The Road to Parity

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By Judith Philipps Otto

ACA Leads the Legislative Battle in Washington DC

It seems so ethical, obvious, and appropriate on the face of it; however, most Americans don't realize that prosthetic parity is an issue over which determined players are fiercely battling. As those in the O&P profession are well aware, thousands of people who face the trauma of limb loss are faced with the additional shock of discovering that their insurance company will not pay for the prosthetic limb that is essential for their return to an active and productive life, wherein they may happily support their families and contribute to society.

Parity laws-which essentially mandate that prosthetic care is on par with other basic medical services such as hospitalization or surgical care-have been the source of controversy for the last decade, dating from initial efforts in Colorado toward passage of the first such bill, which became a law in 2000.

As of this writing, parity laws have passed in nine states, and 30 more states are actively working to get bills introduced and passed by their legislatures. A federal parity bill, which would benefit amputees and prosthetic service providers in every state, was introduced into the House of Representative on March 17.

Like a football game, this national parity face-off is a complex and carefully strategized campaign, involving fancy footwork, quick reflexes, and constant vigilance, wherein each team relies heavily on its sponsors, fans, and cheerleaders. But unlike a game that leaves merely disappointed fans in its wake, the national parity bill represents the futures of the 1.9 million amputees in the United States.

Who Is Driving the Movement for National Parity?

As with any sizeable undertaking, a hardworking confederation of committed partners is essential, and this is certainly true with the parity movement, where the professional O&P community, together with its state and national associations, early recognized the value of working with client-based groups and organizations. Chief among them is the Amputee Coalition of America (ACA), which has taken an active lead and currently serves as standard-bearer for the campaign.

It became clear from the onset, according to Jeffrey Cain, MD, a family physician in Denver, Colorado, and an ACA activist, that the most powerful argument one could advance for prosthetic parity was the obvious need of people whose lives were disastrously impacted by the failure of their insurance companies to provide the expected reimbursement for a prosthesis.

"One of the things we found," says Cain, "was that if the prosthetists went forward to address the legislature, it was perceived as in their business interest and did not have the emotional or legislative traction. But when we had the amputees front and center talking about how this had affected their lives, it changed the conversation. Even legislators who have traditionally opposed mandates were able to support this bill."

Paddy Rossbach, RN, president and CEO of the ACA, agrees. "We have learned that having the individual amputees as activists is probably the strongest weapon that we have in this battle, which is why we are taking the lead in this initiative. Legislators want to hear from people who are going to be directly affected in a very positive way, not necessarily in the way that is going to profit the for-profit organizations."

The ACA is quick to note the importance of its active partnership with the O&P community, however. When the ACA hosted its first stakeholder meeting in 2004, it invited representatives from all the O&P organizations to support a legislative initiative.

"We have had tremendous help from within the prosthetic community," Rossbach says. "Although we fund the staff at our DC office, the states themselves have to fundraise for the committee work that they're doing out there. It is with significant help from the prosthetic community that things are being accomplished."

Rossbach notes that the ACA has also received "significant support" from several major manufacturers and organizations that were especially helpful at the beginning of the national campaign.

What Started the Movement?

Cain recognized a need for legislation in Colorado when, as the result of an accident in 1996, he realized that his "great" insurance still left him with charges of $9,000 to pay for his first prosthetic leg.

"I had enough money to be able to afford a new leg and an old car; but I realized that if I were a schoolteacher, that probably wouldn't be true," Cain says.

He began networking with other amputees through ACA meetings and discovered that others faced similar-or worse-financial challenges.

Cain consulted a state senator, who suggested that with a little effort, they might be able to make a difference.

He began visiting support groups and collecting stories. He also built a team of activists willing to share their various skills, drafted support from state prosthetists, and after 18 months' worth of meetings and active fundraising, they drafted a bill that passed in the first session-despite opposition-on an annual budget of less than $15,000, most of which went to hire a lobbyist.

Colorado's bill requires health insurance policies offered in the state of Colorado to cover prosthetics at the same level as Medicare-an 80-percent payment with a 20-percent co-pay.

The bill passed quickly, Cain says, because they had good support. The volunteer amputee team brought lobbying and organizational skills and experience in electronic communication and fundraising, as well as good legislative sponsors in leadership positions. "We had people from both sides of the political aisle. It's important to understand both the conservative and the progressive perspectives in your legislature and be able to work both sides of the aisle," he advises.

"Colorado law required us to be able to identify costs to the insurance company and the industry-which turned out to be only 12 to 14 cents per member per month-which is a very small amount of money for a very large benefit.

