By John A. Schall

Every year it seems there is a lot of activity in Washington on healthcare issues – although most of the time there is a lot more talk than action. The real challenge is how to make sure the voices of real patients get heard in the sometimes heated debates where doctors, health providers, insurance companies, and hospitals tend to have much louder voices – often because they have a lot more money!

That is why AAKP leaders reached out to us at Jefferson Government Relations in Washington, DC, to help AAKP influence policy decisions on behalf of kidney patients across the country.

AAKP’s Policy Priorities

While there are a number of national healthcare issues that are certainly important, AAKP has decided to focus its efforts on four public policy priorities:

1. Improving the quality of care for kidney patients.

2. Ensuring that home dialysis is an option as a regular standard of care.

3. Extending coverage of immunosuppressive drugs.

4. Increasing the number of organ donations.

Quality of care:

It may come as a surprise to many Americans, but the U.S. has fallen behind the industrialized world when it comes to care for those suffering from kidney failure. In fact, the U.S. ranks last among seven industrialized nations. For Americans undergoing kidney dialysis, the first year mortality rate is much too high at 22 percent – compared to 16 percent in Europe and only nine percent in Japan.

In many ways, kidney care today is where the nursing home industry was 20 years ago. The uneven quality in kidney treatment and dialysis centers now is analogous to the unacceptable conditions seen in nursing homes then. Clearly, quality improvements are badly needed, such as greater use of fistula access, treating depression, monitoring nutrition and better training for staff.

Home dialysis:

A small number of patients prefer to receive home dialysis. AAKP has always believed that medical treatment decisions should be made by the patient and the doctor. Unfortunately, Medicare pays for only three dialysis sessions per week, which limits the options for some patients.

A Medicare demonstration program extending coverage to home dialysis could document the home dialysis and from more frequent dialysis. Home dialysis should be an available option for those patients who want it.

Immunosuppressive drug coverage:

For kidney transplant recipients under age 65, Medicare only covers immunosuppressive drugs for about three years. Too many low-income people cannot afford to continue taking these critical life-saving drugs after Medicare coverage runs out.

It’s time to provide lifetime coverage for immunosuppressive drugs through Medicare. Doing so will reduce the number of graft failures and reduce the need for dialysis and kidney re-transplants. In the long run, both money and lives will be saved.

Organ donations:

Today, 60,000 Americans are waiting for a kidney transplant. About one in four hemodialysis patients between the ages of 18 and 65 are on the kidney transplant waiting list. Shockingly, more than 8,000 people die each year because of the lack of available organs.

What’s more, organ transplants are not equitable. Transplantation rates are higher for younger, healthier, better-educated and higher income patients. Rates of transplant are significantly lower for black and Asian patients than they are among whites. And kidney transplant wait-list times vary considerable in different geographical regions of the United States.

AAKP supports modernizing incentives for organ donations to meet the needs of patients requiring a kidney transplant, including studying the feasibility of financial incentives (such as travel expenses for kidney donors, funeral expenses for families of deceased donors, etc.) to increase the number of organ donations.

Major Bills in Congress

More than a dozen bills relating to chronic kidney disease (CKD) have been introduced in the 109th Congress. AAKP has been actively pushing for enactment of several of these bills.

S. 1356

Senators Chuck Grassley (R-IA) and Max Baucus (D-MT) introduced S. 1356, the Medicare Value Purchasing Act, which would create quality payments under Medicare for physicians and practitioners, hospitals, health plans, skilled nursing facilities, home health, and end-stage renal disease facilities. The bill would establish financial incentives that promote quality care and better value in the Medicare payment system.

As Senator Grassley said, “Medicare pays the same amount regardless of quality of care. We need to better align financial incentives to help promote quality and to achieve better value.” He believes Medicare should provide “fair payment for good clinical management.” Tying payments to quality and accountability is just good common sense, and AAKP was one of the earliest supporters of S. 1356.

H.R. 3096:

Rep. Jim McDermott (D-WA) addressed the issue of home dialysis head on and introduced H.R. 3096, the Kidney Patient More Frequent Dialysis Quality Act of 2005. The bill would direct the Secretary of Health and Human Services to publish final regulations for equivalent per treatment prospective payment rates for more frequent hemodialysis treatments furnished to qualified individuals at home and in a facility, and prospective payment rates for in-facility training for more frequent hemodialysis.

In other words, Medicare would cover more than three dialysis session per week. The bill is very much in keeping with AAKP’s priority to make home dialysis a viable option for patients who want to receive their treatment at home.

H.R. 2051:

Rep. Dave Camp (R-MI) introduced a very important bill, H.R. 2051, the Comprehensive Immunosuppressive Drug Coverage for Transplant Patients Act of 2005. Senator Mike DeWine (R-OH) introduced a companion bill in the Senate, S. 173. The bill would eliminate the 36-month cap on immunosuppressive drug coverage for those eligible for the ESRD program.

Without immunosuppressive drugs to keep kidney transplants from being rejected, many patients find themselves right back where they started: in need of a kidney. This circular cycle of care is costing taxpayers a lot of money and putting thousands of lives on the line.

As Congressman Camp says, “With the severe shortage of organs and continued growth in the transplant waiting list, it does not make sense to risk organ rejection due to a lack of access to immunosuppressive medications. Maintaining Medicare coverage of immunosuppressive medications would be far less costly than resuming payment for kidney dialysis or from incurring the cost of re-transplant.”

That is why AAKP has been encouraging Members of Congress to co-sponsor H.R. 2051.

Other bills:

Legislation has also been proposed for other purposes related to ESRD. H.R. 1298 and H.R. 4927 have been introduced to ensure that the ESRD program keeps pace with the rest of Medicare. Called the Kidney Care Quality and Improvement Act of 2005, H.R. 4927 would expand patient education to those at risk for kidney disease to help them better manage their health, and it would create a quality outcomes-based pilot project – ideas that AAKP supports. The bill would also provide an annual update framework for the composite rate – an update mechanism that would allow payment rates to keep pace with technology and cost changes.

Other proposed bills would give tax credits to individuals who donate life-saving organs; provide Medicare coverage for kidney education services; and extend the Family and Medical Leave Act to those making a living organ donation.

The New Congress in 2007

The 109th Congress saw no shortage of good ideas to improve kidney care services. But unfortunately none of the bills made it out of committee.

But the bills in 2006 did set the stage for possible action by the newly elected Congress in 2007. All the proposed bills died with the adjournment of Congress at the end of 2006 and will need to be reintroduced in the new 110th Congress beginning this month. Many of the bills have bipartisan support and lay the groundwork for possible action this year. AAKP will be working very hard to see to it that our priorities of quality improvement, home dialysis, immunosuppressive drugs, and organ donations are reflected in any bill that gets passed.

John A. Schall, MPP, is the vice president at Jefferson Government Relations.

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