AKF organizes letter on the need to improve public health data systems

AKF wrote and sent a letter, signed by 18 patient and disease organizations, to Senate and House leadership urging Congress to dedicate additional resources to modernize public health data systems. Doing so will help address the gaps in data we have seen during the COVID-19 pandemic, particularly with respect to race and ethnicity information and other patient characteristics. The data is not reported in a timely manner, and race/ethnicity information is unavailable for more than half of the reported cases. Having accurate and comprehensive data about the impact of COVID-19 on minorities is an essential component to developing policy solutions to tackle racial and ethnic health disparities.

The inconsistency in the collecting and reporting of demographic data is due in large part to antiquated public health data systems at local, state, tribal and territorial public health departments. Years of underfunding for these systems and in public health in general, has led to a fragmented infrastructure in which not all the critical information is able to flow seamlessly and efficiently from providers and labs to public health departments and the Centers for Disease Control and Prevention (CDC). This leads to missing or incomplete data that is essential in responding to a public health emergency.

Specifically, we asked Congress to include the Saving Lives Through Better Data Act (S. 1793) in the next COVID-19 legislative package. The bill would establish a grant program for public health data system modernization and authorize $100 million each for fiscal years 2020 through 2024.

Social determinants of health legislation introduced in Senate

In our previous newsletters, we informed you of a bill introduced in the House of Representatives by Rep. Nanette Barragan (D-CA), H.R. 6561, the Improving Social Determinants of Health Act of 2020. The legislation would create a social determinants of health (SDOH) program at the CDC to focus on the social, economic and environmental conditions that affect health and wellbeing and are significant contributors to health disparities. On August 5th a companion bill, S. 4440, was introduced in the Senate by Senators Tina Smith (D-MN) and Chris Murphy (D-CT).

The legislation would create a pathway for improvements in communities that currently have higher rates of chronic illness by funding public health departments to work with other social services departments to ensure individuals have access to safe housing, education, job training and nutrition programs. Together, all these aspects of life can be improved and help slow the progression of kidney disease in minority communities, including reducing the number of people who must go on dialysis.

We encourage AKF Ambassadors to take just two minutes to contact their representative and senators through our website and ask them to cosponsor this important piece of legislation.

AKF to host upcoming virtual congressional briefing

AKF will be hosting a virtual congressional briefing titled, “COVID-19, Health Disparities and the Social Determinants of Health” on Wednesday, September 16th, from 1–2 p.m. ET.

A panel of health experts and AKF Ambassadors will educate congressional staff and other policymakers about SDOH, explain the impact they have on kidney disease and on communities of color, and describe the steps we can take to address these very complex issues. Rep. Barragan, the lead sponsor of the SDOH legislation (H.R. 6561), will also provide remarks during the briefing.

We will update the AKF Ambassadors Facebook Group with participation information closer to the date of the briefing.