ACI Alliance’s Role in Advocacy
ACI Alliance’s role in advocacy is to educate and encourage policy-makers and payers to take steps that expand access to cochlear implants.
- Utilize the State Champion program to monitor and impact the rollout of the Affordable Care Act at the state and federal levels vis a vis cochlear implant services.
- Participate in hearing loss and general disability organizations.
- Address the current shortcomings of Early Intervention advisement services to families as they relate to comprehensive, unbiased information on options and technology to parents.
- Lead member advocacy efforts in Washington to expand knowledge about cochlear implants and issues of access.
- In collaboration with other organizations, develop and disseminate multi-disciplinary clinical practice guidelines and undertake efforts that promote cochlear implantation as the standard of care treatment within non-hearing loss disciplines.
ACI Alliance on the Hill—At Home
October 6, 2016
ACI Alliance is continuing an important initiative this fall: ACI Alliance on the Hill—At Home. Congressional members are back in their home districts or states until after the November 8th election and we have a unique opportunity to reach out. This is a positive bipartisan initiative that many will want to take advantage of during the campaign season. We encourage you to invite your US Senators and your Member of Congress to visit your clinic, hospital, or school to:
- Share information about cochlear implantation and the local CI provider presence and see first-hand what you do.
- Ask your Senators to support the reauthorization of the Early Hearing Detection and Intervention Act. The House has already passed the legislation—we are looking for Senate sponsors.
This is an outreach effort that will be well received as elected officials are looking for opportunities to interact with constituents on non-controversial, bipartisan concerns of importance. Think of the impact we could have on awareness among elected officials and on our concerns if we all carried out this local initiative!
Some of our members have already held events. To view the experiences of two of our members click HERE.
There are three resources below that provide guidance to carry out ACI Alliance on the Hill—At Home.
Please contact Donna Sorkin, Executive Director with any questions. firstname.lastname@example.org
CALL TO ACTION: ACI Alliance on the Hill—At Home
Invite Members of Congress to your CI Center, Clinic or School this Summer
June 21, 2016
Building on the success of ACI Alliance on the Hill held in Washington, DC on October 14, 2015, we request all ACI Alliance members to schedule meetings with your Members of Congress at home! As the 2016 election draws closer, Members of Congress will be looking for positive opportunities this Summer to interact with constituents in their states and Congressional districts. We encourage you to invite your Members of Congress to visit your facility—whether it is a CI center, other clinic or school—to learn about cochlear implants and meet patients.
The purpose of these meetings is two-fold: (1) To share information about cochlear implantation and your work in their district or state and (2) To ask your Senators to support and cosponsor the Early Hearing Detection and Intervention (EHDI) Act of 2015, H.R. 1344. (The House already passed this bill.)
Background: ACI Alliance hosted a Congressional advocacy day last October, the day before the start of CI 2015 DC. ACI Alliance on the Hill followed a similar advocacy day held in October 2013. The day’s activities served as an opportunity for dozens of CI leaders to educate over 100 Congressional offices on the importance of cochlear implantation. ACI Alliance efforts led several Senators to cosponsor the EHDI legislation and also helped secure passage of the bill in the House in 2015.
Developing Congressional champions supportive of CI policy is imperative. The best way to develop Congressional champions is to have them visit your setting (clinic, hospital, university, school) to see—first hand—how you work with CI recipients and the extraordinary outcomes people achieve with this intervention. With Congress out of session until after the November 8th election, we have an ideal visit opportunity.
What you need to do now:
- Identify Your Congressman and two Senators by Googling “Find Your Senator” or “Find Your Representative.” Enter your zip code to identify your Representative.
- Click on the Congressman’s or Senators’ name to open his or her official website. Scroll to the bottom of the website to identify the district or state offices. Phone the office closest to your facility.
- Request that the Congressional Member visit your CI Center or facility. You may need to follow up with a short email requesting a visit.
- The purpose of the visit is to have your Member of Congress tour your center and learn more about cochlear implants, including what your center does to support CI. We will also ask you to discuss the pending early intervention legislation.
- You should directly reference your own experience with cochlear implantation during meetings and consider having a CI patient (child or adult) present.
- If they are unable to arrange a visit to your clinic, ask to visit the district office to meet with the Senator or Congressman when they have in-state office hours, as a first step.
- Follow up as these visits are often hastily arranged.
- Once confirmed, consider inviting local media if the Member’s office agrees. Request help from the public affairs office of your hospital, university or school, if your facility has one. This can occur as a reception or brief speech at your Center after the visit to increase exposure for your clinic or school and the Member.