"By keeping people employed, you're also keeping people off of Medicaid. Do you know how much it costs to train a new employee? About $40,000. So part of your pitch is that this ultimately saves money for the businesses, the government, and society overall."

According to Morgan Sheets, national advocacy director for the ACA, "We didn't see this as a national trend until 2000, when a lot of insurance companies started to change the way they were providing coverage and reimbursing for coverage for prosthetic care. The state of Colorado, due in large part to Dr. Cain's leadership, decided to address it legislatively, through policy. Certainly there have been other avenues that were attempted, but it is the legislative arena in which we have experienced the most success."

When and Why Did the ACA Get Involved?

In a survey of its members, the ACA found that being able to afford appropriate prostheses was their number one concern.

"The reason that we are doing this," says Rossbach, "is that losing a limb is one of the most devastating things that can happen to a person. We know that with the appropriate surgical care, appropriate rehabilitation, and the appropriate prosthesis, the majority of people who don't have a lot of other co-morbid diseases can return to an active, productive lifestyle. By not providing prostheses, insurance companies relegate these people to either taking out loans against their house or going without.

"If you are going to take somebody's leg or somebody's arm, then you should provide a replacement for it. I think it is just the right thing to do. And more than just the right thing to do, it is right in terms of benefits to our society."

How Goes the Battle?

Fighting the good fight is a daunting task as a quick look at Sheets' busy schedule and timeline of the movement will attest.

The ACA launched the national campaign in 2006, Sheets reports, going state by state to introduce legislation. In the fall of 2006, the ACA began conversations with potentially supportive legislators in Congress. "Although mid-term elections shook things up a bit, support has grown along with the number of states that have passed or are attempting to pass parity laws," she says.

"In 2007, we started to work on the language, and what we've been doing in 2008 so far is finalizing the statute language required for the federal level and identifying lawmakers to co-sponsor the bill."

The federal bill introduced in March was authored by Representative Robert Andrews (D-NJ), with Representatives George Miller (D-CA), Todd Platts (R-PA), Mario Diaz-Balart (R-FL), and Lincoln Diaz-Balart (R-FL) signing on as original co-sponsors. Rep. Andrews chairs the Health, Employment, Labor, and Pensions Subcommittee, and Rep. Miller chairs the Education and Labor Committee and serves on the Natural Resources Committee.

The representatives' opinions are strong and clear:

"I strongly support the Prosthetic Parity Act, which calls for coverage for prosthetics under private group health plans on par with Medicare, Medicaid, VA, and federal employee's benefits," Rep. Lincoln Diaz-Balart says. "It is unacceptable that Americans who have health insurance cannot receive prosthetic reimbursement if they face a catastrophic accident."

The ACA anticipated that the bill would go into the Education and Labor Committee, and since Rep. Andrews chairs the House Subcommittee for Education and Labor, his position as lead sponsor is a great advantage, notes Sheets.

Since December, she says, the advocacy office has been reaching out to legislators-alerting states that had members of that key committee, following up with phone calls, and setting up meetings in district offices as well as in Washington DC congressional offices.

From here, Sheets anticipates, a hearing could happen in the spring or early summer.

Strategy in Action

"At the time of our initial stakeholders meeting," says Rossbach, "it was decided that the best way to go was working together, state-by-state."

While getting a federal parity bill introduced is certainly pivotal, Rossbach says continuing to focus on the state bills is essential. Not only does it help the states to achieve parity, but it also provides additional support and fuel for getting the federal initiative passed. "We are also far more likely to get state bills passed more quickly than a federal one. We anticipate having 14 [state] bills introduced in 2008, and we are looking for an additional ten in 2009."

What will a national bill do that state bills can't or won't?

"One of the aspects unique to insurance law," explains Cain, "is that federal law exempts self-funded company plans under the Employee Retirement Income Security Act (ERISA). So if you pass a parity law in your state, it affects 50 to 75 percent of the people who have insurance, but you miss people who work for very large employers. In order to cover all people who have insurance, you need to have both federal and state legislative reform."

A federal parity bill will not preempt existing state parity laws, but it will set a minimum standard and cover all the ERISA groups nationwide. It will also add coverage for those states that do not have state legislation in place. Individual states will still be free to pass a law with richer benefits, says Cain.

The insurance companies claim that if prosthetic coverage were added at the parity level, premium costs would skyrocket so wildly that no one could afford insurance, Sheets reports. However, she points to four separate independent surveys confirming that the additional cost per person insured would increase by only 12 to 35 cents per month. Additional data suggests that there would also be a savings to the insurance companies and the government by preventing costly secondary conditions and keeping people in the workforce and paying taxes.

