The Business Of Cancer

One of the ugly little facts that we weren’t told on “D-day” was that we didn’t just get cancer, we got a new family business. A typical cancer patient’s treatment can easily cost $100,000 a year or more. Even for those of us with great insurance, the cost of co-pays, co-insurance and deductibles can run into thousands of dollars. So in addition to dealing with treatments, side effects and emotional trauma, patients and their families find themselves running a major business.

I am one of those with great insurance, thanks to my employers. Even though our out-of-pocket expenses are manageable, the “cash flow” of my 12-year battle is approaching $2 million. My wife and I have found that for long periods, often coinciding with the worst times of my disease, one of us needs to spend at least an hour a day, five days a week, working on our undesired business.

Here are a few of the time bandits we deal with:

• Medical bills
• Explanation of Benefits
• Appointment schedules
• Lab results
• Prescriptions
• Disability forms
• Flexible Spending filings
• Credit card statements
• Tollway statements
• Grant applications
• Taxes
• Hotel reservations

At least 20 percent of the time, each of these items will be messed up. Just coordinating a simple error between a doctor’s billing company and your insurance company requires at least three phone calls and 10-15 minutes on hold. Usually, follow up is needed to make sure things get sorted out. And, while it’s frustrating, I have to remind myself that spending an hour on the phone to turn a $1,000 patient “responsibility” into a $35 co-pay is well worth the time spent.

Whether you are the patient, or the caregiver, sorting through the business of cancer is a monumental task. Like it or not, you will become an expert in subjects you never dreamed you’d need to know. It requires quite a balance of persistence, people skills, time management and understanding the processes to resolve the myriad of complex issues that define our current health care system.

Here’s a few tips we’ve noted along the way, many learned through the school of hard knocks

• Keep a business journal or notebook. Each time you run across an issue, start a new page. Take careful notes of what the problem is, who you called, the name or agent # of the person you spoke to, the phone number you called, including extension numbers, the specific jargon used by the person on the other end of the call or visit, and what follow up they promise, along with what your next step is.
• Each time you call an 1-800-electronic operator, jot down the numbers you press to get to a human. (As a sort of grim amusement, for the voice activated operators, I randomly shout “human!”, “agent!”, “customer service!” and “operator!” Occasionally this will bypass much of the button pushing. At a minimum, it’s a stress reliever!)
• When you finally get to a human, and they turn out to be the one that can help you, ask their name and how you can call back directly to them. Much time is wasted doing follow ups, going through electronic operators, holds, re-explaining the problem while the new agent reads the notes entered previously and re-starting the investigations.
• Remember the person on the other end is doing a job, and they aren’t on a personal vendetta to make your life difficult. They probably aren’t paid much, field dozens of calls from sick or irate people and have little control over your case. I find making a person connection with them, early in the call, can work wonders. “How’s the weather where you are?” “Hope you’re having a good Monday,” or “How long since your computer last crashed?” are easy, friendly conversation starters.
• If you don’t get the answer you like, or if it doesn’t make sense, or the resolution doesn’t exactly match the terms in your insurance policy, politely ask to speak to a supervisor. Make sure to let the person know you aren’t unhappy with them, but would like to elevate the issue. Let the supervisor know the original agent was helpful, but you feel that there might be a problem outside their control. If the supervisor can’t help, ask how to file a formal request for review.
• Ask for help. Your oncologist or hospital usually has a patient advocate. Many local support groups or chapters of national agencies have people who will assist you in sorting out the snarls and requesting help on co-pays and prescription costs.
• For money you truly owe, never hesitate to ask for a payment program instead of feeling that you have to pay the entire bill at once.
• If you do your taxes with chemobrain, you may find that Uncle Sam doesn’t appreciate your math!

You and your caregiver are going to spend a lot of time together doing paperwork. It’s one more stressor on top of all the other things you are going through. We hope the above tips might ease your burden a little bit.

Besides the other wonderful blogs on Cure Today’s site, I hope you'll also visit my Taking Vienna site. That’s where I talk in a much more personal way about my battle, my family and friends, and other random and odd musings.