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Financial Burden of Cancer: Breast cancer patients explain how to be your own best advocate

Sheila Deleon only heard one thing when she first learned she had breast cancer, “I am going to die.”

Everything else about her Stage III invasive ductal carcinoma breast cancer diagnosis was a blur. “That was the only thing that I heard.”

Like so many patients, her mind quickly moved to another daunting question: How was she going to pay for her care?

She opted not to wait to be told about her treatment options or receive sky-high bills. She decided to take control of her health care decisions and be “financially proactive.”

Sheila shared her story with patient advocates, breast cancer patients, survivors and caregivers at Patients Rising’s December advocacy event at The Alamo. “I decided one day… that I wasn’t going to be surprised by bills,” she said.  “I decided to call before every visit, every procedure, every hospital visit. They were going to tell me what my patient amount due was.”

Many times, her doctors couldn’t give her an answer. So, she’d shop around – checking with other doctors and different hospitals. Her proactive approach meant being flexible on how to get the treatment she needed.

“I ended up having two surgeries at once to try to save that cost. I had a hysterectomy and my thyroid removed at the same time,” she says. “It was scary, and it still is but we’re getting through it.”

Marjorie Gallece, a breast cancer survivor, and a patient advocate, helped guide Sheila through her journey.  She describes the role that fear plays in a patient’s decisions.

“Until you’re faced with this, you don’t understand that fear drives a lot of decisions,” she points out. “One of the first things I tell my clients is fear is a terrible decision maker.”

Combining surgeries and changing hospitals are just a few of the ways that Sheila has put into practice that oft-repeated advice to patients, “Be your own best advocate.” Her story also highlights the need for the patient voice in the discussion of healthcare economics.

“I didn’t go bankrupt because I learned how to use my resources, the best way I could,” she says. “To this day, I may have to go to a different hospital.”

Last December, Patients Rising hosted a patient education event for attendees of the San Antonio Breast Cancer Symposium. The conversation, moderated by reporter Stacey Gualandi, focuses on new approaches to enhance patient value and medical access amid rising costs of medical care. It includes discussions around alternative payment models, value-based partnerships, and the oncology care model.

“We need to listen and learn, take action and take charge,” says Terry Wilcox, co-founder and executive director of Patients Rising. “It all comes down to access, innovation, and reform.”

Informed Consumers: Is Health Care Different?

Healthcare in the United States has long been treated differently than other consumer products. Something as important as our health, the conventional wisdom goes, shouldn’t be treated in the same way that we pick out clothes or buy groceries.

Yet, the effect of treating health care differently has been for many patients to become more passive and less informed in their health care decisions. That’s especially concerning as more health care providers implement algorithms, clinical pathways and other systemic barriers to accessing treatments.

“There are some wonderful treatments out there that people are being barred from being able to access,” advises Marjorie. “You could have insurance and not qualify for a lot of things because you have incredibly lousy insurance.”

The problem, explains Donna Cryer, president and chief executive officer of the Global Liver Institute, is that value in health care often fails to incorporate the full patient perspective.

“Value, as it’s now talked about in health care, is often very disconnected from the patient world, and we need to change that,” explains Donna Cryer, an IBD and liver transplant patient who serves as president and chief executive officer of the Global Liver Institute. “Patients have the ultimate stake in policy conversations. Our lives are at stake.”

Health Care: Patient at the Center

Dr. Merrill Matthews, a resident scholar at the Institute for Policy Innovation, believes that an emphasis on consumer-driven health care will increase value and put patients at the center.

“In years past, the doctor was the center of it and everything circled around the doctor,” he says. “Increasingly, the patient is becoming the center of it and everything circles around the patient. That’s the kind of system we want.”

“We need to move to a consumer-driven health care system in which patients are looking for value for the health care dollars.”

Patient-centered value, according to health care payment experts, doesn’t have to be a zero-sum game. New innovations, such as telemedicine, are bringing a consumer-driven focus to health care while keeping costs down.

“Making sure in our contracts that we are able to provide telemedicine has been a really important resource for our centers,” says Ayanna Castro Clark, the Director of Contract Management for the Western Behavioral Health Network. “Our patients … sometimes travel up to 70 miles, if not more to get the care. It helps alleviate that travel time.”

Be Your Own Patient Advocate: “You fight for it. You get it!”

As new payment models are implemented, patients must continue to fight for access to the right care and treatments.

“You can’t just rely on the doctor to know best,” Sheila advises other patients. “You know your body best and if you need an MRI and you know you need an MRI, you get an MRI. Don’t leave and go, well, maybe a year from now. No, you fight for it, you get it.”

Sheila’s fighting spirit was encouraged with the help of Marjorie, her patient advocate.

“There’s a lot of things that I recommend to people and the last thing is to have a Marjorie,” Sheila says. “I had a Marjorie and I think that that was probably the best thing that anyone can do is get support.”

Watch: What is Value for Patients?


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