Innovation and Engagement Transform Infection
Prevention and Disaster Readiness
Government Leaders and Care Providers Must
Involve Patients in Continuity Plans
WASHINGTON, July 1, 2024 /PRNewswire/ -- During June,
National Safety Month, the American Association of Kidney Patients
(AAKP), the largest independent kidney patient organization in the
U.S., rolled out a new, year-long safety awareness and public
education campaign titled "Every Patient Safe." The
multi-faceted campaign focuses on the unique risks and unmet safety
needs of America's highly vulnerable kidney patients and kidney
transplant recipients. Those risks include ongoing susceptibility
to serious COVID infection and premature death, increased
vulnerability to healthcare-acquired infections (HAIs) and
catheter-related bloodstream infections (CRBSIs) among hemodialysis
patients, future pandemics, and disruptions caused by sudden
natural and unnatural disasters.
AAKP President Edward Hickey,
III, a kidney patient, stated, "Our Every Patient
Safe campaign will engage patients, medical professionals,
industry, and policymakers to raise awareness of kidney patients'
ongoing unmet safety needs across multiple care settings and under
very dynamic scenarios. We applaud the ongoing efforts of medical
professionals to provide safe and timely care to their kidney
patients. Yet, we share a common concern that the lessons learned
during COVID and recent disasters regarding kidney patient
vulnerabilities will be forgotten, and serious mistakes will be
repeated. Every level of government and every sector of the health
and pharmaceutical delivery system must understand the unique risks
involved with kidney care, and they must engage both patients and
professionals in planning for ongoing and future threats." Hickey
is a U.S. Marine Corps Veteran and has served as a senior appointee
in multiple presidential administrations, including as Senior
Advisor for Homeland Security to the Director of the U.S. Civil
Service and a senior staff professional in the U.S. House of
Representatives.
On May 10, 2023, as White House
and U.S. Department of Health and Human Services (HHS) senior
appointed officials announced the end of the COVID-19 Public Health
Emergency, AAKP issued a statement entitled "Don't Forget
Kidney Patients – Their Vulnerabilities Remain." Over 37 million
people are impacted by kidney disease in the United States, nearly 1 in 7 adults, and
almost 600,000 people receive life-saving kidney dialysis. Over
250,000 people are living with a kidney transplant, and over 90,000
people with kidney failure are on the waitlist for a kidney
transplant. The COVID-19 pandemic has been and continues to be
devastating to the kidney patient community, with unprecedented
numbers of hospitalizations for severe illness and premature deaths
among both immunocompromised dialysis patients and immunosuppressed
kidney transplant recipients (see American Journal of Kidney
Disease (AJKD), Executive Summary, U.S. Renal Data System 2023
Annual Data Report: Epidemiology of Kidney Disease in the United States
https://www.ajkd.org/article/S0272-6386(24)00048-9/pdf).
The "Every Patient Safe" campaign will feature a series
of risk awareness and infection prevention resources, patient
tools, OnDemand educational programming, and engaging social media
content. AAKP has tested several new platforms that will allow
kidney patients to better use their own social media networks to
share information with fellow patients and medical professionals.
AAKP will also leverage the campaign to escalate demand for greater
patient care choice and access to new, safe FDA-approved products
that mitigate patient risks from life-threatening HAIs and CRBSI
infections. The campaign will also highlight key lessons learned
from the COVID pandemic and how rapid adoption of technology,
including telemedicine and suites of remote medical monitoring
tools and devices, can create a more nimble and resilient health
delivery system for high-risk kidney patients under any disaster
scenario.
As part of the campaign launch, AAKP expanded its emergency
preparedness resources to support kidney patients, care partners,
and families in planning for natural and unnatural disasters
through the stand up of a comprehensive emergency preparedness web
page, accessible through AAKP's national website at
https://bit.ly/AAKPEmergencyPreparedness, which includes top
tips for readiness, various checklists, and necessary items kidney
patients must have in personal emergency kits. Also available are
links to resources with our federal and non-government partners,
including Healthcare Ready and Kidney Community Emergency
Response.
