Who can forget the power of Christopher Reeve’s many testimonials on Capitol Hill? With a rare combination of disability and celebrity status, Reeve galvanized lawmakers with his presence and his message. Whether they agreed or not with his calls for increased government spending, you could almost see the indifference melt away as Congressional countenances transformed from jaded to attentive.

Reeve spoke with authority because he spoke from experience. Do noncelebrity consumers garner the same attention? Perhaps not, but there is a lot of anecdotal evidence to suggest that members of Congress and their staffs pay far more attention when consumers make the pitch. After all, consumers are living, breathing examples of the myriad benefits of home care.

Two and half years ago, the American Association for Homecare opened its June Legislative Policy Conference to consumers who were sponsored by providers and manufacturers. The event showed the potential power of consumer involvement, but it was not until CMS issued its policy “clarification” on power wheelchair payment policies/coverage guidelines that all that clout was cashed in.

As Cara C. Bachenheimer, JD, and David T. Williams documented in their May 2004 “Our Turn” column, consumer groups joined together to form the ITEM Coalition (Independence Through Enhancement of Medicare and Medicaid). With the help of a letter signed by ITEM members, the restrictive clarification was rescinded immediately. Some well-placed financial support for consumer groups in 2005 may again yield dramatic results.

In another example, Sen Mike Crapo (R-Idaho) helped to organize the first US chronic obstructive pulmonary disease (COPD) coalition meeting 1 year ago. The conference attracted top physicians in pulmonary medicine, respiratory care associations, HME providers, manufacturers, and 30 oxygen patients. The conference was not perfect (travel problems marred the trip for many patients), but it was a good start. Coordinating disparate groups is never easy, but as the ITEM Coalition showed, the results can be rewarding.

In addition to consumer involvement, experts in this month’s Washington Watch Round Table (page 26) agree that evidence-based data is crucial if the industry is to go beyond anecdotes and scientifically prove the worth of home care. Recall that before the recent Muse & Associates study, providers were looking at average sales price + 6% with no dispensing fee for respiratory medications. As we know, CMS decided to go with a $57 fee instead of the $68.10 recommended by the study. Without the study, however, it could have been worse.

Will evidence-based data win the day? There is much skepticism. At least one of our Washington Watch Round Table participants believes that when money is the bottom line (such as in state Medicaid plans), the intense pressure to reduce costs may ultimately cause decision-makers to disregard science. The paradox is that spending money upfront on home health care usually results in considerable savings down the road.

Fortunately, home care has common sense on its side. With the help of consumers, evidence-based data, and a willingness to get involved, even bureaucrats may one day see these long-term benefits.

Greg Thompson
gthompson@medpubs.com