Tamika Davis couldn't nap on her couch during cancer treatment. She remained afraid that one of her toddlers would walk up to her and pull out the needle that administered chemotherapy.
Friends and family watched her children when they could during her treatment for colon cancer last year. But Davis had gaps without help because she couldn't afford childcare and didn't know where to look for help.
“I didn't have the strength or energy to navigate these things on my own,” said the San Antonio, Texas, native.
Patients aren't getting enough help navigating a health care system that's becoming increasingly complex, researchers and other health care experts say. They say more common insurance complications, doctor and drug shortages and a lack of communication make life harder for people with serious or chronic illnesses.
“Just about anything you can think of is now basically harder to do,” says Elisabeth Schuler, founder and president of Patient Navigator, a company that helps people get through the system.
More and more health care providers and employers are offering counseling assistance, a practice of the federal Medicare program has started to cover. But that help has limits.
Patients with serious or chronic diseases face a web of challenges. They contain:
— Coordinate doctor appointments and tests, often while at work or during treatment.
— Dealing with denials of coverage or delays in care due to insurer prior approval.
– Figuring out how to fill a prescription if they can't get coverage or if their medication ends up on a growing list medicine shortage.
— Acting as an intermediary for doctors and specialists who do not talk to each other.
— Paying medical bills and getting help with rent or utilities. That help has become harder to find since the COVID-19 pandemic, said Beth Scott of the nonprofit Patient Advocate Foundation.
All of this can be exacerbated for patients who don't speak English or have no experience navigating the health care system, noted Gladys Arias, policy director at the American Cancer Society's Cancer Action Network.
Davis, the cancer survivor from San Antonio, said she was in the hospital when she asked for help finding community resources.
She said a case manager placed a book of available resources on her bedside table and did nothing else. Davis, a nursing professor, found the book confusing. The programs described therein had different qualifications based on things like income or diagnosis. The 44-year-old eventually lost her car and left her home after medical bills piled up.
“I feel like there was some kind of help available to me,” she said. “I just didn't know where to look.”
Ali DiGiacomo said she wishes she learned how to deal with insurance companies in college. She often has to do that while dealing with the side effects of rheumatoid arthritis treatments.
The 30-year-old personal trainer said she has tried for years to get a diagnosis for bouts of intense chest pain, which doctors believe are related to her condition. This requires imaging tests that insurers often refuse to cover.
“Dealing with them having brain fog and fatigue and pain is like the icing on the cake,” DiGiacomo said.
DiGiacomo said her form, or list of covered medications, has been changed three times. That may force her to look for a place where the newly covered drug is available, causing her to fall behind her medication schedule.
She estimates she talks to her insurer at least four times a month.
“I have to hype myself up,” she said. “Then you talk to a million different people. I wish I had just one person to help me deal with all of this.”
Delays in care due to prior approval by insurers are becoming more common, many experts say. More plans have also made it a challenge to get coverage outside their networks of doctors and hospitals.
A typical denial appeal can easily involve 20 to 30 phone calls between the patient, the insurer and the doctor's office, says Scott, director of case management for the Patient Advocate Foundation, which helps people with chronic or debilitating illnesses.
She said some patients give up.
“Sometimes you're sick and you don't want to fight it anymore,” she said.
Hospital case managers are often overworked, which limits the amount of help they can provide, noted Schuler, who became a patient advocate about 20 years ago after her two-year-old daughter underwent cancer treatment.
Overall, help for patients is “very patchy everywhere,” said researcher Michael Anne Kyle of Harvard Medical School.
“I think we need a lot of Band-Aids,” she said.
Many cancer centers offer patient navigators who can help coordinate appointments, get answers to coverage questions, find rides to the doctor and provide other support. Some insurers provide similar assistance.
And according to benefits consultant Mercer, more and more employers are offering navigation or advocacy help to people with their insurance plans.
But these services are still not widespread. Patients with Alzheimer's disease and their caregivers don't have consistent access to such help, said Sam Fazio, senior director at the nonprofit Alzheimer's Association.
“People have trouble finding their way,” he says.
Making the system better for patients will require major changes, said Dr. Victor Montori, a Mayo Clinic researcher who studies health care delivery.
He said the system should focus more on minimally disruptive medicine, making care fit into the patient's life. That means things like reducing unnecessary paperwork and surveys, making appointments more flexible and giving doctors more time.
He noted that the burden on patients is not just the time and effort they spend navigating the system. It's also what they give up to do that.
“If you waste people's time on foolish things, you are being unkind to (their) main goal, which is to live,” he said. “We must stop seeing the patient as a part-time employee of the health care system that we should not pay.”
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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute's Science and Educational Media Group. The AP is solely responsible for all content.