Even in the face of such evidence, the insurance companies continue to protest, pointing to the danger of setting a precedent and opening the doors to a set of less-worthy mandates, regardless of the merits of this one.

Sheets finds this frustrating. "We work hard to collect information. We try to paint a very specific picture about what this bill means to the people in your state. What is the cost, etc.? The insurance companies use the same generic rhetoric in every single hearing, and very few lawmakers seem to challenge them on any of it."

Some lawmakers, indeed, are so firmly opposed to mandates that they "will absolutely not even look at the merits of our very different bill," she notes. "But that's our job-to make the case effectively enough so that people can't ignore it."

Rossbach uses a convincing strategy with legislators and doubters. She tells them simply to go home and look at the fine print in their own health insurance policies. If there's not an exclusion for prostheses, there's probably a lifetime cap that falls into the laughably absurd range; e.g., $1,500 with a $200 deductible, which one 50-year-old family wage-earner found on his policy following a transfemoral amputation.

Cain points to a similar survey done by his group in Colorado, which asked, "If you had an accident, would your insurance company pay for your prosthesis?"

"Of those initially surveyed, 100 percent said yes, of course it would-but only 20 percent of them actually had coverage when they checked their policies," Cain says.

What about Orthotic Parity?

Sheets explains that although the state bills have provided them with much data that is specific and detailed about access to prosthetic care, they have very little that is specific to orthotic care. This led to a tough decision in crafting the language for the  federal bill.

"There is poor understanding of what orthotics' means, and who gets it. Obviously prosthetic care is specific to amputees, while orthotic care is not. Federal lawmakers were concerned about the difficulty of championing this as a bill about amputee healthcare when there would be so many people who would be accessing and utilizing an orthotic benefit who aren't indeed amputees," Sheets says.

Hence the problem of how or even if it was appropriate to design a bill that provided orthoses only for amputees.

Sheets recognizes that including orthotics in the bill would create a significant additional hurdle. "Lawmakers recommended that we first focus on prosthetic care because that is the largest cost item, absolutely cost-prohibitive to an amputee if they're denied prosthetic care, so that's what we decided to do. Sometimes, in order to be politically savvy you have to make some tough decisions."

What Are the Chances of Passing the National Parity Bill?

"Until it's actually done, you never really know," says Rossbach, "But we certainly are very hopeful..."

Cain is also optimistic. "No matter who is president in 2009, there's going to be healthcare reform. In the legislative year ahead, major reform is not going to be possible. But legislation seen as tweaking' or making important small changes might be something that could happen this year. I think we have a very good chance of being able to do this well in 2008."

Sheets concurs that the time is right to move forward. "It's clear that there's going to be some pretty major overhaul of the healthcare system in the not-so-distant future," she says. "We want to make sure that there are legal protections at the federal level for prosthetic care, so when this large-scale debate happens, specialized care doesn't get lost in the shuffle. If you have federal legal protection in place, it keeps the issue in focus."

"If we pass it this year, great!" says Sheets. "We'd have a large party. Yes, it could happen because this is an easy piece of legislation to support. But do I hold my breath on that? No.

"I've been in the game long enough to know that your first year is a lot of education and a lot of building, and that's okay. If it doesn't pass the first year, you didn't fail. You're in a much better place than when you started, and you'll be in an even better place when you try again next year."

How You Can Help

"The thing we really need from the prosthetic community is for them to make all their patients aware of the ACA-and that we are leading this initiative that will benefit so many of them," Rossbach says. "We need amputees, prosthetists, and manufacturers to support us by becoming individual members. If so, we would be much more easily able to fund this initiative."

Cain advises: "Make sure your prosthetist organizations are involved. Motivate patients to become involved and to let their voices be heard. This is also a good time to get out your checkbook!"

A budget of $325,000 would allow the ACA to be more effective, Rossbach believes, but this is far beyond the fundraising goals achieved so far. Experienced at making do with available resources, the ACA maintains a minimal staff of three people in its Washington DC advocacy office who also initiate, fuel, and support the efforts of grassroots campaign activists in 29 states.

"We have a mailing database of only about 40,000 members. If we had 1.9 million individual members paying $30 dues, then we'd be able to fund this effort," Rossbach points out.

The prospect of pursuing its goal can sometimes be daunting, admit Rossbach and her lieutenants in this epic struggle. "It's an expensive proposition for a little teeny-weenie organization, and I sometimes feel like we are like David and Goliath.

"But you know," she adds with a twinkle, "David won."

Judith Philipps Otto is a freelance writer who has assisted with marketing and public relations for various clients in the O&P profession. She has been a newspaper writer and editor and has won national and international awards as a broadcast writer-producer.