Working with insurance to support your child's microtia health needs is not for the faint-at-heart...
INSURANCE COMPANIES AND BAHAs
The hoops that insurance companies make you jump through in order to get BAHAs for children with microtia is criminal! They often have contradicting language in their policies, saying that they pay for durable medical equipment but not hearing aids. A hearing aid is a durable medical device! Furthermore, it's critical to speech development for children to be able to hear! In the time that insurance companies make you jump through thousands of hoops, your child may have lost out on that critical developmental period when they should be hearing and learning to speak!
After months of work and lots of personal time and effort (and hand-crafted correspondence) on the part of caring ENTs, we were eventually able to get our insurance company (Pacificare at the time / Brown & Toland in San Francisco) to approve coverage for a BAHA for Ben - but it took months. Part of the correspondence was from a letter originally drafted by Dr. Roberson. The language in the letter includes: "In order to maximize speech development and auditory function, a bone conduction hearing device is medically indicated and recommended. At this age, the most effective device is a BAHA softband. Inattention to maximizing auditory function may result in irreversible and permanent functional deficiencies. The BAHA softband is not a hearing aid but an auditory prosthetic device in the same FDA category as cochelar implants and should be covered as such."
I think I mentioned this elsewhere, but when you first get a BAHA, there may be a 1-year warranty. You should also independently purchase insurance (after one year has expired) from a third party. We use Ear Service Corporation (ESCO).
2015 UPDATE: Our insurance for the BAHA, ESCO, indicated that they no longer insure BAHAs. We still have Ben's BAHA from years ago, and it still works fine. (The band is really stretched out, but that's OK.)
INSURANCE COVERAGE AND AUDIOLOGISTS
Every visit to an audiologist, which should be done on a regular basis (e.g., at least once every other month when the children are 0 - 3 years old) requires a referral from the primary care doctor if you are using an HMO. This can be a real hassle, especially since most pediatricians don't understand why it's important for very young children with atresia to get regular hearing tests.
When we lived in San Francisco, this was fairly easy. Once we received the initial referral, we received a blanket approval from Brown & Toland for audiological exams at the Hearing and Speech Center of Northern California which was in network.
However, we found it much more difficult in Los Angeles to find audiologists who were "in network" who could take an accurate hearing test of an infant, toddler or young child. Our HMO in Los Angeles (I think it was Blue Cross / Cedars Sinai and Associates at the time) only approved us for an "in network" audiologist near Palm Springs (over an hours drive each direction with no traffic- and it turned out that they would not be able to accommodate a two-year old anyway). We live in the middle of Los Angeles where there are literally hundreds of audiologists. I can only imagine how difficult it would be in locations with fewer audiologists. I had to talk with our insurance company (I think it was Cedars Sinai Associates through Blue Cross HMO) over months to request special dispensation for going to one of the audiologists in LA that can take children. Our pediatrician had to send special notes also. After these notes were sent and there were multiple phone calls, we eventually were approved to see Sol Marghzar "The Hearing Doctor" in Culver City, and we've liked him a lot because both he and Dr. Avila have a very kind and gentle manner with children. At the recommendation of a senior audiologist at LAUSD, we also went to Gregory Frazer with Pacific Specialists, on Wilshire by the 405, and he was also very good. Because Dr. Frazer is associated with our PPO plan, I am likely to switch to him - plus - he's a really nice person.
INSURANCE COMPANIES AND OBTAINING APPROVAL FOR A LOW DOSE CAT SCAN
It's hard to believe it now, but as I look back at emails from the period, I spent one year and seven months trying to get my insurance to cover the cost of a low dose CAT scan, even though research indicates that conventional CAT scans emit unnecessarily high amounts of radiation on children. (See tab called, "CAT Scan.")
