The idea of involving HME consumers in industry efforts to influence public policy has been discussed for years. Two years ago, the American Association for Homecare (AAHomecare) decided to open its June Legislative Policy Conference to consumers who were sponsored by providers and manufacturers.

The evaluations were unanimous: members of Congress and their staffs were far more attentive when consumers made the pitch. Alas, the industry saw the outcome but dropped the ball, and it took another 2 years to again involve consumers as advocates for industry issues.

When CMS issued its policy “clarification” on payment policies and coverage guidelines for power wheelchairs, leaders from the industry took the time to educate savvy consumers on how the “clarification” would deny access to much-needed personal mobility systems. The results were amazing.

Within weeks, a coalition of consumer organizations, led by former CMS official Henry Claypool, joined together to form the ITEM Coalition (Independence Through Enhancement of Medicare and Medicaid). More than 40 consumer groups signed a letter stating their concerns about the impact of CMS’ actions and demanding that the “clarification” be rescinded immediately. It was!

A few weeks later, CMS hosted a listening session to discuss the issue. The auditorium in Baltimore was filled with consumers and more than 375 participated via teleconference. Several CMS staffers commented on the “overwhelming consumer interest in this issue” and said that it will cause the agency to move “very cautiously in developing corrective action.”

There are lots of people from various industry groups taking credit for the rescission. Anyone who knows how Washington works will tell you that it was the strong consumer interest that turned this struggle around. This issue is far from resolved, but CMS and Congress now know that consumer groups are very interested—and this bodes well for the HME industry.

The big question is: What will happen next? The industry owes a huge debt to consumers (individuals and organizations), and that debt must be paid quickly if consumers are going to be counted on to assist us in future fights (competitive bidding, Federal Employees Health Benefits Program-based pricing). Repaying that debt means going to the consumer groups now and asking them what the industry can do to advance their political and regulatory agendas.

Before they even ask, everyone who is part of the HME services industry must be ready to give their moral, political, and financial support to legislation such as the Medicaid Community Attendant Services and Supports Act (MiCASSA), and to defeat efforts to weaken the Americans with Disabilities Act. The HME industry must also be ready to force Congress and the Administration to live up to their promises to ensure access to rehabilitation and assistive technology that transforms tax users into tax payers.

The acts of a few scoundrels have created an environment that ensures that the HME services industry will be the target of CMS and Congress for a long time to come. Consumer groups and their issues often get lip service and false promises, but little substantive attention. However, if the industry forms a true and equal partnership with consumers, both groups can prevail.

Consumers provide the industry with a way of telling policymakers about the good done by the HME services industry. The HME industry can help consumer groups carry their messages to policymakers in a way that gets attention and action. How many other win-win opportunities like this has the industry experienced?

Hundreds of thousands of dollars go into the pockets of self-proclaimed experts who, so far, have delivered only platitudes and failed promises. The industry is no better off today than 2 years ago. A fraction of that sum (if given to consumer groups) can advance the agenda of both sides of the partnership.

Cara C. Bachenheimer, JD, is vice president of government relations for Invacare Corp, Elyria, Ohio. David T. Williams is a consultant for political and legislative strategy.