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In this issue:
DPC Has a New Home!
World Kidney Day Advocacy Efforts End With Policy Win for Dialysis Patients
World Kidney Day Activities Across the Country
DPC Recognizes National Minority Health Month
DPC Joins the National Quality Forum
Affymax Wins Approval of New Drug for Anemic Kidney Patients
April Schedule of Events
World Kidney Day Advocacy Efforts End With Policy Win for Dialysis Patients
World Kidney Day Activities Across the Country
DPC Recognizes National Minority Health Month
DPC Joins the National Quality Forum
Affymax Wins Approval of New Drug for Anemic Kidney Patients
April Schedule of Events
DPC Has a New Home!
On April 2nd, DPC moved to a new office to accommodate our growing staff and expanded efforts to further our mission of improving the quality of life of all dialysis patients. Our new home is just blocks from the U.S. Capitol Building and across the National Mall from the Department of Health and Human Services (HHS), which will help us increase our legislative and regulatory impact for kidney and dialysis patients.
We are excited to continue our work from our new office. You can find our updated contact information below:
Dialysis Patient Citizens
122 C Street, N.W.
Suite 510
Washington, DC 20001
Please note, our website, phone number, fax number and toll free phone number remain the same.
On April 2nd, DPC moved to a new office to accommodate our growing staff and expanded efforts to further our mission of improving the quality of life of all dialysis patients. Our new home is just blocks from the U.S. Capitol Building and across the National Mall from the Department of Health and Human Services (HHS), which will help us increase our legislative and regulatory impact for kidney and dialysis patients.
We are excited to continue our work from our new office. You can find our updated contact information below:
Dialysis Patient Citizens
122 C Street, N.W.
Suite 510
Washington, DC 20001
Please note, our website, phone number, fax number and toll free phone number remain the same.
World Kidney Day Advocacy Efforts End With Policy Win for Dialysis Patients
In recognition of World Kidney Day, DPC Patient Ambassadors and Board Members came to Washington, DC to meet with their Representatives and Senators to discuss issues critical to the kidney community. Representing more than 25 States, DPC advocates joined DaVita clinic teammates and NKF advocates to bring awareness and education about kidney disease to Capitol Hill.
Shortly after our event ended, DPC learned that the Department of Health and Human Services was clarifying an important policy that would provide access for dialysis patients to purchase private insurance in the new health exchanges. DPC and our advocates across the country have been working hard for months to secure this protection, known as Medicare Secondary Payer (MSP), and we are thrilled to announce this major accomplishment.
In meetings with Members during our event, advocates also pushed for cosponsorship and passage of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011(S.1454/H.R. 2969), legislation that would extend Medicare coverage of anti-rejection drugs for the life of the transplant, instead of the current 36 months of coverage. After our meetings, Senator Barbara Boxer (CA), Congressman Robert Turner (NY), Congresswoman Kathy Castor (FL) and Congressman Steve Cohen (TN) signed on as cosponsors of this common-sense legislation.
During our time in DC, DPC also co-hosted a World Kidney Day Congressional Reception for Members of Congress and Hill staff that included appearances by DPC advocates, members of the kidney community and a player for the Washington Redskins.
We want to thank everyone who participated in this year’s enormously successful 2012 World Kidney Day Fly-In. If you are interested in being more involved with DPC and participating in events like this in the future, we encourage you to apply to our Patient Ambassador program.
World Kidney Day Activities Across the Country
DPC Patient Ambassadors held numerous events across the country to mark World Kidney Day this past month and to raise awareness about kidney disease. We love to recognize the hard work and dedication of our Ambassadors so here is a small sampling of the activities.
Flossie Lewis, a Patient Ambassador in Mississippi, was a speaker and facilitator at the Impact Day of Service. She spoke about and provided information on DPC, kidney disease, organ transplants and the Mississippi Organ Recovery Agency. Tom Fossa in Oklahoma hosted a facility tour for the Mayor of Claremore, OK, that included other important members of the community.
Angela Lattimore of South Carolina and Cliff Van Winkle of Southern California wrote letters to the editor of their local newspapers, highlighting the risk factors for kidney disease and the importance of getting regular kidney screenings. At his facility in South Carolina, James Ravenell hosted an open house where he passed out educational information to patients and family members. And Thomas Jones of Memphis, TN participated in the World Kidney Day event at Baptist Hospital in Memphis, where he raised awareness about kidney disease and DPC.
Thanks to all of our Patient Ambassadors for all of their hard work in bringing attention to National Kidney Month and World Kidney Day. Do forget to let us know what you did to mark World Kidney Day as we would love to recognize more of your activities. Please send us an email at dpc@dialysispatients.org or send the information to 122 C St. NW Suite 510, Washington, DC 20001.
