How to Understand Health Insurance

Childhood cancer survivors like Martin Ribulotta, age 31, have more medical appointments than most people his age. They also deal with health insurance matters more often. 

Ribulotta was diagnosed with astrocytoma, a brain tumor, as an infant. He had surgery and chemotherapy at Children’s National Hospital in Washington, D.C. The cancer came back twice and was treated with surgery. Ribulotta has not had cancer since 2001. 

But more than 20 years later, Ribulotta has health problems from his cancer treatment. The right side of his body is weaker than the left side. His right leg is slightly shorter than his left. Chemotherapy drugs have caused dental problems. 

Fortunately, he has health insurance through his work. His mother’s insurance also covers him because of his disability.  

While he is glad to have health insurance, Ribulotta says dealing with health insurance companies can be confusing and complicated. 

“It can be overwhelming to deal with health insurance, especially as a childhood cancer survivor with all the follow-ups and tests we need done,” Ribulotta says.

Insurance stress may affect your health

Childhood cancer survivors, like many other people in the United States, find health insurance stressful, says Elyse R. Park, PhD, MPH. She directs the Health Promotion and Resiliency Intervention Research Center at Mass General/Harvard Medical School. She studies health insurance coverage for childhood cancer survivors. 

Park says that not understanding health insurance terms and coverage keeps people from making informed decisions about health care. The problem is called low health insurance literacy. Studies have shown that low health insurance literacy can cause people to skip the care they need or have stress about the costs of care.

Park and her team are creating a program to help childhood cancer survivors increase their knowledge of health insurance. 

“Health insurance makes people worry,” Park says. “People avoid thinking about it. We’ve shown that once you have the information, you have the power to make decisions.” 

How to pick the best health insurance plan

Choosing a health insurance plan can be confusing, says Monica Fawzy Bryant, a cancer rights attorney and chief operating officer for Triage Cancer. Triage Cancer offers free legal and practical education for patients, survivors, and caregivers. 

“There should be a class in high school on health insurance and finances,” Bryant says. “These are concerns that we all must navigate but are rarely taught.”

Determine a plan’s total cost

Look at the total cost and what is covered when picking a health insurance plan, Bryant says.

The total cost of health insurance is more than your monthly premium, which is a fee you pay each month for insurance. Total yearly costs include:

• Monthly premium x 12
• Deductible: What you must spend for health care before insurance pays for anything (except free preventive services) 
• Copayments: A fixed cost you pay each time you get care (such as $25 per office visit)
• Coinsurance: The portion you pay for covered services (such as 30% of hospital charges)
• Out-of-pocket maximum: The most you will spend for covered services in a year. After that, insurance pays 100% for covered services. Out-of-pocket expenses may include deductibles, coinsurance, copayments, and services that are not covered. But every insurance plan is different.
• Do the math: Add these items together.  

Choose a policy

Then decide which policy includes the doctors and care you need. Think about these things:

• Medical care needs: Make a list of the health care visits, therapy, supplies, and drugs you may need.
• Estimate what you will use: Think about a worst-case scenario. Talk to your primary care provider or your survivorship care team.
• What is covered by the plan: Look closely at details of the policy. You can check the insurance plan’s provider directory on its website. Then you can call the insurance plan’s customer service number listed on their website. Find answers to the following questions:
  • Are my providers, labs, and hospitals in the plan’s network (in-network)? Check the insurance plan’s provider directory on its website.
  • Will I have to change providers or pay the higher cost of out-of-network providers? 
  • Are my prescriptions covered and at what rate? 

“The best plan for you depends on your situation,” Bryant says. “Generally, people with a cancer history want to be as protected as possible.” 

Appeal if coverage is denied

Learn what your plan covers. If your insurance denies your claim, you can ask them to reconsider. This is called an appeal. You have at least 2 chances to challenge the insurance company. 

• Internal appeal: Ask the company to reconsider.
• External appeal: An outside organization decides if the insurance company should cover the service.

“In one year, there were 48 million denials for plans sold in the Marketplace, and 99.9% were not appealed,” Bryant says. “However, when appealed, between 40–60% of external appeals are decided in favor of the patient.”

For more information on health insurance, visit the Paying for Medical Care section of the Together by St. Jude™ online resource. You can also visit the Triage Cancer website for additional information. They have a program where you can schedule a call for one-on-one help.