RISE’s annual summit is quickly approaching, taking place April 15-17 in New Orleans, with a supreme agenda featuring more than 80 leading presenters, over 30 action-oriented sessions, ample networking opportunities, and four preconference workshops. Ahead of the conference, RISE spoke with patient advocate Charlotte Safrit, who will sit down with a fellow patient advocate for a candid fireside chat on the reality of being a patient and consumer in the health care system.
Charlotte Safrit, a breast cancer survivor and community organizer, and Indie Rodriguez, who was diagnosed with Schwannomatosis in 2016, will take the stage at The RISE Summit on Social Determinants of Health on Wednesday, April 17, for a vulnerable conversation about their patient experiences, sharing the realities of being a human, a mother, and a patient trying to navigate assistance programs while battling health issues.
Here are questions we asked Charlotte ahead of the summit:
Q: Can you share a bit about your story and how it has led you to your work today as a patient advocate?
A: I guess it really all started with my mom. I didn't really know that I became a patient advocate a long time ago, but I did. My mom was diagnosed with breast cancer in 2008. I moved back home to help her get through treatment and to help her, so I became her caregiver. I didn't really know what that term meant at the time, but to me it just meant going to all her doctor’s appointments, taking notes because she was too emotionally unavailable to retain the information. So, my job was to do all the research, take all the notes, talk to her doctors.
Shortly after my mom passed, I gave birth to my son. While I was still breastfeeding him, I started getting stabbing pains in my chest. I kept asking my doctors when I could get my first mammogram given that I was over 40 and had family history, but I was told I couldn’t until I had weaned my son and even then, had to wait six months because the breast tissue is too dense to see anything.
Eventually when I did have my first mammogram, they found cancer. I had my operation; I got a double mastectomy with reconstruction. It had spread to a lymph node, which meant I had to have chemo, had to have radiation.
However, since creating my Breast Cancer Support Group, I have had two new moms join recently and they had to fight to get any sort of imaging done. So, I finally sat down and looked it up, and there's no reason that you can't have imaging done. It's right on the La Leche League website that you can have imaging done when you're breastfeeding. And the American Radiological Society also says the same thing. So, that's when I really started recognizing that there was a need for me to step out of my comfort zone and start speaking about this issue.
Q: Through your own firsthand experiences as a patient in “the system,” what were the biggest gaps and/or challenges you experienced?
A: It really starts with just listening to the patients. I would say, truthfully, the biggest gap is between doctors and patients. There needs to be a person in the middle, a liaison for instance. Some hospitals fill the gap with patient coaching programs. They train the patients to come in and volunteer. You're assigned certain patients, and you go along their journey with them and just talk to them about things such as their treatment, their life, so that you can help give that information to the doctor, so they know how to treat that patient.
I only got through this experience because I had a great friend support system here and I have a great partner who was able to support me. You’re given so much information at once. When you get diagnosed with cancer, you're in shock for the first month or two and you're just trying to make it through the next day. And then you go in, and you see all these specialists and they give you all this information and it's like this tidal wave of overwhelming information. And when you wake up from surgery, you’re loopy on painkillers and they come in and give you all these instructions and all these papers. And then they release you to go home. And, if you’re lucky, you have someone to help you. But if you’re not, then you’re not going to know what to do.
Q: What supports do you feel could have improved your own experiences as a patient?
A: So, in one of the patient systems I have been in, they did have a nurse navigator, and I think the nurse navigator idea is great if the nurse navigators are trained appropriately. There are things that would have been more helpful in my experience with that role, but I think the main idea, whether it be a nurse navigator, patient coaches, or a mentor, could be extremely helpful.
The RISE Summit on Social Determinants of Health will take place April 15-17 at the Hyatt Regency New Orleans. Click here to learn more, including the full agenda, registration, and attendance details.