AKF Advocacy Newsletter - May, 2011

National Kidney Month

In observance of National Kidney Month and World Kidney Day in March, the American Kidney Fund hosted its 1st annual Kidney Health Fair on the Hill and its 2nd annual World Kidney Day Advocate Training Fly-In to raise awareness among Members of Congress and the Capitol Hill community about kidney disease and its risks.
 
The inaugural Kidney Health Fair on the Hill, co-sponsored by the Congressional Kidney Caucus, was held March 3 in the Rayburn House Office Building. This event included representatives from the American Diabetes Association and the American Heart Association to promote prevention and awareness of heart disease and diabetes, the two major risk factors associated with kidney disease.  Rep. Jim McDermott of Washington spoke powerfully about the importance of kidney health and kidney disease prevention. Attendees participated in free kidney disease risk assessment screenings and interactive games including the Nintendo Wii Fit.  AKF screened and educated more than 100 members of the Capitol Hill community.

The following week, AKF hosted seven patient-advocates from around the country in Washington, D.C. for World Kidney Day activities.  The 2011 AKF Advocates were:
 
• Eric Dolby, Raleigh, N.C.

• Jason Hershey, Muskegon, Mich.

• Bernard Ofori-Atta, South Holland, Ill.

• Phillip Atkins, Gaithersburg, Md.

• Patricia Meyers , Collinsville, Ill.

• Elizabeth Smith, Cincinnati, Ohio

• Olivia Fox, Annapolis, Md.

The events included an advocacy training session, a reception co-sponsored by AKF and other patient organizations, and a day on Capitol Hill.  On the Hill, patient-advocates conducted 21 meetings with their Congressional offices on issues including the transition adjuster and patient access to anemia drugs.  The Congressional reception on Capitol Hill was attended by several Congressional leaders including Congressional Kidney Caucus Chair Rep. Jim McDermott, Rep. Shelley Berkley of Nevada, Rep. Tom Marino of Pennsylvania, and Rep. Dave Camp of Michigan, Chairman of the House Ways and Means Committee.  Two players from the Washington Redskins also attended.

CMS Eliminates the Transition Adjuster

The Centers for Medicare and Medicaid Services (CMS) implemented a new payment system for dialysis care in January, 2011.  As part of that process, CMS instituted a 3.1 percent rate reduction (‘transition adjuster’) on reimbursements to dialysis facilities in 2011.   This rate reduction was based on a CMS estimate that only 43 percent of dialysis facilities would choose to be paid under the new system in 2011.  The adjustment assumed the remaining facilities would opt to transition to the new system by 2014.  Ultimately, nearly 100 percent of dialysis facilities chose the new system in 2011, vastly exceeding the CMS projection.
  
The American Kidney Fund and members of the kidney care community advocated directly with CMS and Members of Congress on this issue.  In January, we sent a letter to CMS and Congressional leaders asking that the adjustment be corrected based on actual data rather than estimated data.  We also held 22 meetings with Congressional offices on the issue.  As a result of efforts from AKF advocates and the kidney community, CMS is eliminating the 3.1% transition adjuster in the ESRD PPS. The agency said it would revise its transition adjustment to reflect the actual number of dialysis clinics that elected to receive payment under the new bundle. This results in a 0 percent adjustment for renal dialysis services provided April 1 through the end of this year.
 
This is a win for patients and the kidney care community. Dialysis facilities will no longer be faced with tough choices that could have sacrificed the quality of care they provide to kidney patients in order to offset unnecessary payment reductions imposed by the transition adjuster.

CMS Maintains Coverage of Anemia Drugs

On March 16, in response to a public request, the Centers for Medicare and Medicaid Services (CMS) announced it would not change its coverage policy for ESA (erythropoietin stimulating agent, also known as EPO) use in patients with chronic kidney disease (CKD), including those on dialysis, until further analysis is completed.  The U.S. Food and Drug Administration (FDA) and CMS held hearings over several months to obtain feedback from patients, advocacy organizations and members of the kidney care community on the benefits of ESA use.  CMS will maintain its current reimbursement policy for ESAs until a final decision is announced in the coming months.
  
AKF testified before FDA and CMS on this issue, stressing that ESAs should remain accessible for patients who need them and that doctors should retain the ability to prescribe the medication that promotes the best health outcomes.  Click here to read AKF’s comments on this issue (PDF).
 
This is a win for patients, because they will continue to have access to these medications, which in most instances allow them to have a better quality of life.

Kidney Caucus Adds Leadership

Thanks to efforts of the kidney care community and patient advocates, two Republican Members of Congress have stepped up to serve as leaders of the Congressional Kidney Caucus.  Rep. Tom Marino of Pennsylvania is a kidney cancer survivor who became interested in the Congressional Kidney Caucus after attending the World Kidney Day Reception last month.  Rep. Marino will serve as the Republican Co-Chair along with Rep. Jim McDermott of Washington.  In addition, Rep. John Fleming of Louisiana will serve as a Vice Chair the Caucus along with Rep. Jesse Jackson Jr.

This is great news for the kidney care community because we can now begin to engage the Caucus to be active on legislation and issues affecting individuals with kidney disease.  Click here to visit the new Congressional Kidney Caucus website.

AKF Policies and Issues

AKF will continue efforts to promote kidney disease awareness and advocate on issues that impact patients with CKD and on dialysis.

Click here for a list of issues that AKF will be monitoring this year.

AKF and AAKP Partner to Advocate for Patients

The American Kidney Fund frequently partners with fellow kidney patient organizations, working together to advocate on behalf of kidney patients. 

On Monday, June 6, 2011, the American Association of Kidney Patients (AAKP), in partnership with the Renal Physicians Association (RPA), will hold meetings with Congressional offices in Washington, D.C. to help present the patient point of view to representatives in Congress. AAKP has reached out to the American Kidney Fund in search of volunteers to travel to Washington, D.C.  If you are from the following states and want to participate in this effort, please contact the Government Relations team at AKF at  (800) 638-8299.  States targeted:   Arizona, Connecticut, Georgia, Louisiana, Nevada, North Carolina, Pennsylvania, Tennessee, Texas, and West Virginia.  AAKP will reimburse those selected for airline fares and hotel accommodations, and all those selected will be given training prior to visiting Congressional offices.

Upcoming Events

Steps that Count
Fundraising Walk and Kidney Health Event
June 11, 2011
Nationals Park
Washington, DC
Click here for more information and to register.
Click here for a list of upcoming kidney health screenings.