National Meeting Focuses on Patient Engagement, Medical Advances and Public Policy
Tampa, FL -The American Association of Kidney Patients (AAKP) celebrated its 45thyear of patient advocacy at their recent National Patient Meeting in Las Vegas, NV. The meeting was highlighted by three days of robust patient and exhibitor participation, news-making announcements from product and service providers and a special appearance by Food Network star Chef Aaron McCargo, Jr., host of the highly popular show Big Daddy’s House. The meeting drew hundreds of patients and family members and featured nationally renowned speakers from across the medical and kidney community.
AAKP also introduced a newly elected leadership team for its National Board of Directors and welcomed five new Board members. The newly elected officers include: Paul T. Conway, as President; Richard Knight as the Vice President and Chair of Public Policy; nephrologist Dr. Richard Goldman as Treasurer and Kelly Kavanaugh as the AAKP Treasurer.
“Our national meeting was a powerful reminder that kidney patients are fully engaged and invested in their health outcomes and prepared to raise their voices on issues of importance. Our fellow patients realize that policy decisions made by their appointed and elected Congressional leaders in Washington, D.C. have profound implications on their future health and they expect full and ongoing access to a consistent level of high quality care. They also understand that decisions made at the Federal level invariably impact the medical professionals, researchers and companies that have invested decades of study, hard work, and investments in efforts to produce more life-saving treatments and medical inventions.”
The AAKP National Patient Meeting embodies both heart and action; the meeting is varied in scope but singular in benefit. It strives to bring an enhanced quality of life to all participants, and translate these advancements to the entire kidney community. Mr. Conway noted that several aspects of the program pointed to its strength and value, including:
- General session focusing on Innovations in Kidney Disease Therapy which including presentations by Dr. Victor Gura, inventor of the Wearable Artificial Kidney, Dr. Mahesh Krishnan, Vice President Clinical Innovations and Public Policy at DaVita HealthCare Partners, Dr. Robert Kossman, Chief Medical Officer at Fresenius Medical Care North America, and Daniel Call, Vice President of Product Development at NxStage Medical. The presentations presented information on what patients can expect to see in the future in terms of treatment.
- A plenary session focused on federal public policy issues, and the AAKP strategy and tactics aimed at enlisting more allies in efforts to make certain Federal appointed and elected Congressional leaders are fully aware of kidney patient concerns. AAKP is expanding its social media and communications efforts nationally and locally in order to recruit more patients, patient advocates and medical professionals within their national advocacy strategy.
- Discussions on key issues impacting the kidney community including policies that enable kidney patients to keep working as long as possible; the newly proposed Centers for
Medicare & Medicaid Services 5 star rating system for dialysis centers; immunosuppressive drug coverage for the life of a transplanted kidney; donor and patient costs related to organ donation, increased research funding for the National Institute of Health (NIH) and other Federal research centers; and fair reimbursement for the training of home hemodialysis patients.
- 15 breakout educational sessions that covered topics for all modalities including chronic kidney disease, dialysis and kidney transplantation. Topics included Preventing the Progression of Kidney Disease, Getting Back to Work, and Understanding the Living Kidney Donation process.
- 79 participants of the AAKP National Patient Meeting received a free flu shot as part of the AAKP and Fresenius Medical Care North America (FMCNA) partnership to “Slug the Bug.” FMCNA launched an awareness program to educate patients and its staff about how to avoid catching or spreading the flu virus.
- Celebrity chef and Food Network star Aaron McCargo, Jr. provided a live cooking demonstration of one of his favorite kidney friendly recipes at the AAKP Annual Award Dinner. Chef McCargo has been working with FMCNA for several years to create a variety of appetizing recipes that meet the unique dietary restrictions of patients receiving dialysis.
- Movie screening of the documentary film Perfect Strangers. Perfect Strangers raisesquestions about what motivates an individual towards an extreme act of compassion. The documentary tells the story of two engaging characters. One is Ellie, who embarks on a journey to give away one of her kidneys. The other, Kathy has hopes of receiving a transplant. Both women face unexpected challenges as their parallel stories unfold over the course of four years.
Prior to being elected AAKP President, Mr. Conway served as the Vice President and Chair of the Public Policy Committee for AAKP for the past several years. He serves on the Polycystic Kidney Disease Foundation (PKDF) national board and is a member of the Kidney Health Initiative (KHI). He is a kidney transplant recipient who has managed his kidney disease for 34 years. Mr. Conway has an expansive career in public service, including service under three governors and four U.S. presidents. He has served the Commonwealth of Virginia as the Deputy Secretary of Health and Human Resources and on the Board of Health Professions. His federal posts have included Chief of Staff of the U.S. Department of Labor and as an agency Chief of Staff at the U.S. Department of Homeland Security where he was awarded the Secretary’s Silver Medal for significant contributions to the strategic mission of DHS.
Prior to his election as Vice President, Mr. Knight served as the AAKP Treasurer and is a transplant recipient. Mr. Knight is a former Legislative Director on Capitol Hill, a small business owner and a faculty member at Bowie State College, a Historically Black College and University (HBCU) located in Maryland. Mr. Knight also serves on the board of the Mid-Atlantic Renal Coalition (ESRD Network 5).
Richard Goldman, MD is a nephrologist from Albuquerque, NM. He is now the new Secretary for AAKP. Dr. Goldman serves on the End-Stage Renal Disease Network 15 Board of Directors and is the President of the Forum of ESRD Networks.
Kelly Kavanaugh was elected Treasurer of AAKP. She is the wife of a kidney transplant recipient and serves as Chief Financial Officer with the Tampa Bay Partnership. In this role, she directs the financial affairs of the organization including financial plans, accounting policies, and financial reporting. Additionally, Ms. Kavanaugh is responsible for oversight of investor development, human resource functions as well as the organization’s office and technology systems. Ms. Kavanaugh is a Certified Public Accountant with over 25 years’ experience in finance and administration across a variety of industries including economic development, healthcare and law.
The new AAKP Board Members include: Brian Hess, a nationally known patient advocate and home hemodialysis patient from Edmond, Oklahoma; Tanya Langford a lawyer and professor at the University of Tampa in Florida; Jenny Kitsen, former executive director of the ESRD Network of New England from Chester, CT; Gigi Politoski, former Vice President of Programs at the National Kidney Foundation from Manhasett, NY; and Suzanne Ruff of Charlotte, NC, living kidney donor, author of The Reluctant Donor and a freelance writer for The Charlotte Observer.
AAKP was founded in 1969 by a group of six kidney patients. Celebrating its 45thAnniversary, AAKP has evolved to be the primary source of advocacy, education, and interaction for chronic kidney disease patients, ESRD patients and kidney transplant recipients, as well as the families and professionals who support them in improving their health and their lives.
For more information on the AAKP National Patient Meeting, visit www.aakp.org or call 1-800-749-2257.
AAKP is a voluntary non-profit organization founded by kidney patients, which for 45 years, has been dedicated to improving the quality of life of kidney patients through education, advocacy and the fostering of patient communities. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances, and assume more normal, productive lives in their communities.