When I called the California Ear Institute (CEI) to inquire about the annual conference, Sheri Bryne (who is a wonderful resource for microtia but who no longer works at the CEI :( informed me that Dr. Joseph Roberson's office had a special low dose radiation CAT scan machine made by Xoran that generates more accurate CAT scans with 1/10 the level of radiation. We proceeded to get a hand-written note from Dr. Lewin and my pediatrician, Dr. Keene to my insurance company, about the need for the low dosage CAT scan - and specifically indicated that a Xoran low dose machine, such as the one at Dr. Roberson's office, should be used. I called all four of the radiation centers of Cedars Sinai and talked with the radiologists at all four - and none of them had ever heard of low dose CAT scan machines. The claim was denied by my HMO and the only CAT scans that they would approve for Ben were to those at Cedars Sinai Hospital with "regular" CAT scan machines at regular adult levels of radiation. I have copies of all of these notes and email exchanges between the different parties - it ain't pretty. We sent articles, research, went through an appeals process - everything. No dice! After trying for over a year, I finally decided that time was ticking and I would pick up the tab myself. Interestingly, I did not know this at the time, but Cedars Sinai is also one of the hospitals in the US that was caught over-radiating patients. Here are two good articles on this topic, Overview Article from NPR Interview with Walt Bogdonich and a New York Times Article on Dangers of Over-Radiating.
Anyway, even though insurance would not pay for it, after a year and a half +, I ended up just calling Dr. Roberson's office in Palo Alto. The CAT scan with their Xoran CAT scan machine was very easy - Ben just sat there for less than a minute and the image was available for Dr. Roberson to read and discuss a few minutes later. The cost of the CAT scan was about $1,000 - but Dr. Roberson kindly gave me a courtesy adjustment.
INSURANCE COMPANIES AND MICROTIA AND ATRESIA REPAIR SURGERIES
Now for the big expenses: the atresia repair / canalplasty and microtia repair. There is a special "Insurance Costs and Coverage for Microtia/Atresia Repair" section in Facebook that is very good. The numbers are daunting, but it's clear to me that the doctors do not make much money out of the procedures after you account for adjustments. In particular, with the wide range of insurance companies with whom Dr. Roberson contracts, he's really doing his work as a labor of love. My main advice would be get a good PPO plan for which the doctors are in network - and expect to pay the maximum deductible associated with your plan.
The following are some notes from our experience.
Even with as much research as we had done, I didn't feel like I had a good handle on how much we would have to pay out of pocket and how the insurance piece would be calculated - until I received the statements after the surgeries. It was very difficult to financially plan ahead for what the insurance would not pick up. We were advised (correctly by both Dr. Lewin and by the insurance specialist at Dr. Roberson's office) that the best thing to do when you know you're going to have the surgery is get a good PPO plan. So that's what we did. We switched to my company's United HealthCare PPO plan. There was $2,250 deductible after which everything else in network was covered.
The combined surgery (where the canalplasty and microtia repair are done at the same time, which can be very useful to reduce the number of surgeries and shorten the recovery periods - especially for people with bilateral microtia aural atresia) between either (1) Dr. Roberson + Dr. Reinisch or (2) Dr. Roberson + Dr. Lewin or (3) Dr. Roberson + Dr. Brent is not recognized as a standard medical procedure by most insurance companies and therefore is not necessarily covered by insurance policies. The patients who had the combined surgery seemed to have had really good results (and we have met a few kids who got the combined surgery - usually bilateral), so we definitely would have wanted to consider that option. But because we needed to be certain of the level of insurance coverage, and because Ben is unilateral, we decided to go with two separate surgeries for canalplasty and microtia repair.
Since both Dr. Roberson and Dr. Lewin were "in network" for our PPO and we did the surgeries in the same year, the cost of the surgeries was covered minus the deductible ($2,250). While the insurance issue was a huge "black box" for us for years, when we got closer to committing to surgery, the staff at Dr. Roberson's office got pre-approval for the surgeries - and that was really reassuring and helpful. Also, in our face-to-face appointments with Dr. Lewin, she shared with us that she personally thought it was important to be part of insurance networks so that people could afford to leverage her services. I think (but could be wrong) that neither Dr. Reinisch nor Dr. Brent are part of insurance networks. That doesn't mean that insurance won't cover surgery with them - it just means that they don't have contracted rates with insurance companies and are considered "out of network."
Since the surgeries, the payment and accounting has been remarkably smooth/non-existent. We have not been billed or had to pay any money out of pocket beyond that which met the deductible.
Newsflash (as of November 2011): We receievd a letter from Dr. Roberson's office indicating that starting in January 2012, he would not be in network for my insurance. (I'm not sure if he's going out of network for all major insurance carriers or just mine (Aetna).
Update (from 2015): After we moved to Asia, we found out that the insurance that said that they would cover the entire repair of the repair ended up not covering all of it. So you can see - they can be shady...
