This page will provide you with an overview of insurance coverage as it relates to the surgery itself, rehab, and SDR-related travel. Keep in mind that this is just a guide based on what I’ve found, accepted insurances may change, and I’m not an insurance expert by any stretch of the imagination … so you definitely need to double check all of this information.
Insurance for SDR
Families in the United States will find that SDR is often covered by insurance. However, sometimes it’s not that simple. Coverage depends on many factors, including the type of insurance you have (and your specific plan), the state in which you live, and the surgeon you choose. Sometimes they pay completely (minus your deductible), sometimes they pay a percentage (e.g., 80 percent, 50 percent), and sometimes they refuse to pay anything.
When I pursued SDR, my insurance was a Blue Cross Blue Shield (BCBS) PPO plan. PPO plans offer more flexibility to see a doctor outside of the plan’s network, although they may reimburse less for an out-of-network provider.
HMO plans don’t allow you to go to an out-of-network doctor, so some people with an HMO can run into trouble if their SDR surgeon is considered out of network. However, you may be surprised to learn who is considered to be in network! St. Louis Children’s Hospital was considered to be in network with my plan, even though I lived a thousand miles away. As a result, my St. Louis SDR and PERCS were completely covered, minus a small deductible. This is common.
Families who wish to pursue out-of-state SDR sometimes have difficulty getting coverage when another surgeon performs SDR within their state.
Sometimes, Dr. Park can write a letter to the insurance company to try to convince them to pay, so this is worth looking into as well. (At times, I’ve even heard of in-state neurosurgeons writing these letters to the insurance company, explaining why SDR with Dr. Park is the best option.)
You can call your insurance company to check your coverage with your chosen surgeon. (And if they agree to provide coverage, be sure to get that in writing.) You’ll need to give them two codes. If you’re pursuing SDR for cerebral palsy, the first code you’ll need is the diagnosis code (IC-D10), which is G80.9. The second code is the procedure code (CPT), which is 63190. If you’re considering SDR in St. Louis, Dr. Park’s office can also help you check your insurance coverage and navigate your options.
Insurance for Therapy
Check with your insurance company to see how many PT sessions you are allowed per year. Some plans offer unlimited, and others have a cap. Sometimes, this cap is a “hard cap,” meaning that no amount of convincing or negotiation will get them to allow more sessions. However, some insurance companies may cover more sessions if these sessions are deemed a medical necessity (and post-SDR sessions are!). You can ask your therapist and doctors to advocate for you by calling (or writing a letter to) the insurance company to explain the situation. They should emphasize that these sessions are crucial and that a bunch of PT now will save money in the long-term by preventing future medical issues. You may also be able to get additional sessions if your therapist can prove that you’re continuing to make progress.
If you cannot get your insurance company to approve more visits, don’t despair. Talk with your SDR surgeon and therapist about non-PT options for continuing to build strength and flexibility, such as gym workouts, home exercise plans, and sports/other physical activities. Some people also fundraise to cover more sessions.
International families in particular tend to book travel insurance before heading to the U.S. for SDR surgery. For those in the UK, the most common option seems to be InsureandGo. Other families have used AXA.
Travel insurance won’t cover any medical expenses directly related to the surgery, but my understanding is that they will cover costs associated with flight cancellations, lost luggage, and medical issues for the patient and family as long as they are not related to the SDR/PERCS surgery. (Double check this with your insurance provider, of course; again, I’m no insurance expert!)