- Two handouts are attached for your use in planning the Congressional meetings:
a. One page background on the pending Early Hearing Detection and Intervention law. The legislation has passed the House. We need to encourage Senators to sign-on as co-sponsors. At this writing, the Senate sponsors include Portman (OH), Gillibrand (NY), Kirk (IL), Cochran (MS), Wicker (MS), Klobuchar (MN), Murphy (CT), Boozman (AR), Bennett (CO), Blumenthal (CT), Schumer (NY), Blunt (MO), and Isakson (GA). If your Senator has already signed on as a sponsor, thank them for their early support. If they have not, ask them to sign up a sponsor of this important legislation.
b. Interview with Christy Maes, mother of the South Carolina child who has cochlear implants who competed recently in the National Spelling Bee in Washington, DC. The Maes family story is a great example of what can happen when early intervention services are provided properly. Neil Maes is 11 years old and deaf from birth, yet his language is such that he successfully competed with children from all over the US.
- Touch base with the State Champion from your state to coordinate your state efforts for maximum effect. You can find your ACI Alliance State Champ here: http://www.acialliance.org/page/ACIAStateChamps
- Let us know of any contacts you have made and also what transpired (i.e., who was your primary contact, who visited). Also be sure to tell us about any important comments or questions that were communicated during the visit so that we can keep track of what Members of Congress are concerned about. Please send an email to Susan Thomas (email@example.com) within a week of any visit regarding the above topics.
- Strive to have visits occur prior to the election week. Good luck!
Don’t hesitate to ask if you have questions or need help. Email Donna Sorkin (firstname.lastname@example.org)
To print this document please click HERE.
Support Passage of S. 2424 and H.R. 1344
Reauthorization of the Early Hearing Detection and Intervention (EHDI) Act of 2015
Original House Sponsors - Rep. Brett Guthrie (R-KY) and Rep. Lois Capps (D-CA)
Passed in the House - September 8, 2015
Original Senate Sponsors: Senator Rob Portman (R-OH) and Senator Kirsten Gillibrand (D-NY)
Introduced and Referred to Senate HELP Committee – December 18, 2015
- S. 2424 and H.R. 1344 amends the Public Health Service Act to reauthorize research and public health activities related to early detection, diagnosis, and treatment of hearing loss in newborns, infants, and young children. ACI Alliance strongly supports new provisions in the legislation that would ensure parents of children with hearing loss are presented with the full range of treatment options and that the reauthorization is extended to young children, in addition to newborns and infants. Activities authorized under the bill are conducted by HRSA, CDC, and NIH.
- Two to three out of every 1,000 children in the United States are born deaf or hard-of-hearing and more lose their hearing later in childhood, according the National Institute of Health.
- Certain genetic disorders, environmental causes, complications after birth, and certain infections can cause hearing loss in infants and children.
- Early Hearing Detection and Intervention (EHDI) refers to the practice of screening every newborn for hearing loss prior to hospital discharge. Infants not passing the screening receive diagnostic evaluation before three months of age and, when necessary, early intervention services by six months of age.
- According to reports, early intervention is particularly critical for speech acquisition in many children with hearing loss. All 50 states and the District of Columbia have EHDI laws or voluntary compliance programs that screen hearing.
- Early detection of hearing loss is just like the early detection of any other disease or illness—it can dramatically change the outcome of one’s prognosis.
- The Congressional Budget Office (CBO) estimates that enacting the EHDI Reauthorization bill would cost $212 million over the 2016 to 2020 period, assuming appropriation of the specified and necessary amounts. Enacting H.R. 1344 would not affect direct spending or revenues; therefore, pay-as-you-go procedures do not apply and it imposes no unfunded mandates.
- SENATORS: Please cosponsor S. 2424 and support its passage through the Senate HELP Committee as soon as possible and onto the Senate floor for passage.
- HOUSE MEMBERS: Please support EHDI Reauthorization being signed by the President this year.
 H.R. 1344 reauthorizes the federal authority for hearing tests and intervention programs for newborn babies, which were first authorized through the Newborn Infant Hearing Screening and Intervention Act of 1999.
© 2016 American Cochlear Implant Alliance
To print this document please click HERE.
For Maes Family Portrait please click HERE.
FCC takes action to make make all wireless devices compatible with cochlear implants.
January 28, 2016
American Cochlear Implant Alliance appreciated the opportunity to comment on the NPRM regarding hearing-aid and cochlear implant compatible handsets. To view the submitted comments click HERE.
Changes in 2016 Medicare Outpatient Payment Process for Cochlear Implantation
January 11, 2016
American Cochlear Implant Alliance submitted comments to CMS on the proposed rule for cochlear implantation services performed in the outpatient setting last summer. We are delighted to share very positive news regarding changes in the 2016 Medicare Outpatient Prospective Payment System (OPPS) relative to Cochlear Implants and Auditory Osseointegrated Implants (AOS), changes that were responsive to our submitted comments.
