In the US only a few insurers don’t provide coverage for bilateral Cochlear Implants. This article tells the story of a determined mum who has caused another insurer to provide coverage.
Kiersta’s story highlights how advances in specific technology can outpace the development of policies that allow for sponsorship of the technology.
Challenging the status quo is an essential part of advocacy; it can lead to systemic change.
Kiersta and her mother, Alex DeMolina have been pioneers promoting assistive technology for children in Florida.
Kiersta was born on February 10, 2010 with a bilateral sensorineural severe-to-profound hearing loss.
Her family decided to pursue listening and spoken language for their daughter and began the process for cochlear implant candidacy immediately.
Through the Florida Medicaid system, administered by Florida’s Agency for Health Care Administration (AHCA), Kiersta was granted coverage for one cochlear implant at 16 months old. Results were outstanding with one cochlear implant; however after extensive research on bilateral cochlear implants, Alex DeMolina realized that Kiersta would be missing the binaural advantages of hearing with 2 ears.
This is critical for access to normal conversational levels of speech, as well as critical for safety and hearing in noisy conditions, such as in a classroom. There is a critical period of time where the auditory pathways are still developing binaural hearing and Ms. DeMolina did not want this time to pass for Kiersta. Ms. DeMolina decided to contact her providers to see if Kiersta’s other ear would qualify for a cochlear implant as well. Her Cochlear Implant Surgeon, Dr.K. Paul Boyev, her Audiologist, Dr. Nancy Muscato, and her Auditory Verbal Therapist, Kelly Teegardin were all in agreement that, in order to achieve binaural hearing, a second cochlear implant was medically necessary.
Nonetheless, Ms. DeMolina was informed that a second cochlear implant could not be covered, as bilateral cochlear implants were not sponsored under Florida Medicaid. Ms. DeMolina then launched her advocacy campaign “2 Ears are Better than 1”. Ms. DeMolina contacted Disability Rights Florida and worked in partnership to explore and research Medicaid policy and the exception to the service limitations.
Ms. DeMolina was able to track Kiersta’s application to eQ Health, which administers certain prior authorizations for Medicaid services. In their review process, eQ Health deemed it a medical necessity for Kiersta to receive a second cochlear implant. With this approval, Kiersta’s application then went to the AHCA office in Tallahassee. Working with Disability Right Florida, Ms. DeMolina was able to locate Kiersta’s application in the Special Services Department at AHCA. Several conference calls were held between Disability Rights Florida, Ms. DeMolina and AHCA staff until finally Kiersta’s application was approved; however this was a unique situation and AHCA was determining how to process her application for a second cochlear implant. On May 13, 2013 Kiersta underwent cochlear implant surgery for the second time.
On July 30th, Kiersta got to hear with her 2 ears, two years from the date she got her 1st cochlear implant activated.
She hopes that these conversations will lead to policy change where every eligible child has the option to hear with 2 ears.
In New Zealand we continue to languish behind the rest of the world in the area of hearing medicine. Only one Cochlear Implant is funded. Even in meningitis cases, only a second implant is funded. Parents have to find a bit over $10k for the speech processor part of the second implant system.
2ears2hear has recently acquired, via an Official Information Act request, the minutes of the meeting where this odd decision seems to have been made. These minutes, from December 2008, show that it was seriously suggested that children with two implants (due to meningitis) alternate the use of the one speech processor they are provided with between the two implants.
The suggestion shows a lack of understanding of how Cochlear Implants practically work and a lack of clinical knowledge of how hearing develops and works. The speech processor component of a Cochlear Implant system is coded to only work with one implant. While it can be re-registered to a different implant, this is not a simple process. Uncoding the speech processor (so it would work on both implants) risks physically damaging a users auditory nerve through over stimulation if an incorrect programme was accidentally used. In addition, it is not possible to develop binaural hearing with only one auditory source. Two ears need to be working concurrently to develop the ability to hear properly.
This suggestion was rightly critiqued by the clinicians at the meeting. However no resolution to this issue was achieved. The CI programmes appear to have to fund these extra implants out of their existing funding. This means funding allocated for upgrades and therapy is being diverted to fund these additional implants. This undermines the long term sustainability of New Zealand’s CI programmes.
The minutes from this December 2008 meeting also say “It was agreed that more work is needed to develop criteria for bilateral implants”. Almost 5 years later and there has been no progress. This is why New Zealand is now way behind almost every other comparable country.
In fact, it is almost 10 years since the last major piece of work was done on the Cochlear Implant services. This was an October 2003 review (The Development and Future Funding of Cochlear Implant Services) of the whole service and includes one sentence saying they expect there “…to be growing advocacy for bilateral implants which improves spatial hearing…”. Since that time the numbers of Cochlear Implant users in New Zealand has at least quadrupled, bilateral Cochlear Implants have become the clinically recommended approach for children with severe to profound bilateral hearing loss and New Zealand has sunk well and truly behind in treating these children.
In the covering letter with this Official Information Act response, Chai Chuah (National Director, National Health Board, Ministry of Health) writes… “The Ministry of Health acknowledges that there has been an increasing trend towards the provision of bilateral cochlear implants for infants and children and it is actively monitoring the research in this area”. The 2ears2hear team have two questions for the National Director:
- How much longer will the Ministry be “actively monitoring” this situation? Another 5 years? Isn’t it time to do what was agreed 5 years ago?
- How much more research does the Ministry really need before ‘active monitoring’ turns into ‘active action’?