Tamika Davis couldn’t nap on the couch during her cancer treatment because she was constantly worried her young children would come over and pull out the chemotherapy needles.
Last year, while she was undergoing treatment for colon cancer, Davis relied on friends and family to look after her children as much as possible, but there were times when Davis couldn’t get help because she couldn’t afford child care costs and didn’t know where to turn for help.
“I didn’t have the strength or energy to try to solve these problems on my own,” the San Antonio, Texas, resident said.
Researchers and health care delivery experts say patients aren’t getting enough help navigating an increasingly complex health care system. Growing insurance complexity, doctor and drug shortages and a lack of communication are making life harder for people with serious or chronic illnesses, they say.
“Basically just about everything you can think of is harder to get done right now,” said Elisabeth Schuler, founder and president of Patient Navigator, a company that helps people navigate the health care system.
More care providers and employers are offering help guiding people through the practice, which is part of the federal Medicare program. I started coveringHowever, there are limits to this support.
Patients living with serious or chronic illnesses face many challenges, including:
— Often coordinating doctor visits and test appointments while working or receiving medical treatment.
— Addressing denials of coverage and delays in treatment due to insurance company prior authorization requirements.
— Figure out how to get your prescription filled if your insurance doesn’t cover it or if the medication is covered by a prescription. Medicine shortages.
— Acting as a bridge between doctors and specialists who don’t speak to each other.
— Paying medical expenses Getting help paying rent or utility bills is also difficult, and Beth Scott of the nonprofit Patient Advocacy Foundation said that assistance has become harder to find since the COVID-19 pandemic.
The situation can be even more complicated for patients who don’t speak English or who don’t have experience navigating the health care system, said Gladys Elias, policy director for the American Cancer Society’s Cancer Control Network.
Davis, a cancer patient from San Antonio, said she was at the hospital when she asked for help finding local resources.
Davis said her care manager just placed a book on her bedside table outlining available resources and did nothing else. Davis, the nursing professor, found the book confusing. The programs detailed in the book varied in eligibility based on income, diagnosis and more. Davis, 44, ended up losing her car and leaving her home after the costs of care mounted.
“I felt like there was some resource out there that could help me,” she said, “I just didn’t know where to turn.”
Ali DiGiacomo said she wishes she had learned how to negotiate with insurance companies in college, because she often has to do so while dealing with side effects from her rheumatoid arthritis treatment.
The 30-year-old personal trainer had been seeking a diagnosis for years for bouts of severe chest pain that doctors believe are related to her illness, which requires imaging tests that insurance companies often deny.
“Dealing with them while feeling dizzy, fatigued and in pain is just the best thing,” DiGiacomo said.
DiGiacomo said her prescription drug list, or the list of drugs covered by her insurance, has changed three times, forcing her to search for a pharmacy that carries the newly covered drugs and delaying her medication schedule.
She figures she speaks to insurance companies at least four times a month.
“I need to motivate myself,” she said, “and I’m talking to millions of people. I just wish there was one person who could help me deal with all this.”
Many experts say delays in treatment due to insurance company prior authorization requirements are becoming more common, and a proliferation of insurance plans is making it harder to get coverage for out-of-network doctors and hospitals.
Scott, director of case management for the Patient Advocacy Foundation, which helps people with chronic and debilitating diseases, said a typical appeal of a denial of insurance coverage can easily require 20 to 30 phone calls between the patient, the insurance company and the doctor’s office.
Some patients give up, she said.
“Sometimes you get sick and you think you don’t want to fight it anymore,” she says.
Hospital case managers are often overworked and limited in the help they can offer, said Schuler, who became a patient advocate about 20 years ago after his 2-year-old daughter was treated for cancer.
Overall, support for patients is “grossly inadequate everywhere,” said Michael Ann Kyle, a researcher at Harvard Medical School.
“I think there’s a lot of first aid that’s needed,” she said.
Many cancer centers offer patient navigators who can help schedule appointments, answer insurance questions, provide transportation to doctors’ appointments, and provide other assistance. Some insurance companies offer Providing similar assistance.
Mercer, the employee benefits consultant, said more employers are offering navigation and assistance to people enrolled in insurance plans.
But these services are still not widespread, and people with Alzheimer’s and their caregivers don’t have consistent access to them, said Sam Fazio, a senior director at the nonprofit Alzheimer’s Association.
“People are having a hard time finding their way,” he said.
Big changes are needed to create a better system for patients, said Dr. Victor Montoli, a Mayo Clinic researcher who studies health care delivery.
He said the health system should place more emphasis on providing minimally disruptive care that is in line with patients’ lives — cutting down on unnecessary paperwork and investigations, making appointments more flexible and giving patients more time to spend with their doctors.
He noted that the burden on patients isn’t just the time and effort it takes to navigate the system, but also what they have to sacrifice to do so.
“Wasting people’s time on frivolous matters works against their primary purpose in life,” he said. “We need to stop thinking of patients as part-time employees of a health care system that we can’t pay.”
___
The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science Education Media Group. The AP is solely responsible for all content.