For 2016, payment rates for implant surgery performed in the hospital setting increased slightly. For cochlear implantation, reimbursement will increase 2.4% over 2015 to $30,421. For AOS, there is a 3.1% increase to $10,538.
Another positive change was made by CMS in the billing procedures for cochlear implant (audiology) programming. ACI Alliance and others submitted detailed comments on this issue (available HERE) in response to a prior Medicare decision that disallowed separate payments for services delivered on the same day (when one of the services was CI programming). We argued that such services are not necessarily related to CI programming and to disallow payment simply because multiple services to Medicare beneficiaries were delivered on the same day was unfair. Claims data demonstrated that there were a great many instances of same day unrelated hospital services; CMS responded to our request and lifted this restriction effective January 1, 2016.
A third issue that will improve access to cochlear implantation relates to the APC grouping for cochlear implant programming. ACI Alliance argued that CI programming services are separate and distinct from the surgery but do rely upon specialized skills by the provider professional. The programming for CI patients post-surgery is carried out by highly trained cochlear implant audiologists, individuals who typically specialize in programming. We argued that services are more like higher level diagnostic testing than the APC in which programming was placed and should be in a different APC. We stated in our comments that "when reimbursement for services does not reflect the complexity of the service or the actual cost of the service, hospitals may underinvest in clinical care and patients may experience long wait times when they attempt to schedule needed clinical services. This is currently the case with cochlear implantation in many areas of the country. " CMS agreed to move CI programming services provided on or after January 1, 2016 to a different APC, allowing for higher payment for programming services.
Standard for Cochlear Implant Systems
June 2, 2015
The FDA recently went through a process of looking at Cochlear Implant Systems – Safety, Performance and Reliability, available at the link below. This is a voluntary standard for cochlear implants that is now available for public review and comment. The standard development process was coordinated by the Association for the Advancement of Medical Instrumentation (AAMI) with participation by hearing healthcare professionals, CI manufacturer representatives, and staff from the FDA. To view ACI Alliance's submitted comments click HERE.
Legislative Alert on Early Intervention Law
April 10, 2015
On March 10, 2015 Congressional Members Guthrie (R-KY) and Capps (D-CA) introduced a bi-partisan bill that proposes to reauthorize the existing Early Hearing Detection and Intervention (EHDI) Act, which is due to expire in 2015. This is the bill that provides Federal funds to states for newborn hearing screening and also supports state early intervention services. Many ACI Alliance members have observed that too often parents do not receive the information that they need to make early and informed decisions for their deaf child. Working with a coalition of groups, American Cochlear Implant Alliance urged for language in the bill highlighting the need for parents to receive comprehensive, evidence-based information about the range of technology and language development options available to a child with hearing loss. The legislative language proposed by Congressional Members Guthrie and Capps includes specific mention of cochlear implants as a technology option. This is an important and timely law for children born deaf or for those who become deafened by age 3.
We are urging our ACI Alliance members to get involved by asking your Congressional Members to sign on as Co-Sponsors of the bill. This is not difficult to do:
- Use your zip code(s) to determine your Congressional Member(s). Go to:http://www.house.gov/representatives/find/
- Try zip codes for your home and clinic/office/school as you may have two Members you can contact if you live and work in different Congressional districts.
- Use the email address for constituent contact. Introduce yourself and explain how you work with children and why this bill matters.
- Ask your legislator(s) to sign-on as Co-Sponsor(s). Send them the "Dear Colleague” letter and bill:
- Follow up with a phone call to the staff if you don’t hear back. Be sure to thank them.
- Let us know what you did and what happened at email@example.com. Be sure to report back on any Members who signed on as Co-Sponsors if you contacted them.
January 30, 2014
Washington DC Advocates Urge Better Medicaid Coverage and Payment
ACI Alliance is supporting the efforts of Washington, DC advocates to proactively address very low Medicaid payment and incomplete coverage issues for the set of services inherent to cochlear implantation. On January 30, a group of advocates met with DC Medicaid officials to discuss the city’s current policy and its effect on access. Led by State Champions Jeffrey Kim and Michael Hoa of Georgetown University Medical Center, the effort was further boosted by River School staff Nancy Mellon (director) and Meredith Ouellette (speech pathologist) and the group’s secret weapon 12-year old Grace Kowal—a bilateral cochlear implant recipient and River School graduate. ACI Alliance Director Donna Sorkin provided support and attended the meeting. We were gratified at the positive response of the Medicaid director and staff, who indicated they will work with these advocates to bring about more appropriate cochlear implant (Medicaid) coverage in Washington, DC.
