Luna is beyond her three open heart surgeries that were required to correct her circulatory system. Surgeries that were vital for keeping her alive. The roller coaster of shuffling our lives in and out of hospitals, juggling work schedules, finding hotels, sedated catheters, and fighting for her synagis shots-making sure that the insurance will cover them every month (which they ultimately didn’t) is behind us.
The heavy-duty surgeries may be behind us now, but Luna’s diagnosis will always remain the same. DILV, DORV, Transformation of the Greater Arteries, Dextrocardia, Pulmonary Stenosis and Pulmonary Atresia-those will never change or go away. They represent structural abnormalities in the heart and arteries-unlike say, cancer, which thank goodness, can and does go away for good.
To bring you up to speed on our life, The Architect has been gainfully employed since December. Our family is off Healthy Kids and now on Tufts. New Insurance, new page. Or so I thought.
Tufts is a unique and not very prominent health insurer. Founded in Boston, it caters pretty much to the greater Boston area. And since we have a HMO, we need those annoying referrals. For everything.
The Architect also works in Boston, and we live just over the border in New Hampshire. You know when you hear Politians saying, “Let health consumers cross state lines! It’s a sure way to increase demand and thus competition”.
Um right. What they do not understand, or what they are forgetting, is the doctor-patient relationship. Shouldn’t that drive health care? Politians try to ‘business-ize” health insurance-though their logic is often skewed and the message is contradictory. Take Luna’s case. Sure, we can drive down to Boston. But we have a wonderful relationship with her cardiologist who practices in New Hampshire and Maine. Not only is it easier, and less expensive to cart my family out to the hospital in New Hampshire, but Luna knows the team. Keeping and maintaining the relationship with your medical team, and the consistency it provides, is paramount. And this is doubly so for children. A familiar face eases a child’s anxiety. Let’s face it. It sucks to have a child who has a life-long medical condition. But the suffering, branding, and flat out discrimination we face from our health insurers is inhumane. Bottom line: health insurance is great. If you are healthy.
Relieved that we no longer have Almighty Anthem, I thought we would be fine for our appointment today. Luna’s big, expensive stuff is behind us (for now…the future could bring, realistically, a change in her health (giant knock wood), and/or new technologies and surgeries that could help her live to her fullest.)
But for now she only needs annual cardiology appointments where she undergoes an EKG, pulse test, blood pressure check and a 60 minute echocardiogram. It’s an expensive visit, but it should only be annually.
The blow-back with Tufts started subtly. Her primary care physicians (who I adore, and who are so supportive with our trials with insurance), told me when I was getting her referral.
“We need to carefully describe her diagnosis”.
Another woman at the office, working on her paperwork explained, “Her diagnosis is too long.” The insurance needs to be able to fit it into their system.
I smiled stiffly; with two young kids attached to me I couldn’t get into questions.
I later found out that Luna’s diagnosis could be considered “too long” making referrals anywhere from difficult to impossible.
I held my breath and marched myself, Luna and her sister out to her cardiologist. Assuming the referral went through OK, I arrived to the front desk only to learn the entire hospital does not accept our insurance.
There would be no appointment for Luna. In the end it had nothing to do with Luna’s referral, and the potentiality that it would be “too long”. The entire hospital in New Hampshire simply does not contract with Tufts. We’ll try this again next month in Maine.
Luna being Luna in this photo. Her sense of humor and wit always gives me a lift. Though it was a cloudy day, Luna insisted on donning a pair of Dora sunglasses on her head for our four hour excursion for her (non)visit. Her cardiologist came out to the lobby and asked to see Luna's glasses. (Doctors are sneaky like that...really Dr. G just wanted to check her lip and complexion color). Later that night Luna asked me this, "Mom, did we drive all the way to the doctors just so she could look at my glasses?"