Amy: Everyone is into discussions these days regarding healthcare in our country. How can we make it more affordable? Accessible? Regardless of what bill we end up with in congress, in the next few years we will have to get some important messages about hearing loss to insurance companies, doctors, and the government.
Coverage for hearing aids and cochlear implants is crucial. This isn’t about being fair or nice. Sure, we want companies and the government to be fair and nice, but we are realistic– many decisions are made because they are a cost effective way of dealing with a medical condition or illness. We don’t want to be throwing money around for experimental or wasted use. Coverage of cochlear implants SAVES society and insurance companies money– and lots of it.1 As parents, of course, our reasons for wanting coverage are deeper and more about wanting the best for our kids– but in this case, it’s in perfect alignment with cost saving measures.
The world operates as a hearing world. As much as we try, we cannot (for example) make the entire world handicap accessible. We’ve all seen wheelchairs at amusement parks or national forests. It’s great that there are paths and various things which make bathrooms, restaurants and scenic overlooks approachable to all. But not ALL areas are approachable. If you want to hike the Appalachian trail, and you use a wheelchair, it’s unlikely it will happen. So back to the hearing world. Even in the best of circumstances with a child who uses sign language, even if her entire family is fluent in sign language and her teachers teach with it, eventually she will have to go to college and get a job. Not every single scenario of learning and employment can be accompanied by an interpreter. So, when a child goes from being deaf to being hearing with a cochlear implant, the world becomes a place which is much more accessible. How would you like to go to first Communion or a Bat Mitzvah and not know what the priest or Rabbi was really saying? Would you like to go to a grocery store and have people turn to you and say something, but know that you would never be able to get it?
More than that, it’s about psychological health. Studies2 show that implanted children are more likely to have normal self-esteem.
Melissa: Cochlear implants, hearing aids and glasses all should be part of basic health insurance coverage. Children can’t function well in school if they can’t hear or see well. Adults’ can function better in a job with optimal hearing and vision. That both hearing aids and glasses are not included in most health insurance plans is absurd. That some insurance plans still won’t cover cochlear implants is arbitrary and unacceptable. Part of health insurance reform should be determining what is standard of care and who makes that determination. Currently, these decisions are made by medical “experts” who work exclusively for the insurance companies. I have encountered these people too many times. One prime example was denial of coverage for my younger daughter’s cochlear implant processor upgrade simultaneously with approval for my older daughter’s. When I questioned my insurance company, the rationale the company representative gave me was that they covered my older daughter’s because she had experienced a failure of her cochlear implant two years before. Since a failure of the internal implant two years before has absolutely no bearing on whether or not upgrade of the external processor is warranted, the “expert” who made this decision clearly was no expert. Furthermore, the upgrade was approved for both of her ears even though the internal failure occurred in only one ear. I eventually won the battle to have my younger daughter’s processor upgrades covered because I was able to prove significantly improved hearing with the upgrade, but it took a few rounds of appeals and six months.
According to www.medterms.com, “standard of care” is defined as “A diagnostic and treatment process that a clinician should follow for a certain type of patient, illness, or clinical circumstance.” Healthcare reform should include a definition of standard of care that comprises not just that which is necessary for survival but also to preserve quality of life and, as Amy has described, a treatment that will enable society as a whole to save money in the long term even if it is costly in the short term. Those making these decisions need to truly be experts. It is not sufficient to use one person to make all medical decisions because, as any physician will readily admit, it is impossible for one physician to be an expert in every field of medicine. Any true health care reform has to include overhauling the system of who gets to make the decisions, and it should include true experts in each field who receive no benefit from denying care.
Amy: It’s no longer a question of efficacy– we know that cochlear implants work. Even studies about background noise with kids who have perfect hearing show that anything which reduces the amount of information a child hears can stunt their learning and language in school and in the home.
For parents who are fighting with insurance companies about any aspect of the cochlear implant, keep this axiom in mind: NEVER GIVE UP. Basically, if you pursue all avenues, you are very likely to win. The persistent parent will usually get what they need for their child. I guess it’s a “squeaky wheel” truth! We fought for over a year for Elliot’s 2nd cochlear implant on his left, non-implanted ear. When he had been implanted, as a baby, no one was implanting small children with two, and even one was sometimes a challenge. By the time he was 3 we were considering the idea and it had been done in a few children. It was intuitive to us that a 2nd ear would be better, but we were also armed with several studies indicating that it was beneficial for localizing sound and better hearing in noise.3,4 Since they refused 3 times, we were able to go to the state of Georgia’s Insurance Commissioner’s office, which quickly overturned their denials! The worst part of that process was the waiting… because insurance companies love to use up as much time as possible in the hopes that you’ll “give up.” (At least that’s my assumption.) The other part that was aggravating was simply getting the message to them that we were not speaking about hearing aids, that we had reams and reams of data, and that we expected a reasonable response. Most of their responses didn’t really make sense. But we also had help from the Let Them Hear Foundation, which gives pro bono assistance to families who need help fighting insurance regarding hearing health.
In the end, within a week of having received the good news, we received ironic news from a Blue Cross Blue Shield of GA Vice President– that ALL the Wellpoint companies had changed their policy to include bilateral cochlear implants. We believe that our case, along with many others, helped sway them toward this reformation of their policy. We then had NO trouble whatsoever in early implantation for our youngest son, even though he was below the “recommended age” for FDA approval of a CI. I tend to believe that there is a giant red sign on our file which says “don’t mess with these parents– it will get expensive!” Oliver was implanted at 6 and 11 months and insurance was a breeze. Whew.
Insurance companies are like a lot of other companies, in that they have to consider costs. No doubt they are dealing in a monopoly-style method, currently, which means they can all deny certain kinds of procedures because they don’t have to worry that we’ll leave. We have to stick to our employer’s plan(s) and can only switch at appointed times, so we can only really “shop around” at specified times and within very strict parameters. I hope that this will change so that we can all be consumers of the most satisfied sort! But in the meantime, when you are fighting your battles with giant mega companies, here’s a tip: make sure they see you as a real person. Send photos of your children. Explain how they use their CI in daily living. Explain the dangers they will deal with if they don’t have what they need! I found the addresses and phone numbers of the highest employees at Wellpoint, the parent company, and sent them poignant letters. And, one of those was the one who called me personally to let me know about the change in Wellpoint’s policy. I knew everything about him at that point– where he went to college, his resume, etc. And I believe that he was affected by our letters and was truly happy to see things go well for us. He indicated as much by his phone call, which was unnecessary at that point.
Melissa: Even if health care reform is passed, parents and patients will still need to remain informed and assertive because the fact is that money to provide coverage will be finite with any option. With cochlear implants, though, the fact is that they work and, in the vast majority of cases, save society money in the long run by enabling our children to be hearing, speaking fully functioning members of society who do not need to rely on special services, such as interpreters, to communicate in the work place or with the rest of the world.
1Cheng A K; Rubin H R; Powe N R; Mellon N K; Francis H W; Niparko J K. “Cost-utility analysis of the cochlear implant in children.” .JAMA : The Journal of the American Medical Association 2000;284(7):850-6.
2Percy-Smith, Lone; Cayé-Thomasen, Per; Gudman, Mette; Jensen, Jørgen Hedegaard; Thomsen, Jens. “Self-esteem and social well-being of children with cochlear implant compared to normal-hearing children.” International Journal of Pediatric Otorhinolaryngology 2008 72, 1113-1120.