his options, and I helped him schedule with a few oncologists for a second opinion on that third treatment.

Finding and Giving Support

But what really brought him into our world was our mesothelioma support group. He joined and never really left. He shows up for it every time, and he’s become one of the people newer patients lean on the most because he’s been through exactly what they’re going through and isn’t afraid to talk about it.

Kevin is one of the people I’d point to if someone asked me what this support group is actually for. It’s not just information. It’s someone who’s already lived it, telling you that you can get through it too.

Betty reached out to us in 2025, not long after she was diagnosed with peritoneal mesothelioma. She wanted help finding a doctor through our Doctor Match program, so I started looking at UVA Augusta for her care.

Betty decided she wanted to stay local instead, and that was her call to make. She’s been on immunotherapy for about a year. She’s not a candidate for surgery, and immunotherapy caused a flare of her rheumatoid arthritis at one point, so she had to pause treatment for a while before starting back up.

Checking In With Betty

Betty doesn’t have a family caregiver. She lives alone in Virginia, and when we talk about what she needs, she hasn’t wanted to pursue financial assistance. What she’s needed is someone checking in.

So I call her regularly, just to see how she’s doing. When we hit the one-year mark since her diagnosis, I called to celebrate it with her. She didn’t end up going with the doctor I first connected her to, and that’s fine. My job isn’t to make sure patients follow the plan I suggest. It’s to make sure they have what they need to make their own decisions and someone to call when they want to talk something through.

I’m still in regular contact with Betty today. I check in, answer her questions and make sure she has the resources she needs.

She’s a retired schoolteacher in her 80s, living alone in upstate New York. Everything is a long drive from where she is, and she doesn’t have anyone who can take her to appointments far away. She has friends and neighbors, but they’re older too, dealing with their own health.

She first reached out just wanting our mesothelioma packet, specifically the nutrition guide, and I sent that to her. She’s fiercely independent and pretty resistant to help in general, which worried me because she’s entirely on her own.

Planning for Future Care

When financial assistance came up early on, she told me she didn’t need it. She said she wouldn’t have anyone to provide for or leave money to. But more recently, she’s been thinking about what she’ll need if her condition progresses and how she’d pay for care. I talked through her options with her.

What she wants most is to fund an in-home caregiver so she can keep her independence, along with rides to get her to appointments and wherever else she needs to go. I connected her with legal assistance to help her pursue financial support for exactly that, a caregiver and transportation, going forward.

I call her regularly. We talk about what she needs and how I can help.

A family called me not long ago looking for hospice information for their father. He’d been in treatment with a local oncologist, but they’d reached the point where it was time to think about hospice instead.

I got everyone on a Zoom call together. I explained that two doctors have to sign off before hospice care can start, and I walked them through the difference between in-treatment hospice, which tends to be short-term, and in-home hospice, which is usually the better fit for a longer-term need. Some families just prefer having their loved one at home too. They’d had a bad experience with a facility during a previous relative’s hospice care, so that mattered to them.

Choosing the Right Hospice Care

I gave them a list of questions to ask any hospice provider they were considering: what type of care they offer, what certifications and licenses their staff hold, how often their doctors and nurses turn over and how they approach pain management. Hospice care is about pain management and comfort, sometimes antibiotics for an infection or other ways to ease discomfort, but it isn’t curative treatment. Their father had already done chemo, and at his age, it wasn’t helping him anymore.

They chose 24/7 in-home hospice, and I also connected them with legal help to cover the cost of that level of care. Insurance usually covers some of it, but families are often left with real expenses on top of that, and this family wanted to be prepared for all of it.

Berlinda was a science teacher in New Jersey and a minister to her congregation. When I first spoke with her in July 2024, I was struck by how positive she was. That’s unusual for someone who just found out they have a rare, aggressive cancer, but it was who she was from the very first call, and it stayed that way.

We stayed in regular contact for about a year. There was some early confusion about her exact diagnosis, since pleural and pericardial mesothelioma share overlapping symptoms and pericardial is exceptionally rare, but that got sorted out, and she moved forward with immunotherapy at Mayo Clinic in Jacksonville.

Sharing Her Mesothelioma Story

Berlinda wanted to share what she was going through with other survivors and with anyone trying to understand mesothelioma better, so she took part in a series of survivor stories with us. She talked about her diagnosis and her treatment on her own podcast too, and she was open about all of it with her congregation.

Berlinda passed away. She spent the time she had helping other people understand this disease and facing it with more grace than most people manage on an ordinary day. I think about her positivity often, and about how she chose to use her story to help the people who would come after her.