Help for Lung Cancer Patients
Lung cancer expert Joy Feliciano has a specific clinical interest in reducing barriers to treatment for minorities and the underserved. Among these groups, she says, many are diagnosed with the most advanced stages of lung cancer and resist treatment for economic reasons. Dr. Feliciano is committed to a new approach to personalized care—collaborating with colleagues at Johns Hopkins and other Maryland institutions to address ways to improve early detection of lung cancer, smoking cessation and to begin to address things like cost of transportation to appointments, drug affordability and other economic factors that deter many Marylanders from seeking and continuing treatment for lung cancer.
Through various research efforts and pilot projects, Dr. Feliciano and her colleagues are chipping away at the barriers to care that reduce the chances minority and underserved patients will survive their illness.
Feliciano practices out of the Kimmel Cancer Center at Johns Hopkins Bayview Medical Center, the hub of its thoracic cancer services, where about 90 percent of the patients seen have some type of lung cancer. In her practice, she worries that she too often sees a patient for the first time when he or she already has advanced lung cancer. About one-quarter of her patients are African-American or other minorities, and many of them have no insurance, receive Medicaid or are underinsured.
Her goal is to see patients sooner, before the cancer has spread. She cites a large 2011 lung cancer study of 53,000 patients that found screening could be effective in reducing lung cancer deaths by finding cancers at an earlier stage, but only 4 percent of the people in the study were nonwhites.
“To me, the question is how do you apply these results to the population we serve in Maryland, where 40 percent are African-American or other minorities,” she says.
She recognized that this dilemma started well before patients ever got to her. A lack of access to primary care physicians who can offer cancer screening and other preventive health care was contributing to the late stage at diagnosis. The patients she saw also had other medical issues, including heart disease and diabetes.
“These are patients who often do not have primary care physicians to whom they can bring their complaint or have a person who is monitoring them regularly,” Dr. Feliciano says. “They may not be evaluated early enough when they start to have symptoms.”
People who lack access to primary care also are unlikely to undergo screening for lung cancer, even if their risk for developing the disease is elevated—if they have a family history, they smoke or have been exposed to certain chemicals in the workplace.
“So many people have the false idea that screening is only if you have symptoms,” says Feliciano. “The point of screening is to get you when you don’t have symptoms so the cancer can be cured.”
Her experience has been that people are receptive to screening information. Most have a family member who has had cancer, and many of them fear cancer. “They ask me, ‘Why have we heard about colonoscopy and mammograms, but not lung cancer screening?’” she says.
Even when screening is offered, it is often the wrong kind, she says. “To screen for lung cancer, doctors should order a low-dose screening CT scan, not a chest x-ray,” Felciano explains. She recommends screening for people age 55 or older who have smoked a pack or more a day for 30 years or more and are a current or former smoker. Those with a family history of lung cancer and exposure to asbestos, radon or other known carcinogens should also consider screening.
Day to day, Feliciano sees the struggles many of her patients face. This experience inspired her interest to find ways to provide better care to minorities and those with low income. She decided to look beyond therapies to basic needs that were not being met because of financial and other barriers.
“Income, education, age, insurance status and race all factor into this, plus trust in us and support at home. It’s all of these things combined that create disparities in care,” she says. Case in point, she says, is the 35 percent rise in lung cancer death rates among those with less than a high school education.
“All of these things make it less likely that a person will receive stage-appropriate therapy,” says Feliciano. “It wasn’t that I didn’t have a good drug for their cancer. It was patients saying they could not come to see me because they couldn’t pay their electric bill or they didn’t have a ride to the hospital.”
Her goals are to diagnose patients earlier and to work with social workers, patient navigators and other members of the patient and family services team to make sure patients can complete treatment.
“Having appropriate resources, like social workers and counselors, can make a huge impact for these patients, because it’s not just the cancer they’re dealing with. It’s many issues at home,” says Feliciano. “Lung cancer is really a disease that affects the whole family at many levels. There is a lot of room for improvement for resources to be directed to those who need them most.”
Another focus for Dr. Feliciano is the relative underrepresentation of African-Americans and other minorities in clinical trials of new — and possibly superior — treatments. She is working to identify more patients with lung cancer in Baltimore City and surrounding areas to make sure they are aware of clinical trials that may benefit them. For this, she is collaborating with Dina Lansey, M.S., R.N., who leads Kimmel Cancer Center efforts to increase minority participation in clinical trials. Lansey, assistant director for diversity and inclusion in clinical research, has successfully increased the number of minority patients treated in clinical trials through mandatory training and reporting for all clinical faculty and staff.
