Ensuring Patient Access to Cancer Care in an Evolving Landscape

Conference Correspondent - AVBCC 2019 Summit

Patients with cancer are not just faced with a terrifying disease; they must also surmount an uphill climb when it comes to accessing care. Fortunately for them, advocates—some of whom have shared in their experiences as patients—are hard at work to ensure this access. A group of patient advocates convened for a roundtable discussion at the AVBCC Summit to identify the most formidable obstacles to care, as well as what can be done to clear the path for greater access.

Gregory Simon, JD, Past President of Biden Cancer Initiative and a chronic lymphocytic leukemia survivor, led the discussion, sharing his own bold ideas.

“I’m of the opinion now that we have to start becoming radical,” he said, adding that one cannot claim to care about cancer while wanting to do away with the Affordable Care Act. “I don’t think there should be copays for cancer medicines. Period. Full stop.”

Mr Simon pointed out that copays are in part meant to quell overutilization of drugs, something that does not apply in oncology.

Patricia Goldsmith, Chief Executive Officer of CancerCare, agreed that radical solutions are in order. Citing a study that indicated more than 50% of US households could not withstand a $500 emergency, she said even if drug prices were slashed by half, it would not be enough to make them accessible for patients with cancer.

“There really has to be accountability in terms of insurance,” Ms Goldsmith said.

Although incremental change is decried by some as insufficient, it does result in progress over time, said Deborah Kamin, RN, PhD, Vice President of Policy and Advocacy for the American Society of Clinical Oncology (ASCO). She added that payers should realize it is better off in the end if patients are able to stay on the treatment pathway chosen for them.

Looking outside the costs represented by premiums and copays, organizations like CancerCare and others provide assistance with more peripheral costs that are equally significant. For example, Mr Simon said, patients can become understandably angry when, after paying astronomical costs for care, they are charged $40 for parking at a cancer center. He cited the assistance programs offered to patients by Airbnb, Uber, and Lyft.

“This is simple stuff that makes a huge difference,” he said.

Calling for change in another area, Mr Simon said it should be the default for patients to have full access to their medical records.

“The healthcare system is built on the lie that the companies own the data,” he said.

Rose Gerber, Director of Patient Advocacy & Education for the Community Oncology Alliance, and a 16-year cancer survivor, said she has dealt with frustration in trying to obtain her medical records. She added that a true medical record should include the physician’s notes on a patient, recalling when she was accidentally given access to her own physician’s notes when they were left in view.

“I learned some very powerful things,” Ms Gerber said, adding that although some of the notes may not necessarily be medically relevant, they can be insightful, nonetheless.

In Dr Kamin’s experience, some oncologists felt it could be harmful for patients to view their records without the physician there to provide context and interpret results.

“I’m completely in favor that patients should have access to every part of their medical records immediately,” said Bob Miller, MD, FACP, FASCO, an oncologist and Medical Director of CancerLinQ at ASCO, adding that anything that left room for uncertainty could be discussed at the patient’s next visit.

Dr Miller said anxieties surrounding patient access to medical records are overblown and paternalistic. Gena Cook, Founder and President of Navigating Cancer, a patient-centered technology platform for oncology, agreed. She said when electronic medical records were introduced, practices reached out with fears of pandemonium among patients. These fears were unfounded, she said.

Part of what Navigating Cancer provides, according to Ms Cook, is manageable portions of information patients can easily digest at each relevant point in the care continuum. Another initiative has been translating the National Comprehensive Cancer Network (NCCN) guidelines into a patient-friendly format.

“I’m super passionate about that,” she said, adding that it helps patients know if they have the right doctors and right treatments.

Clorinda Walley, President of Good Days, a nonprofit that provides financial assistance to persons with chronic disease, said the NCCN guidelines are helpful in telling patients what questions to ask about their care.

Speaking to the sometimes disparate interests of healthcare company heads and patient advocacy leaders, Mr Simon raised the question of how this barrier can be overcome. Ms Goldsmith said it comes down to data and results, adding that advocacy groups must claim their power.

“We have to be more comfortable getting in people’s faces, because dammit, we do great work,” she said.