There are many opportunities for patients and families to share their personal stories with legislators and influence decisions on proposed bills affecting individuals impacted by rare diseases like Alport syndrome.
Jennifer shares her experience advocating for improved health insurance coverage of hearing aids for young patients in her state.
Last year, South Dakota Senator Billie Sutton introduced HB122, a bill which, if passed, would require health insurance companies doing business in South Dakota to cover medical costs associated with hearing loss for children ages birth to 19. It was proposed that health insurance companies recognize hearing loss as any other medical disability and begin to view hearing aids and audiology evaluations, assessments, and services as a medical necessity for children. Currently in our system, these items are viewed as non-medically necessary, elective, or even aesthetic by most health insurance companies. Inconsistencies were pointed out within the state system, such as the fact that South Dakota Medicaid and CHIPS (Child Health Insurance Program) covers 100% of these costs for children, recognizing them as medically necessary, but private health insurance companies were not doing so.
Myself and several other parents from across the state testified before a hearing committee during early stages of legislation. We talked about our children with medical issues which caused progressive and permanent hearing loss, and how we were being left high and dry by the health insurance companies we paid hundreds of dollars to every month. With hearing aids costing $3,000-$7,000 a pair and the services needed in order to properly evaluate, fit and service them running in the thousands as well, a true financial hardship is placed on many families who already have astronomically large medical bills. This problem applies particularly to hard working families like mine that do not qualify for state or federal assistance programs, and had drained our life savings and other resources in order to provide these much needed items for our children. Medical professionals also testified to the fact that children with hearing loss become depressed, withdrawn, and socially awkward when they are unable to hear their peers and their surroundings like other children. They become challenged academically and therefore are less likely to attend college and pursue professional careers. A neurologist testified that parts of brain development are deeply affected by not massaging the parts of the ear that affect the brain stem and affirmed that hearing aids provide that stimulation.
HB 122 passed the hearing committee and House unanimously despite lobbyists from health insurance companies who testified that the cost to insurance companies, and therefore to customers, would be too great (they testified in the hundreds per month). The actual cost was calculated at $2 per adult South Dakotan, per month. Unfortunately, this bill was ultimately killed on the floor.
Although this particular bill did not pass, a portion of it did get picked up by another committee (Department of Human Services), which took on this crusade and rolled it into their South Dakota Relay Services funding. As it was, deaf South Dakota residents were given special landline phones which utilized third-party telecommunication services in order to give them access to the outside world. As landline phones are becoming more and more obsolete, the funding was revised to include iPhones and in some cases iPads for deaf South Dakotans. The new funding revision also includes financial assistance for the purchase of hearing aids and some cochlear implants for children ages 0-19. There are income guidelines and a sliding contribution scale. These provisions actually went into effect in October 2014 and my family plans to utilize it soon to help cover the cost of new hearing aids for our 14-year-old just starting high school to replace his 6-year-old hearing aids.
Although it was disappointing that our legislators did not hold health insurance companies accountable, it was encouraging and a huge victory for parents of hearing impaired kids in South Dakota to be recognized and provided with assistance.
Originally published October 2015.