‘COVID-19 survivors are coming out as kidney patients’
The pandemic prompted the National Kidney Foundation to radically change how it works, compromising fundraising drives – just as demand for its services increased
Like all patient organizations, the NKF was hit with major disruptions in 2020. Now, it faces increased demand for support as people with no history of renal problems are emerging from COVID-19 with kidney disease. We asked Kelli Collins, Director, Patient Engagement at the National Kidney Foundation to reflect on the impact of the pandemic and her take on the future.
How has the COVID-19 pandemic affected your work at NKF?
As with many organizations, our workforce has become fully remote. In addition, we have had to pivot our programing and local events to digital formats.
As a national organization, NKF already offered digital programs prior to COVID, which were a great resource to have immediately available when the pandemic struck and as the wave continues throughout the country.
Our NKF Peers Mentoring Program that we started in 2011 connects people with kidney disease, as well as living donors, to a trained mentor one-on-one over the phone through a toll-free, confidential system. This program is overseen by MSWs [Masters of Social Work] who provide additional education and support to participants throughout their involvement with the program.
Has demand for information and services risen due to the pandemic?
NKF has a long history of being a reputable, trusted source of education, resources and information. It was no surprise that people turned to us during the pandemic. We worked tirelessly to create and update information and education in real-time as new research and information became available about COVID and its effect on kidney patients and the kidneys. Our website is a one-stop-shop for all things related to kidneys and COVID-19.
Unfortunately, our mission grew with COVID as well, as we are seeing that people hospitalized with COVID-19 who had no previous history of kidney disease are coming out as kidney patients. We are actively following these developments and research and will continue to support people facing kidney problems post-COVID.
Has it impacted fundraising, education and awareness campaigns?
Yes, we launched a national awareness campaign in March that ultimately paused as the pandemic intensified throughout March. The campaign successfully relaunched in September.
Like many non-profit organizations, our local walks and other live fundraising events were postponed for the safety of our community. However, we have successfully pivoted to virtual walks, live-virtual conferences and other events allowing people to participate safely while still raising money for a great cause.
Additionally, we’ve increased the number of online educational events via webinar and Facebook Live. Luckily, these formats were not new for NKF so we were able to quickly make this change and ramp up efforts to produce more. We are grateful for our vast network of kidney patients and health care professionals who stepped up to participate as speakers in these online events. You can find our library of these videos on NKF’s YouTube page.
Have you seen an impact on clinical trials e.g. studies being paused?
We have heard from pharmaceutical partners, professionals and patients that some clinical trials were delayed or paused due to COVID-19. While we don’t know all of the adaptations or changes that were made, we do know that many trials moved to “remote” lab tests and monitoring that could be done at home versus having to come into a study center.
Additionally, NKF is involved with a number of PCORI projects, unfortunately, a few had to be cut short or postponed in light of COVID-19. In-person interventions were not advisable during this uncertain time.
Has the pandemic changed the delivery of patient care?
The pandemic has led to some changes in the delivery of health care including increased use of telehealth visits. Many patients have adapted well to telehealth and look forward to having this continued option; however, time will tell whether patients will be as accepting in the long-term.
Have patient engagement activities been disrupted this year?
Again, all in-person events or activities are simply not possible, so we’ve had to shift to virtual. Each year, NKF hosts the Kidney Patient Summit where we bring over 100 kidney patients, family members, and living donors to Capitol Hill to raise awareness of kidney disease and fight for policy and legislation affecting kidney patients and living donors. We successfully transitioned this event to a virtual format and had more participants than ever before!
What are your hopes and expectations for 2021?
I think we are all hoping to return to a bit of normalcy! For us as NKF, our mission has never been more vital. We’ll continue to be a beacon of hope and support for all affected by kidney disease and strive to raise awareness for those at risk. NKF recently called on the Biden-Harris Administration to make kidney disease a top priority during their first 100 days in office.
Affecting 37 million adults in the U.S., kidney disease sits at the intersection of three forces that will shape health care during the new Administration: it is one of the premier examples of low-quality care causing preventable human suffering and enormous spending, it exemplifies the long shadow of racism on public health, and kidney disease patients, especially kidney disease patients of color, continue to bear the brunt of the COVID-19 pandemic.