Washington DC: Tamika Davis couldn’t sit on her couch during her cancer treatment. She was always afraid that one of her children might come and take out the chemotherapy needle.

Friends and family cared for her children whenever possible during her colon cancer treatment last year. But Davis received no help because she couldn’t afford child care and didn’t know where to turn for assistance.

“I just didn’t have the strength or the energy to try and deal with these things,” the San Antonio, Texas, native said.

“Basically anything you can think of is harder to do now,” said Elizabeth Schuler, founder and president. Patient Navigator, a business that helps people get through the system.

Most care providers and employers are offering help to navigate people, and the federal Medicare program has stepped in. But that support has its limits.

Serious or serious illness There are a slew of challenges. These include:

– Coordination Doctor’s appointments and testing, often while at work or during treatment.

– dealing with Denial of coverage Or Delaying care Due to the insurer’s pre-approval requirements.

– If they can’t find coverage or their list of out-of-print medications grows, they must figure out how to get their prescription filled.

– Acting as a mediator between doctors and specialists who do not talk to each other.

– Payment medical bill and getting help with rent or utilities. That help has become harder to find since the COVID-19 pandemic, according to Beth Scott of the nonprofit Patient Advocate Foundation.

All of this can be even more difficult for patients who do not speak English or have no experience working in this field. health care systemsaid Gladys Arias, policy chief 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 put a book of available resources on her bedside table and did nothing more. Davis, a nursing professor, found the book confusing. The programs it described had different eligibility based on things like income or diagnosis. Davis, 44, lost her car and left her home after care bills piled up.

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

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

The 30-year-old personal trainer said she has spent years trying to get a diagnosis for the intense chest pain she experiences, which doctors believe may be linked to her condition. That requires imaging tests, which insurers often refuse to cover.

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

DiGiacomo said his formulary, or list of covered drugs, has changed three times. That can cause him to have to look for a place that carries the new covered drug, which can delay his medication schedule.

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

“I have to keep myself motivated,” she said. “Then you talk to a million different people. I wish I had just one person to help me get through all of this.”

Many experts say delays in care have become common because of insurer pre-approval requirements. More plans have also made it challenging to obtain coverage outside their networks of doctors and hospitals.

A typical appeal of 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 for the Patient Advocate Foundation, which helps people with long-term or debilitating illnesses.

Some patients give up, he said.

“Sometimes you’re sick and you don’t want to fight it,” he said.

Schuler said case managers in hospitals are often overworked, which limits how much help they can provide. Schuler became a patient advocate nearly 20 years ago after her 2-year-old daughter went through cancer treatment.

Overall, support for patients is “poor pretty much everywhere,” according to Harvard Medical School researcher Michael N. Kyle.

“I think we have a lot of Band-Aids that are necessary,” he said.

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

More employers are offering guidance or advocacy help for people under their insurance plans, according to benefits consultancy Mercer.

But these services are still not widespread. Alzheimer’s disease patients 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 trouble finding their way,” he said.

Dr. Victor Montori, a Mayo Clinic researcher who studies care delivery, said major changes are needed to make the system better for patients.

He said the system should focus more on the least disruptive therapies possible, making care more compatible with patients’ lives. That means cutting down on unnecessary paperwork and surveys, making appointments more flexible and giving patients more time with doctors.

He said the burden on patients is not just the time and effort they spend dealing with the system, but also what they have to sacrifice.

“If you waste people’s time on useless things, you’re being unkind to (their) main purpose, which is to live,” he said. “We need to stop thinking of patients as part-time employees of the healthcare system who we don’t pay a salary to.”

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.