AAKP has a very long history of collaboration with the American
Society of Nephrology (ASN), the Renal Physicians Association
(RPA), the American Society of Transplant Surgeons (ASTS), the
American Society of Transplantation (AST), and multiple other
kidney stakeholders to raise awareness of a wide range of safety
issues for kidney patients and the need to build resiliency into
the health system for kidney care and future threats. In
collaboration with ASN, AAKP has participated in ASN's COVID-19 and
Other Emerging Threats initiative alongside members of ASN's
Excellence in Patient Care team. AAKP also works closely with the
Centers for Disease Control and Prevention (CDC) and, in 2016, was
a founding member of the CDC's Making Dialysis Safer
Coalition. AAKP partners with the CDC to help prevent HAIs and
CRBSIs among kidney patients and also raises awareness of the
CDC's Chronic Kidney Disease Surveillance initiative.
AAKP is a formal liaison organization to the CDC's Health
Infections Practices Advisory Committee (HICPAC) and is represented
by AAKP's Chair of Policy and Global Affairs, Paul T. Conway, a former agency chief of staff
for the U.S. Department of Homeland Security (DHS).
Additional campaign topics featured throughout the year include
aging and kidney disease, the risk of slips/falls, and what kidney
patients need to know when going into the hospital. During the
campaign in July 2024, AAKP will also
announce a call for applications for its annual AAKP Patient Safety
Award, which recognizes specific and impactful leadership and
activities that exemplify the Association's strategic goal of
advancing patient safety through innovations and specific measures
within health systems, both nationally and globally, that inspire
actions to improve overall patient safety. Each year, the AAKP
provides the kidney patient community with invaluable resources
they can use to prepare for both natural and unnatural emergencies
and was recognized in 2021 by the former Governor of the
State of Arizona, Douglas A. Ducey, for AAKP's partnership with
the Arizona Department of Health ADVICE Collaborative.
According to the 2023 Annual Report of the United States Renal
Data System (see summary and tables
- https://usrds-adr.niddk.nih.gov/2023/end-stage-renal-disease/4-vascular-access),
the "landscape of vascular access in the U.S. is not encouraging"
and "the percentage of individuals who die within 18 months of
starting HD is nearly twice as high among patients initiating with
a catheter than among those initiating with a fistula." The
COVID-19 pandemic exacerbated, but was not the sole cause, of the
increased utilization of catheters among dialysis patients due to
limited access to hospital operating rooms for permanent access
placement. Over the past decade, AAKP has advocated for improved
patient access to fistulas, which often require full access to
outpatient surgical facilities, and has championed greater patient
access to a series of new innovations that improve safety and
reduce infection risks among patients who depend upon both fistulas
and catheters for their life-saving dialysis care. In multiple
instances, the Centers for Medicare and Medicaid Services (CMS) has
stymied innovation and patient access to new devices and drugs
approved by the U.S. Food and Drug Administration (FDA) that could
improve patient safety and care outcomes. In these instances, CMS
has interpreted payment and reimbursement guidelines to limit the
wider use of innovations among dialysis patients and dialysis
providers, despite federal data collected by HHS documenting unmet
patient safety needs and improved dialysis access.
About the American Association of Kidney Patients (AAKP):
Since 1969, AAKP has been a patient-led organization driving policy
discussions on kidney patient care choice and medical innovation.
In 2018, AAKP established the first and largest U.S. kidney voter
registration program, KidneyVoters™. Over the past
decade, AAKP patient advocates have helped advance lifetime
transplant drug coverage for kidney transplant recipients (2020);
the presidential Executive Order on Advancing American Kidney
Health (2019) new job protections for living organ donors under the
Family Medical Leave Act (FMLA) via the U.S. Department of Labor
(2018); and Congressional legislation allowing HIV-positive organ
transplants for HIV-positive patients (2013). Follow AAKP on social
media at @kidneypatient on
Facebook, @kidneypatients on Twitter,
and @kidneypatients on Instagram, and
visit www.aakp.org for more information.
MEDIA CONTACT:
Jennifer
Rate
Director, Communications and Digital Operations
jrate@aakp.org (813) 400-2394
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SOURCE American Association of Kidney Patients