Insurance Is All About the Details When You Have Bladder Cancer

It’s the boring details that most of us don’t think much about when life is good. But anyone who has been through a cancer diagnosis knows that those insurance details become crucial. (This, of course, assumes you are lucky enough to have insurance.) The specifics of your plan determine which doctors you can see and which treatments you can receive.

The insurance roulette

The challenge in choosing a plan and in choosing doctors is that we don’t know what our problems will be. Most likely you weren’t thinking about the best bladder cancer specialists in your area when you chose your plan (assuming it was before you were diagnosed).

Whether your insurance is through an employer, through Medicare, or through an Affordable Care Act exchange or Medicaid program, understanding the details of your coverage can help you make decisions. Gaining an understanding isn't necessarily easy. But it’s worth trying. This article will address issues (with regard to doctors) that my husband and I encountered with private insurance when he had bladder cancer. Part Two will address Medicare and other issues.

Our employer-based coverage had several options

When my husband was diagnosed with bladder cancer, our coverage was through an employer-based plan. The employer offered options for an HMO, a PPO, or a POS (point-of-service) plan. We were in the HMO. It had the least expensive premiums and well-defined limits on the out-of-pocket costs. This was great. Until it wasn’t.

We each chose a primary care doctor. Based on that choice, we could see specialists in the medical group affiliated with that doctor. It was a large group. But it didn’t include a specialty NCI hospital where he wanted to go.

We could only change plans once a year

I learned that we were allowed to change plans only during open enrollment. Certain “life events” triggered the opportunity to make changes but being diagnosed with a serious illness was not considered one of them.

But we found a workaround

I stumbled upon a workaround to our problem. I learned that we had the right to change our primary care doctor as often as once a month. By changing the primary doctor, we were then allowed to go to the specialists in the new doctor’s medical group.

My husband liked his primary care doctor. But when you are deep in the trenches of metastatic bladder cancer, you’re not spending a lot of time with your primary care doctor. We ended up switching his primary care doctor three times within a year so that we could go different specialists and have them considered “in-network.”

I met with a representative of the plan and told him that we did this. He chuckled and said that many people choose a more expensive point-of-service plan not realizing they could simply switch doctors within the HMO plan for more choice.

I found it disconcerting that he viewed this as a “trick” that many patients and families didn’t know about. We could have easily been paying much higher premiums for a number of years in that more expensive plan, thinking that was the only way to access a wide range of doctors.

Does your plan let you see the best specialists in your region?

Ideally, your plan will allow you – as a bladder cancer patient – to go to one or more of the NCI-designated facilities in your region. These facilities typically have a urologic oncology department that includes specialists who see and treat a lot of bladder cancer. Community doctors can be great but many urologists treat far more prostate cancer than bladder cancer. I urge all patients to at least get a second opinion from an NCI facility.

Doctors are only one part of your treatment but having as many options and the options you want is crucial. Do all you can to understand your options.