“I would get a patient with metastatic lung cancer who, without understanding the different types of lung cancer and treatments, wanted to give up, not even fight it,” says Feliciano. “There are things we can do for patients, but in their mind, all cancer is the same, and all treatment is the same. They don’t have hope. They believe it is over once you get it. They don’t want to get a biopsy because they fear surgery will make it worse. It’s so much information for patients, and if it doesn’t get explained in ways people can understand, that is a barrier to care. Sitting with patients, talking with them and having hard conversations is an equally important part of treatment.”
Lansey is putting this aspect of care for the underserved in a research framework. She matches minority and low-income patients to available clinical trials and uses a new database to track reasons patients decline to participate. On the patient side, she has developed several educational tools, including in-depth videos that explain clinical trials and provide patient testimonials. Feliciano is working with Lansey to identify lung cancer patients who are eligible for a clinical trial but didn’t enroll to identify socioeconomic and other demographic factors that may have impacted their decision. The data they collect will point to factors that predict for enrolling or not enrolling in clinical trials and guide the development of interventions when barriers to care are identified.
Working with Lansey, she is using the cancer registry to try to identify vulnerable patients who could easily fall through the cracks, linking the registry to the Kimmel Cancer Center’s outpatient database. This helps her follow up with inpatients to see if they return for outpatient appointments.
“Today, most cancer care is provided in the outpatient setting. This cross-referencing helps me see if there is discrepancy between who we diagnose with lung cancer and who we actually treat. We have to help transition patients from inpatient to outpatient care and make sure they return for their treatments,” says Feliciano.
She is also working with her research colleagues to explore disparities in cancer survival at the genetic level. She is studying interesting genes—the instruction manual within every cell that tells that cell how to behave—that might be associated with cigarette consumption and lung cancer. She is looking to genetic clues to help explain why women, stage for stage, do better than men. Lung cancer in nonsmokers and genetic alterations that are prevalent among specific ethnicities are other areas being studied.
Feliciano and Lansey also recognize there are things beyond the clinic and the laboratory that, on the surface, appear to be unrelated to cancer treatment, such as transportation, yet may carry life-or-death significance for people struggling financially and facing a cancer diagnosis. “After all, if patients can’t get a ride to a clinic or can’t afford parking fees, they can’t receive the treatment they need,” says Feliciano. She is working with Lansey to include her patients in a study to see if providing free transportation or parking has a positive impact on clinical trial participation. The program is currently available to patients who live in Baltimore City.
“The care can be very complicated. When patients are diagnosed with lung cancer, we want to make sure that all of their other needs can be met. That includes access to transportation, helping them back and forth to appointments, and making sure they can get the medication from the pharmacy. These interventions that seem simple can impact whether patients complete their treatment,” says Feliciano.
The cost of medication can be another major obstacle for patients. Drugs for metastatic lung cancer can add up to $150,000 or more a year, she says. Insurance coverage can significantly reduce that amount, but plans vary on how much they will pay for and how much patients must absorb. “Some oral drugs cost $8,000 to $15,000 a month. Think about people with Medicare who reach their donut hole, and paying for one month’s supply means an out-of-pocket cost of $900. Many people can’t afford this. If the copay is too high, patients won’t pick up the drug from the pharmacy, or they will ration it and take a half dose to make it last longer,” says Feliciano.
Many drug companies have programs to provide drugs to those who cannot afford hem, and Johns Hopkins has a patient assistance program that helps patients access these services and identifies other support when necessary (see Help For Low-Income and Uninsured Patients).
“It was very frustrating seeing patients who would choose not to get their nausea medications because they had to use that money to pay another bill,” says Feliciano. “It’s these kinds of barriers that really impact what patients can get care in the first place.”
Many patients worry about the lost wages from missed work for medical appointments, the economic toll of side effects like nausea and pain and additional medication to mitigate those, and the cost of coping with the ravages of the disease on other parts of the body, then tack on the cost of getting to the appointment or parking. “There are so many costs that providers are unaware of and don’t take into account. We want to better understand how financial burdens relate to getting care and outcomes,” Feliciano says.
She likes the team approach the Kimmel Cancer Center takes, involving nurses, social workers, navigators and other resources to assist patients.
“That’s what Johns Hopkins provides. This kind of directed collaboration and interest in helping improve cancer care for minorities and the underserved is not available everywhere,” she says. “We are mounting a great effort to identify barriers to care, and there is so much opportunity to implement the things we learn. Hopefully, we can expand this beyond our own patients to help patients at cancer centers across the country.”