03/07/2013 06:19 pm ET Updated May 07, 2013

Navigating the World of Health Insurance: A Checklist

Last year, when I attended the OMG 2012 Stupid Cancer conference, I was surprised to hear all of the confusion surrounding health insurance. I personally had struggled with having my treatments and medications approved. I even had a book coming out on the subject entitled The Malformation of Health Care. However, until that conference, I never personally met anyone else struggling in the same way.

I think what happens is we all go through difficulties, and once we're through them we think, "thank goodness that's over." We try to forget the frustrations rather than use what we've learned to help the next person going through a similar process. It is not that we are selfish. It is just that we are exhausted.

Battling huge insurance corporations who do not want to pay for that $8,000 a month chemotherapy drug you need to survive, while you are also battling cancer, is tremendously taxing. There are even people who, while you are battling your insurance company, insist you must be doing something wrong because they have never experienced a problem with their own health insurance. You are not doing anything wrong, and you are not trying to "get away" with anything fraudulent.

The truth is, not all insurance is created equal. Your policy may offer fantastic coverage for basic trips to the doctor, and terrible catastrophic coverage. The company you work for may have switched which insurance plan they previously offered, just in time for you to receive your diagnosis. Maybe you haven't been able to snag that dream job yet, and you don't even have basic health coverage. Your plan was to not get sick. You are certainly not alone.

While I can not address every situation for every person, I can at least offer some primary information on working with whatever health insurance you do have. These are a few very basic tips I learned through my own struggles with illness and insurance. I hope they are helpful to you.

Checklist for Health Care Rights and Service

  • Know your benefits: Get a printout from your insurer and know your deductible and out-of- pocket maximum. This way, you can track what you are responsible for. Be an educated consumer.
  • Ask for a case manager: This is a contact person within your insurance company who will know your case and be of real benefit to you if it is a complicated one. If your insurance company says you can't have a case manager, keep asking. Once they see all the claims coming in, most likely the company will change its mind.
  • Keep all of your insurance claims and bills/booklets, which you can usually do online. Keeping hard copies is probably a good idea, just in case your computer or backup drive dies.
  • Appoint an organized family member/friend to help you with all of this because it can be overwhelming␣especially when you're sick.
  • Reach out to a hospital social worker or to local nonprofit organizations (such as the Cancer Legal Resource Center, the Leukemia & Lymphoma Society, etc.) for ongoing help or support. They will know of good resources to help you if you're in trouble and can save you a lot of legwork.
  • Write down the name of anyone you speak with at your insurance company every time you contact your provider or your provider contacts you. Make sure you record the full name, date, and a detailed synopsis of the conversation.
  • Follow up! If you are denied coverage, do not be afraid to appeal. Jump through all the hoops the insurance company asks of you, and document everything. If, at the end of the appeals process, you need an attorney, you will have something to give him or her.
  • Learn all you can about your condition. A lot of times, insurance company workers know little about your condition.
  • Check with your insurance company about its fertility policies. I include this advice because many young adults are diagnosed with serious illnesses that may require heavy medications and treatments. At the point of diagnosis, someone who is in their late teens may not be thinking about future plans for a family.
  • Have a relationship of open communication with your doctors, who can help to advocate for you. Know that there is creative coding for blood tests and other procedures you may require to facilitate your health. A test that might not be covered if coded in one particular way may pass muster with your insurance company if coded in another way.
  • Know your out-of-network benefits. Sometimes you may be referred to specialists who may not be in your insurance company's network␣ What is the percentage and how does your out-of- network benefit work with your deductible? Do any of the company's in -network doctors offer the same care as the out-of-network specialist to whom you have been referred? If not, most policies have provisions to cover out-of-network providers when no in-network doctor has the same capability.
  • Try to connect all of your doctors, so that each knows about your health in relation to the other physicians providing your care. If you can start a group dialogue among your doctors, your care will be better.