Patients and Fortitude

Ralph Waldo Emerson once said, “Patience and fortitude conquer all things.” However, patience is at a critically low level in the home care community right now. So what do we have a good supply of?

Patients.

Millions of patients have a medical need for home care therapies, equipment and services. These patients and their families are the face of home care.

At AAHomecare’s June Washington Fly-In, about 150 providers, patients and manufacturers participated in more than 250 meetings in congressional offices on Capitol Hill. One of the key “asks” was support for the Home Oxygen Patient Protection Act of 2006, H.R. 5513. This bill would repeal the provisions of the Deficit Reduction Act that force Medicare oxygen users to assume ownership and responsibility for their equipment after 36 months.

Significantly, a recent Morrison Informatics report commissioned by the association shows that only 28 percent of the total cost of their oxygen therapy can be attributed to the actual equipment, while 72 percent is comprised of the cost of services, operations, regulatory compliance and other expenses.

The rallying cries delivered by fly-in participants during their Hill visits highlighted this crucial service component. Their messages were reinforced by the Home Oxygen Patient and Technology Fair held in one of the congressional office buildings during the lobby day. Members of Congress and their staffs joined home oxygen patients and their respiratory therapists in the Rayburn House Office Building to hear their stories and see first-hand the technologies that provide life-sustaining oxygen in patients’ homes.

Nine device manufacturers also brought samples of their equipment, showing a wide range of modern oxygen technologies and modalities. These included various lightweight compressed gas cylinders with pulse-dose oxygen delivery devices; traditional, transfilling and lightweight portable oxygen concentrators; and modern stationary and portable liquid oxygen systems.

On that day, providers across the U.S. also encouraged oxygen patients to participate in a congressional telephone call-in campaign to their federal representatives to voice concerns about the DRA changes and ask members of Congress to sign onto H.R. 5513.

During the morning briefing before heading to the Hill, AAHomecare Chairman Tom Ryan reminded providers that a day of lobbying is important — but that follow-up and follow-through also are vital. What can all home care providers do to stay in the ring during this critical fight?

• Always remember the faces and voices of the patients we serve. They are the reason we fight. Help to paint this picture for your legislators.
• Remember that members of Congress will be back in their districts in August to campaign for re-election. Keep up the grassroots momentum by inviting your member of Congress to visit your home care facility or accompany your employees on patient visits.
• Meet with your congressional members whether in Washington, on the telephone or at a district meeting back home, then follow up with the member and staff to make sure they fully understand the issues. If he or she commits verbally to sign onto a bill, remind them to contact the bill sponsor. AAHomecare will follow up with congressional offices as well, so please let us know if there are specific follow-through steps we can take with individual members and Hill staffers.
• Continue to keep up with critical updates on issues and bills. Also, stay tuned for results of the Oxygen Stakeholders Summit that was held June 7-9, 2006, at the headquarters of the American College of Chest Physicians (ACCP) in Northbrook, Ill.

As we learned at our fly-in last month in Washington, our patients can be great advocates for stronger home care policy. So, with apologies to Emerson, home care advocates can borrow his old line with a new twist: “Patients and fortitude conquer all things.”

Ashley Ridlon is manager of policy and communications for the American Association for Homecare, Alexandria, Va. With an MS in Gerontology from King’s College London and a BS in Medical Sociology, Ashley came to AAHomecare from the hospice sector in 2004. For more information about the association, call 703/836-6263 or visit www.aahomecare.org.