DPC Recognizes National Minority Health Month
Following on the heels of National Kidney Month and World Kidney Day, April marks National Minority Health Month. It is important to remember that health disparities do exist and the kidney community is no exception.
In the most recent United States Renal Data System (USRDS) Annual Data Report, it was noted that the prevalence of end stage renal disease (ESRD) is 4.1 times greater in the African American community, 2.1 times greater in the Native American population, 2 times greater for the Hispanic American population and 1.6 times greater for Asian Americans, when compared to the U.S Caucasian population.
Similar numbers show that African Americans and Hispanic Americans make up 35% and 19% of the kidney transplant waiting list while only representing 13% and 16% of the total U.S. population, respectively. Understanding and acknowledging that health disparities exist is a first step towards reducing these gaps and ultimately eliminating them. You can find more information on Kidney Health Disparities here.
To raise awareness about this critical issue and its impact on the kidney community, DPC will be hosting a Congressional Briefing on health disparities on April 19. The event, cohosted by the American Society of Nephrology (ASN) and the National Urban League, will highlight both the patient and professional perspective on this issue in the kidney community and greater population. The event will be hosted by the Congressional Black Caucus, Congressional Hispanic Caucus, Congressional Asian Pacific American Caucus and the Congressional Kidney Caucus.
Following this year’s National Minority Health Month theme, Health Equity Can’t Wait. Act Now in Your CommUNITY!, we encourage you to connect with leaders in your community to address this important issue. Additional information from the on National Minority Health Month from the Office of Minority Health can be found here.
DPC Joins the National Quality Forum
DPC was recently accepted as a member of the National Quality Forum (NQF).
NQF is a nonprofit organization that operates under a three-part mission to improve the quality of American healthcare by building consensus on national priorities and goals for performance improvement and working in partnership to achieve them; endorsing national consensus standards for measuring and publicly reporting on performance; and promoting the attainment of national goals through education and outreach programs. NQF's membership includes a wide variety of healthcare stakeholders, including consumer organizations, public and private purchasers, physicians, nurses, hospitals, accrediting and certifying bodies, supporting industries, and healthcare research and quality improvement organizations.
NQF is a nonprofit organization that operates under a three-part mission to improve the quality of American healthcare by building consensus on national priorities and goals for performance improvement and working in partnership to achieve them; endorsing national consensus standards for measuring and publicly reporting on performance; and promoting the attainment of national goals through education and outreach programs. NQF's membership includes a wide variety of healthcare stakeholders, including consumer organizations, public and private purchasers, physicians, nurses, hospitals, accrediting and certifying bodies, supporting industries, and healthcare research and quality improvement organizations.
As a new member of the organization that endorses measures for the Medicare ESRD Quality Incentive Program (QIP), DPC is excited to elevate its voice in support of efforts to improve the quality of care and quality of life for all dialysis patients.
Affymax Wins Approval of New Drug for Anemic Kidney Patients
In March, the Food and Drug Administration (FDA) announced approval of a new drug to treat anemia in patients with kidney disease. Omontys, known as peginesatide, was cleared for patients with chronic kidney disease on dialysis and is intended to be used once a month. Until now, the only drug approved to treat anemia in ESRD patients was Amgen’s Epogen. Earlier this year, DPC Board Member Eric Edwards testified before the FDA regarding the importance of anemia management and its impact on patient quality of life.
More information on the new drug and the FDAs decision can be found here.
April Schedule of Events
We are excited to announce the list of DPC and kidney community events for the month of April. Please let us know if you have any questions about DPC events or activities, and we hope you enjoy the month!
April is National Minority Health Month
April 12: PALS Call @ 2:00 PM Eastern
April 19: DPC Hosted Congressional Briefing on Health Disparities
April 25: Patient Ambassador Monthly Call @ 2:00 PM Eastern (Open to Patient Ambassadors Only)
April 25 to April 26: National Renal Administrators Association (NRAA) Spring Meeting in Washington, DC (Event Information)
April 28 to May 1: American Society of Pediatric Nephrologists Meeting in Boston, MA (Event Registration and Information)
April 29 to May 2: American Nephrology Nurses Association (ANNA) in Orlando, FL (Event Registration and Information)
April 19: DPC Hosted Congressional Briefing on Health Disparities
April 25: Patient Ambassador Monthly Call @ 2:00 PM Eastern (Open to Patient Ambassadors Only)
April 25 to April 26: National Renal Administrators Association (NRAA) Spring Meeting in Washington, DC (Event Information)
April 28 to May 1: American Society of Pediatric Nephrologists Meeting in Boston, MA (Event Registration and Information)
April 29 to May 2: American Nephrology Nurses Association (ANNA) in Orlando, FL (Event Registration and Information)