Patient-centered Care

I have a very finicky immune system. It has trouble distinguishing foreign invaders (like viruses) from my body’s own healthy tissues. It often goes on the warpath, misguidedly fighting healthy parts of my body. This happened recently and resulted in a somewhat frantic call from my doctor after she received the results of lab work that had been done the day before. I knew I had been feeling tired more often and that most afternoons had been spent napping on the couch but, honestly, when you live with lupus, this is often the norm. Still, this time many of my blood counts had dropped to dangerously low levels. It appeared that my poor little immune system was going to need a boost and the sooner the better! After living with lupus for nearly my entire adult life, I accept the fact that my body sometimes needs medical intervention to stay well. What frustrates me is what happened next in this story.

In spite of my white cell count being extremely low and putting me at risk for infection; in spite of my well-documented history of life threatening infections; and in spite of the fact that, historically, the only medication which has effectively restored my immune system is intravenous gamma globulin…my insurance company denied my doctor’s request for treatment. According to the insurance company, the request was denied because I do not have primary immune deficiency (meaning I was not born with a deficient immune system). Rather, I have secondary immune deficiency caused by lupus. Now, mind you, for the immune deficient patient the results are the same whether the diagnosis is primary or secondary. Left untreated, I would walk around incredibly vulnerable to infections that I would not be able to fight off. With no other viable option, I needed IV gamma globulin. Unfortunately, in a call with my doctor, the woman from the insurance company explained that Primary Immune Deficiency is the only diagnosis that could receive approval. Not being able to check that box on her form automatically meant my claim would be denied and since I have secondary immune deficiency that’s precisely what happened. This began a phonathon as my doctors and nurses worked with me to get the necessary insurance approval because, in spite of the denial, obtaining the IV gamma globulin was a medical necessity in order to keep me healthy. This medication is extremely expensive (meaning thousands of dollars) if I have to pay for it myself. After three long weeks of endless hours on phone and my doctor explaining to doctors at the insurance company the need, it was finally approved.

I am very thankful to my healthcare providers as they are willing to put in the time and effort involved in getting the medication I need approved, but it leaves me questioning who gets to make the decisions in medicine today: the doctors with their patients or the insurance companies? Over the years I’ve heard from many patients who report negative experiences when trying to get medications and procedures approved. I do understand that sometimes there are specific steps that need to be taken and possibly less expensive ways to get good results. For instance, my husband hurt his knee and he was able to rehabilitate it through physical therapy and avoid costly surgery, but that is not always the case. There is no rehabilitating my immune system through less costly physical therapy (I wish!), or any other method.

RELATED: Me, I’m the Patient in Patient-Centered Care

The power insurance companies wield today over patients and the medical community is a huge problem. Patients like me who live with chronic illness every day are frustrated by this and often have no options. We spend hours of time trying to get medications and procedures approved when we often simply do not have the energy to fight. What precious little energy I have, I do not want to use fighting for a treatment my doctor prescribes as medically necessary.

I do not know what the answer is to the problems we face in healthcare today and I hope that there are people far wiser than me who are working on it—but I do know this: The answer is not simply to provide every citizen insurance coverage, because that coverage doesn’t guarantee that patients will receive the care they need or be able to pay the astronomical deductibles required. We must look deeply into these systems and find out how we can put the treatment decisions back in the hands of the doctors and patients. Patient-centered care will only work when we move from the insurance-centered care we have today.

About Cindy Coney: Ambassador of hope and author of The Wild Woman’s Guide to Living with Chronic Illness, Cindy Coney is a nationally acclaimed speaker, trainer, human resilience expert, and philanthropic force. Dedicated to helping both children and adults achieve optimal health and success, Cindy has taught thousands of people to move beyond coping with limitations to recapturing joy and fulfillment in their lives.

Diagnosed with lupus in 1980, Cindy has since driven a race car 124 miles per hour; completed the Chicago Marathon; championed countless nonprofit organizations; presented to the World Lupus Congress as a keynote speaker; and shared her inspiring, empowering story from Belize to Baltimore.

Follow Cindy’s Blog at www.cindyconey.com