New York, NY—Patients with cancer are not just faced with a terrifying disease; they must also surmount an uphill climb when it comes to accessing care. Advocates—some of whom have shared in their experiences as patients—are hard at work to ensure access is a reality. A roundtable discussion of patient advocates at the 2019 AVBCC Summit focused on identifying the major obstacles to care and what can be done to improve patient access.
Gregory Simon, JD, Past President of the Biden Cancer Initiative and a survivor of chronic lymphocytic leukemia, led the discussion, sharing his own bold ideas.
Access to Medicines
“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 recent study that showed that more than 50% of US households could not withstand a $500 emergency, she said that 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 people 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 noted that payers should realize that in the end, it is better if patients are able to continue the treatment pathway that was chosen for them by their oncologist.
In addition to premiums and copays, organizations such as CancerCare provide assistance with peripheral costs that are equally significant for patients. For example, Mr Simon said, patients can become understandably angry when, after paying astronomical costs for their treatment, 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,” Mr Simon said.
Access to Medical Records
Calling for change in another area, Mr Simon said that 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,” Mr Simon said.
Rose Gerber, a 16-year cancer survivor and Director of Patient Advocacy & Education for the Community Oncology Alliance, said that she 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 that 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.
Dr Kamin said that some oncologists believed that it could be harmful for patients to view their records without the physician there to provide context and interpret the results.
“I’m completely in favor that patients should have access to every part of their medical records immediately,” said Robert Miller, MD, FACP, FASCO, an oncologist and Medical Director of ASCO’s CancerLinQ. Dr Miller noted that anything that left room for uncertainty could be discussed at the patient’s next visit.
Dr Miller said that anxieties surrounding patient access to medical records are overblown and paternalistic. Gena Cook, Founder and President of Navigating Cancer, agreed. She said that when electronic medical records were introduced, oncology practices reacted with fears of pandemonium among patients. These fears were unfounded, she said.
Access to Information
Part of what Navigating Cancer provides, according to Ms Cook, is manageable portions of information patients can easily digest at each relevant point in their care. Another initiative has been translating the National Comprehensive Cancer Network (NCCN) guidelines into a patient-friendly format.
“I’m super passionate about that,” Ms Cook said, adding that it helps patients to know if they have the right doctors and the right treatments.
Clorinda Walley, President of Good Days, a nonprofit organization that provides financial assistance to patients with chronic diseases, said that 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 that 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.