For Jehan “Gigi” El-Bayoumi, M.D., RESD ’88, associate professor of medicine and of prevention and community health at the GW School of Medicine and Health Sciences, her cancer diagnosis was a shock to the system. “If you were to ask me about the day I was diagnosed, I couldn’t tell you anything about the conversation. I heard ‘cancer,’ and that was it.”
As she explained at the inaugural GW Cancer Institute Access to Care Policy Summit: Washington, D.C. on May 11, patients retain just 50 percent of information after diagnosis. “That’s in the best scenario,” she said. “Because all you hear is wah wah wah; you’re just in shock.”
And the diagnosis is only the beginning. Add to that financial constraints, a potential lack of accessibility to care, and logistical factors, such as transportation, and survival becomes a mountain of procedures, paperwork, and headaches. In Washington, D.C., the complications of cancer are even more pronounced.
“Despite widespread health insurance coverage rates, D.C. residents battle significant cancer health inequalities, creating a tale of two cities when it comes to cancer care and outcomes,” reported the GW Cancer Institute in a needs assessment. “Patients, providers, payers, policymakers, community groups, and hospitals face varied challenges in ensuring access to care for the highest-risk populations.”
For that reason, the GW Cancer Institute invited what Mandi Pratt-Chapman, M.A., director of the GW Cancer Institute, described as “individuals who were in strategic positions to be able to make changes on a national, community or institutional level” to the summit to search for solutions.
“I’ve really wanted to bring people together for years who came from different perspectives so that those who are in charge of policies around Medicaid, those in charge of managed care organizations, administrators in the hospitals admitting patients, outpatient clinicians, cancer patients and patient navigators could all hear from each other so that we can identify at least one strategy to advance access to quality care in the District,” said Pratt-Chapman. “Even if it’s not solving the whole problem, we’ll get one step closer to a better system for cancer patients in the next 12 months.”
First on the summit’s agenda was tackling what’s working and what’s not in cancer care. A panel of four experts — El-Bayoumi; Fernando Ascencio, M.B.A., executive director of Nueva Vida; Jacqueline Dunmore-Griffith, M.D., radiation oncologist at Howard University Hospital; and Don Shearer, director of health care operations administration at the Department of Health Care Finance — described cancer care from each of their perspectives. Boiled down, Hispanic and African American patients, who have a much higher incidence of cancer than white patients, are severely disadvantaged. Many are uninsured or underinsured, and a lack of cultural competency makes translating — both from Spanish to English, and from doctor-speak to patient-speak — a significant barrier. Understanding provider networks and coverage processes adds additional obstacles.
“You have a lot of people who get discouraged [trying to navigate cancer care],” said Stephen Jefferson, outreach specialist at Community Wellness Alliance and a cancer survivor. “You need to get out into the community yourself and ask folks, ‘what is going on?’ so that you can actually hear from them, and they can take you through what they’re dealing with.”
El-Bayoumi and Kadija Ash, program support specialist with the Cancer Programs Division of the Department of Health, also pointed to missing long-term mental health support. “I felt, after my treatment was over, that I had come through with flying colors, breaking the ribbon, hands in the air, and then I fell off the cliff,” recalled Ash. “I wasn’t able to take a pill or something that would help me tether to the fight. You try to live one year, then you try to live three, then you try to live five, and you say, ‘Well, I guess I’ve survived.’”
After delineating the myriad issues for patients, providers, and clinicians, summit participants turned to solutions and a “shared vision of success,” or what equitable access to cancer care would look like in Washington, D.C. The result was a streamlined approach to what El-Bayoumi called “a broken system.” Top priorities were financially supported and plentiful patient navigators; more providers taking Medicaid as front-line insurance; flexible hours for cancer services; cancer services available east of the river; simpler documentation for insurance and support services; adequate funding and resources; a transparent system; and educated and empowered patients. Action plans, accounting for necessary personnel and critical success factors, outlined step-by-step how to translate ideas to realizations.
“We’re dealing with issues that are sensitive to people, but it seems to me that everyone is committed to getting to the bottom of what the problems are so that we can collectively create a better cancer care system,” said Pratt-Chapman, who added that she intends for the summit to be an annual event to continually improve care for cancer patients in the nation’s capital. “We are collaboratively selecting the top barrier to work on this year. We will establish a task force and a plan to accomplish short-, medium-, and long-term goals. Today is not the end of the conversation.”
