STATE CHAMPIONS MEET IN TORONTO

State Champions met during the 14th International Conference in May 2016 to discuss the Alliance’s new advocacy initiative for the summer: ACI Alliance on the Hill—At Home. Given this year’s especially long Congressional recess from mid July to early September, we have a unique opportunity to reach out to elected officials while they are in their homes districts or states this summer. We discussed plans to encourage ACI Alliance members to invite Members of Congress to visit clinics or schools while they are at home for the long summer recess (July 16–September 6). The purpose identified was two-fold:

1. To share information about cochlear implantation (CI) and the local CI provider presence and
2. To ask Senators to support the Early Hearing Detection and Intervention (EHDI) Act of 2015, S. 2424. The bill has already passed the House.

As of mid August 2016, two State Champions had jump-started the summer program with Congressional visits to their clinics.

Led by State Champion Casey Stach AuD, the University of Michigan Cochlear Implant Program hosted US Senator Debbie Stabenow’s staff. University of Michigan staff discussed the benefits of early intervention (EI) and shared details on hearing aids and cochlear implants and what they provide for a child with hearing loss. They urged that the Senator sign on as a co-sponsor of the EHDI bill.  

State Champion Casey Stach also arranged for the Senate staffer to meet families including two siblings, ages 9 and 4. She chatted with the family and learned how early intervention and CI technology changed their lives. Another conversation was with a mother and her 4-year-old son who began his CI journey with an evaluation at 7 weeks of age, then was implanted at 12 months with his first device and at 15 months with his second. Both families were important communicators regarding the importance of early intervention with a cochlear implant.

Connecticut State Champion, Marion Radeen MS, worked with others at CREC Soundbridge to host a visit by US Senator Richard Blumenthal on July 21. CREC Soundbridge provides audiological and educational services to children throughout Connecticut. Families were invited to attend and share their experiences with the Senator including the value of early identification and follow-up services such as those provided by CREC. The Senator had previously signed on as a co-sponsor of the EHDI Bill after contact by our State Champions in Connecticut.

Making connections with Congressional offices and developing relationships with Members of Congress who may champion CI intervention in the future is essential. The best way to develop Congressional champions is to have them visit clinics, universities, schools to see—firsthand how clinicians and educators work with CI recipients and the extraordinary outcomes people achieve with the intervention.  Materials provided to advocates are available at http://www. acialliance.org/page/Summer2016

FOCUSING ON MEMBER ADVOCACY TO BRING ABOUT POSITIVE CHANGE DURING CI2015

ACI Alliance advocates arrived early at the October 2015 CI conference so that they could participate in ACI Alliance on the Hill Capitol Hill visits. The day’s activities served as an opportunity for 75 cochlear implant (CI) clinicians, scientists, educators, parents and consumers to educate over 100 Congressional offices on the importance and implications of cochlear implantation. Susan: first you said nearly 90 and then you gave the actual number (75). I took out the almost 90 but you can go with almost 90 or you go with 75 but not both.

Participants were organized into 25 groups, so that individuals from the same state would attend meetings together. Materials and key messages, including meeting talking points, were developed for participants and shared during a training session for advocates prior to traveling to Capitol Hill.

Advocates led meetings with Congressional staff members regarding several topic areas pertinent to cochlear implantation. In the Senate meetings, advocates focused on requesting support for the introduction of the Early Hearing Detection and Intervention (EHDI) Act 2015, H.R. 1344 which had not yet been introduced into the Senate at the time. EHDI would amend the Public Health Service Act to reauthorize research and public health activities related to early detection, diagnosis, and treatment of hearing loss in newborns and infants. ACI Alliance strongly supports new provisions in this legislation that would ensure parents of children with hearing loss are presented with the full range of treatment options—including cochlear implantation—and that the reauthorization is extended to young children, in addition to newborns and infants.

The House of Representatives passed the EHDI Reauthorization Act in September 2015; hence meetings there were intended to thank offices for their support and focus on educating Hill staff about CI intervention, the continuum of care, and appropriate coverage of therapy after surgery.

As a result of our meetings and contact by other groups, Senators Portman and Gillibrand introduced S. 2424, the Senate version of the EHDI law, in December 2015 just prior to the holiday recess. We are very proud of the work of all of our advocates in moving the bill forward.
 

STATE CHAMPIONS MEET IN NASHVILLE 

ACI Alliance State Champions met in Nashville to discuss our work, which thus far has largely related to assessing coverage of cochlear implantation under Affordable Care Act Marketplace plans. We also discussed branching out to other topics. Our findings indicate that while Marketplace Plans do cover CI, we have thus far seen few patients come through who are accessing their insurance coverage through the Marketplace Plans. The concerns that we have relate to limitations on the number of therapy sessions available under such plans, which are typically limited to 30 sessions per year—regardless of the age of the patient. Such limits, which are often referred to as “therapy caps,” are increasingly common in private insurance plans as well.

To share our concerns on this topic, ACI Alliance provided written comments to the US Department of Health and Human Services and to the US Office of Personnel Management. Several of our State Champions submitted comments as CI clinicians. We emphasized the critical need for appropriate follow-up care post CI surgery. You
may view our comments on the ACI Alliance website.

Our lively discussion in Nashville also addressed our focus going forward. We explored two topics that impede access to care: (1) Low Medicaid payment rates for cochlear implant surgery and follow-up services and (2) The need for language in the Reauthorization of the Early Hearing Detection and Intervention Act of 2015 to address the lack of information provided to families on technology and communications options for a young child with hearing loss.

With regard to the issue of low Medicaid payment, we will develop materials that can be utilized by State Champions who wish to lead initiatives in their own states to address Medicaid payment and coverage concerns. Our Washington, DC State Champions have already initiated such a process involving clinicians, educators, and families.

With regard to the issue of parent information, CI clinicians continue to see children arrive at their clinics who were identified deaf at birth but enter the CI process late because families were not given information regarding cochlear implants as part of early intervention advisement. US pediatric CI utilization rates are half of comparable rates
in Western Europe, largely because families do not receive the information they need to make informed and timely choices for their children. ACI Alliance has joined with other organizations in the hearing health field to address this concern.

Our advocacy efforts have been greatly advanced by these dedicated individuals working at the State level. Most of our meetings are held in the evening via teleconference. We will hold an in-person meeting at the upcoming CI2015 DC Symposium.

ACI Alliance State Champions met at CI2014 in Nashville to plan future initiatives.