Being a patient is increasingly difficult in a strained and complex US healthcare system

Tamika Davis couldn’t nap on the couch during cancer treatment. She was worried that one of her children would appear and pull out the needle to administer chemotherapy.

Friends and family cared for her children when they could during her treatment last year for colon cancer. But Davis had gaps without help because she didn’t have money to care for her children and didn’t know where to look for assistance.

“I didn’t have the strength or energy to try to navigate these things on my own,” said the San Antonio, Texas, resident.

Patients are not getting enough help to navigate a health care system that is becoming increasingly complex, according to researchers and other care delivery experts. They say more frequent insurance complications, shortages of doctors and medicines and lack of communication make life more difficult for people with serious or chronic illnesses.

“Almost everything you can imagine now is harder to do, basically,” said Elisabeth Schuler, founder and president of Patient Navigator, a company that helps people navigate the system.

More caregivers and employers are offering help to guide people, a practice of the federal Medicare program started to cover. But this assistance has limits.

Patients with serious or chronic illnesses face a host of challenges. They include:

— Coordinate medical appointments and exams, often during work or during treatment.

— Handle denials of coverage or delays in service due to insurer pre-approval requirements.

— Find out how to get a prescription if they can’t get coverage or if their medications appear on a growing list of missing drugs.

— Act as an intermediary between doctors and specialists who do not talk to each other.

– Paying medical bills and get help with rent or utilities. Such assistance has been harder to find since the COVID-19 pandemic, according to Beth Scott of the nonprofit Patient Advocate Foundation.

All of this can be compounded for patients who don’t speak English or have no experience navigating the healthcare system, noted Gladys Arias, policy director for the American Cancer Society Cancer Action Network.

Davis, the cancer patient 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 professor of nursing, found the book confusing. The detailed programs had different qualifications based on factors such as income or diagnosis. The 44-year-old woman ended up losing her car and leaving her home after her healthcare bills piled up.

“I feel like there was some kind of help for me,” she said. “I just didn’t know where to look.”

Ali DiGiacomo said she wishes she had learned how to deal with insurance companies in college. She often has to do this while dealing with the side effects of rheumatoid arthritis treatments.

The 30-year-old personal trainer said she spent years trying to get a diagnosis for bouts of severe chest pain that doctors think may be linked to her condition. This requires imaging tests that insurance companies often refuse to cover.

“Dealing with them having brain fog, fatigue and pain is like icing on the cake,” DiGiacomo said.

DiGiacomo said its formulary, or list of covered medications, has changed three times. This may force her to look for a place that sells the newly covered medication, which puts her behind on her medication schedule.

She estimates that she talks to her insurance company at least four times a month.

“I have to cheer myself up,” she said. “So 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 insurer pre-approval requirements have become more common, many experts say. More plans have also made it harder to get coverage outside their networks of doctors and hospitals.

A typical appeal for a denial can easily involve 20 to 30 phone calls between the patient, the insurer and the doctor’s office, said Scott, director of case management at the Patient Advocate Foundation, which helps people with chronic or debilitating illnesses.

She said some patients give up.

“Sometimes you get sick and you don’t want to fight it anymore,” she said.

Case managers in hospitals are often overwhelmed, which limits the amount of help they can provide, noted Schuler, who became a patient advocate about 20 years ago after her 2-year-old daughter underwent treatment for the disease. cancer.

Overall, help for patients is “very patchy everywhere,” according to Harvard Medical School researcher Michael Anne Kyle.

“I think we have a lot of needed Band-Aids,” she said.

Many cancer centers offer patient navigators who can help coordinate appointments, get answers to questions about coverage, find rides to the doctor, and provide other support. Some insurers provide similar assistance.

And more employers are offering navigational help or advocacy for people on their insurance plans, according to benefits consultant Mercer.

But these services are not yet widespread. Patients with Alzheimer’s disease and their caregivers don’t have consistent access to such help, said Sam Fazio, senior director of the nonprofit Alzheimer’s Association.

“People are having a hard time finding their way,” he said.

Making the system better for patients requires big changes, said Dr. Victor Montori, a Mayo Clinic researcher who studies care delivery.

He said the system should focus more on minimally disruptive medicine that makes care fit into patients’ lives. This means things like cutting out unnecessary paperwork and research, making appointments more flexible, and giving patients more time with doctors.

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 it.

“If you waste people’s time on silly things, you are being cruel to (their) main purpose, which is to live,” he said. “We have to stop thinking of the patient as a part-time employee of the healthcare system that we cannot afford.”

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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. AP is solely responsible for all content.