In Part I of this two-part State of the States series on the status of state kidney programs, we provided NN&I readers with information on the history of their development. In 1990, a survey of 22 state kidney programs was conducted on their financial status and services they provide. We recently sent the same survey, with several additional questions, to the 15 state kidney programs that exist today to obtain updates. Our goal was to compare the answers from the programs today with the information from the 1990 survey and to identify areas of strengths and current and future challenges.
We had a response rate of 60% to the survey (9/15). What follows is a comparison of data from the 1990 survey with the results of the current one.
Program funding. In 1980, the average annual program budget was $2,237.76 with a range of $120,000 to $10,758,000. In 1990, the average had decreased to $2,165,835 with a range of $100,000 to $11,340,300. In 2014, the average funding was just under $2.5 million annually with a range of $478,560 to $6,779,000 (one program did not provide funding information). Seventy-five percent of the current state kidney programs responding to the survey indicated they had no decreased funding within the past five years.
Number of people served annually. In 1980, the average number of people served by a state kidney program was 877. In 1990, it was 2,820. There is a wide range of people served in state kidney programs today. One program reports serving 138 people annually, and the highest number from the respondents was 19,900, largely dependent on state population. The estimated total served by state kidney programs during the past year is 37,571 by the nine programs that responded. One program reports serving people with hemophilia and adult cystic fibrosis in addition to those with kidney failure.
Eligibility criteria. State kidney programs today report similar eligibility criteria from the 1990 survey, including medical diagnoses of end stage-renal disease, financial criteria, and residency/citizenship status. State kidney programs continue to see themselves as a payer of last resort, and all but one of the programs completing our survey require an annual recertification of need to continue receiving program benefits.
Program benefits and payments. Program benefits remain similar to the 1990 survey including assistance with dialysis and transplant costs, medication co-pays, transportation, insurance premiums, and nutritional supplements. Only three of the programs responding today indicated they have an annual program benefit maximum per person. Educational or preventive services have been reduced or eliminated over time. Only three programs indicated they continue to provide these type of services.
Payments are made to people with ESRD, dialysis providers, and other entities as listed in the chart below, Responses to the “other” category included doctor offices, hospitals, and transportation vendors.
State kidney programs today are implementing a number of strategies to continue adequate funding for the services they wish to provide. Actions include grant-writing, fundraising, seeking additional funding sources, and advocacy such as legislative visits and advocacy days at state Capitols (see chart below).
For those state programs that have survived, remarkably they appear to be holding their funding. Their focus continues to be on the concrete medical needs not covered by other resources, Only three programs offered educational information, Time will tell whether state kidney programs continue to decrease and funding and/or services shrink or grow with a better economy. For now, those that continue strive to offer services that fill the gaps that government or private funding does not provide.
2014 state kidney programs
1. Alabama Kidney Foundation
2. Arkansas Kidney Disease Commission
3. Delaware Chronic Renal Disease Commission
4. The Illinois State Chronic Renal Disease Program
5. Maryland Kidney Disease Program
6. Missouri Kidney Program
7. Nebraska Chronic Renal Disease Program
8. New Jersey Trans-Atlantic Renal Council, Inc.
9. Pennsylvania Chronic Renal Disease Program
10. South Dakota Chronic Renal Disease Program
11. Tennessee Renal Disease Program
12. Texas Kidney Health Care
13. Washington State Kidney Disease Program
14. Wisconsin Chronic Disease Program
15. Wyoming End Stage Renal Disease Program