The Road to Parity

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By Morgan Sheets

What happens when a national organization steps forward and takes a risk in order to meet the needs of its constituents? With the formation of a new campaign, the Amputee Coalition of America (ACA) is helping to shape healthcare policy one state at a time.

For the past 20 years, the primary mission of the ACA has been to support, educate, and empower individuals with limb loss. While many private insurance companies will pay the surgical cost of amputating a limb and for subsequent amputations caused by inactivity, they are simultaneously limiting or even eliminating prosthetic coverage. This has placed needed prosthetic care out of reach for many people all across the nation.

In response to overwhelming calls for help from a growing number of people experiencing difficulty in obtaining appropriate prosthetic care, and to inform the country about this injustice, the ACA dramatically increased its advocacy efforts. In 2006, the ACA kicked off its Action Plan for People with Limb Loss (APPLL), a national campaign working state by state to introduce legislation requiring insurance companies to cover prosthetic care. The ACA's advocacy program works with manufacturers and industry partners, public health organizations, its 244 support groups and 623 certified peer visitors, people with limb loss and their families, and healthcare providers. The ACA's goal is to heighten awareness and generate action to ensure that people with limb loss and limb difference in every state are able to receive the appropriate care and prosthetic services that they need to continue to live long and productive lives.

In 2001, Colorado was the first state to successfully pass prosthetic parity laws mandating that third-party payer coverage is consistent with Medicare standards. This was followed by Maine in 2003 and New Hampshire in 2004.

Growth and Momentum

To continue to meet the needs of the campaign, the ACA hired a new staff member and opened a second office in downtown Washington, DC. It also recently kicked off a volunteer program designed to mobilize activists in the DC metro area. This program will enable the ACA to provide additional resources to the 22 states that are working to advance legislation, including data entry of new petitions and making calls to activists and engaging them around a key vote or encouraging them to attend a lobby day.

The ACA also provides direct technical support and training to the individuals and committees working at the state level, helping them to develop fundraising, organizing, and media strategies that reflect the issues and interests unique to each state. The ACA has produced educational materials, talking points, and other analytical resources to be used with policymakers and the media.

The ACA's organizing and volunteer efforts have been enhanced by its ability to engage and activate support through its new online Action Center, which went live in November 2006. It offers up-to-date information, easy-to-use online campaigns, and step-by-step tools to more effectively engage members and create the systems needed to expand the ACA's legislative program into the federal arena.

The ACA is working to build capacity at the federal level by mobilizing members on a targeted set of issues. It has also started to reach out to key leaders and decision makers at the federal level to start to build toward legislation at the congressional level.

Throughout 2006, the ACA's new advocacy program provided the necessary guidance, assistance, and resources to local groups to help them seek the passage of parity legislation. And with the help of the ACA, Rhode Island, Massachusetts, and California all passed bills in 2006.

Success Story: Rhode Island's Road to Parity

In the late 1970s, the Rhode Island General Assembly passed the first prosthetic licensure law in the United States. Nearly 30 years later, William R. Teoli, CP, and Rep. Joanne M. Giannini (D-RI) began working together with patients, legislators, healthcare providers, and amputee support groups to raise awareness for legislation that would benefit O&P users through parity.

In 2005, a group of Rhode Island O&P practitioners formed the Rhode Island Society of Orthotists and Prosthetists (RISOP), a nonprofit organization dedicated to promoting education and awareness in the community, as well as supporting patient advocacy issues. RISOP immediately began working toward the goal of creating an environment that would provide O&P users with truly comprehensive care. One of the things they did to help build their campaign was to reach out to the ACA for assistance with their efforts to pass parity into law.

The ACA was involved in a variety of ways including generating letters, e-mail messages, and calls from ACA members and lobbying the governor's office for a signature.

On July 7, 2006, Rhode Island became the fourth state to pass prosthetic parity into law, a bill to ensure that private health insurance plans will provide medical coverage for orthotic and prosthetic (O&P) devices that equal benefits provided under federal Medicare and Medicaid laws.

Pennsylvania Lays the Groundwork

Pennsylvania is well on its way to becoming the next state to celebrate a parity victory. The Pennsylvania bill was inspired by Rep. Bernie O'Neill's (R-PA) legislative aide, Nick Antonini, whose son David is an amputee. David's insurance challenges opened the Buck County legislator's eyes to the need for insurance parity for prosthetics.

O'Neill's staff approached the ACA last February to help champion a bill. Over the spring, the ACA helped gather information to draft the bill and reached out to its members to start to build a campaign committee. The ACA then worked with O'Neill's office and local ACA members to organize a series of meetings in the summer of 2006. They convened gatherings in Philadelphia, Middletown, Pittsburgh, and Nanticoke to raise awareness about prosthetic parity and identify leaders and activists to help further the campaign.

The meetings were successful. The bill was introduced during that same week. After the bill was referred to the Health & Human Services Committee, the ACA helped to lobby committee members, generate calls, letters, and e-mail messages as well as prepare testimony for the hearing. The lead sponsor and committee vice-chair publicly committed to passing the bill in 2007.

Pennsylvania stands out as one of the most successful parity campaigns. With a strong campaign committee, it has had over a dozen letters printed in papers throughout the state and recently gathered hundreds of signatures during an incredibly successful petition drive. Pennsylvania is currently planning a rally and lobby day in April.

Continuing the Fight

Last year eight states introduced bills into their legislatures. In addition to the six states with laws on the book, as of January 2007, an additional 22 states are working with the ACA to develop and implement a campaign plan that will advance prosthetic coverage.

Over half of the country is now part of the campaign for prosthetic parity. It just goes to show that when advocates, individuals, practitioners, and industry partners work together, great things can-and do-happen.

Morgan Sheets is the national advocacy director for ACA's Action Plan for People with Limb Loss (APPLL) initiative. She can be reached at  APPLL@amputee-coalition.org. For more information, go to  www.amputee-coalition.org/advocacy/index.html