ACI Alliance submits comments to CMS urging clarification of Cochlear Implant Services Under the ACA
December 19, 2014
In late December 2014, ACI Alliance and several of our State Champions submitted comments to the Centers for Medicare and Medicaid Services asking that the US Department of Health and Human Services further clarify the definition of Rehabilitation and Habilitation services under the Essential Health Benefit (EHB) of the Affordable Care Act. Similar comments were sent to the US Office of Personnel Management. Given that appropriate and adequate coverage of cochlear implants can make a critical difference in the lives of individual Americans with severe to profound hearing impairment, the ACI Alliance recommended the following for inclusion in the final rule.
Prohibit unreasonable and arbitrary visit and dollar limits on a specific category of benefits such as follow-up audiology or therapy services. ACI Alliance found that most ACA plans limit the number of therapy visits to 30 per year. Further, plans plans should not place arbitrary limits on devices which prevent a patient from receiving the accepted and recognized standard of care appropriate for that benefit. For example, limiting a device benefit to one device per year would prevent a child with profound hearing impairment from receiving bilateral cochlear implants, which are now the standard of care for children with profound hearing loss to allow them to develop language that is as close as possible to that of their typically hearing peers.
Cover device maintenance, including replacement batteries and long-term maintenance of external devices even after a device warrantee runs out. With regard to CI, the replacement of processors is a prime example of the need for the coverage of device maintenance under the EHB.
Our full comments are attached here (Affordable Care Act and US Office of Personnel Management).
Guidance for Submitting Comments on Continued Medicare Coverage of Osseointegrated Implants
August 7, 2014
The attached materials have been developed to help you submit comments regarding the proposal by the Centers for Medicare and Medicaid Services (CMS) to change the classification of Auditory Osseointegrated Devices under Medicare. Instead of covering these devices (brand names Baha, Ponto), CMS is suggesting that Medicare will now view the bone anchored prosthetic device as a hearing aid and exclude it as a covered benefit. This would affect both new surgeries and aftercare services for existing Medicare patients. Likely such a change, if implemented by CMS, would also affect coverage by many private insurers which are currently covering the bone anchored device. The proposal specifically exempts cochlear implants and ABI devices.
ACI Alliance Board Members and staff have already held multiple meetings with CMS officials. We have also met with Members of Congress. We urge you to send in your own comments expressing your concern to help generate strong national opposition to this change, which would dramatically impact on access to care for these devices. There is a real likelihood that without significant input from the hearing loss community that this proposal will be implemented.
Following this introduction, please find two items intended to help you write your own letter as a clinician, educator, parent or consumer: (1) Key Messages/Facts and (2) Guidance for Letters. Even if you primarily work with children, please emphasize the importance of this intervention for older adults under Medicare. Please write a letter in your own words and do not use the same language that is in the attached Key Messages document.
Comments are due to CMS on September 2, 2014. The best way to submit is electronically via the CMS website. This link takes you directly to the correct place to submit: http://www.regulations.gov/#!documentDetail;D=CMS-2014-0092-0002. It is a good idea to note that this is CMS-1614-P. Include this reference in the template for your letter.
If you wish to read the Federal Register in which this proposal is contained, go to: http://www.gpo.gov/fdsys/pkg/FR-2014-07-11/pdf/2014-15840.pdf. The osseointegrated device proposal begins on page 89 (40295 of the July 11 Federal Register). Do not be confused by the reference to "End-Stage Renal Disease;" the discussion of Osseointegrated Devices comes toward the end of the proposed rule.
When submitting, you can either paste your comments directly on the submission site (maximum of 5,000 characters) or you can attach a letter to website. Keep in mind that if you paste comments in, there is a 5,000 character limit (which is less than two pages).
Please send a copy of your letter submission so that we can know the impact of our outreach effort to our executive director, Donna Sorkin firstname.lastname@example.org. Thank you so much for your interest in ensuring access to appropriate hearing care.
There are additional materials in support of our efforts at the following pages:
- Background Messages
- Suggested Letter Format
- Osseointegrated Bibliography
ACI Alliance Input to State Agencies
The ACI Alliance and others in the cochlear implant community participated in the Washington State Health Technology Assessment, a process to determine if and how the state would cover bilateral cochlear implants under state sponsored programs such as Medicaid. John Niparko, MD, Past Chair of the ACI Alliance Board of Directors, provided oral testimony at the Clinical Committee Meeting on May 17, 2014.
To see presentation by John Niparko, MD, click here to download.
To read word document from ACI Alliance, click here to download.
Comments on Bilateral Cochlear Implants submitted on April 8, 2013.
WA State April5_2013.doc
Comments on Bilateral Cochlear Implants submitted on November 29, 2012.
To read full comments, click here to download.
As a result of the proceeding, the State of Washington has agreed that it is desirable to cover bilateral cochlear implantation in publicly provided insurance programs such as Medicaid.