Can you remember back to 1992? That was the year that Bill Clinton became president of the United States, the movie Basic Instinct was released, the Mall of America in Minnesota was built, and the cost of a gallon of gasoline was $1.05.  In the medical field, DNA fingerprinting was invented, and in the end-stage renal disease community, there were 220,000 patients, with 22,000 waiting for a kidney transplant. The average public and private insurance annual expense per dialysis patient was $47,000. Epogen, which was approved by the U.S. Food and Drug Administration in 1989, was being used by 82% of all hemodialysis patients, and the average hematocrit was 29.6 % (USRDS, 1993).

In 1992, many states also had kidney programs that assisted ESRD consumers with expenses related to their treatment. Some also provided patients with resources related to education, prevention, and funded or conducted research related to kidney disease.

In March of that year, this journal published an article entitled, “State kidney programs: Will they survive?” 1 The authors, from the National Organization for State Kidney Programs, compared funding levels with caseloads of state programs between 1980 and 1990 and found that while funding levels had stayed flat, caseloads had increased significantly. Of the 22 state kidney programs who responded to their 1991 survey, most programs indicated they had to take assertive steps to tighten their eligibility requirements and reduce or eliminate some services. In fact, the authors’ prediction in the NN&I article was spot on: “…State kidney programs will be challenged throughout the remainder of the decade and beyond. Without aggressive and innovative cost-containment efforts, state kidney programs are likely to face even more difficult times ahead.”

Today, the overall number of state kidney programs is decreasing, and the services offered have been drastically reduced. During the past 5-7 years, many states have cut back on funding vital services for health and education programs. Consequently state kidney programs have been affected. In addition, ESRD no longer holds the public interest or creates the outcry of needs. Other medical issues seem to have a higher priority (in Missouri, the only state health initiative to gain funding recently was autism).

figure-1

Many kidney programs are still seeing a demand for their services. Although the Missouri Kidney Program (MoKP) has survived, funding has been at the program’s 1980 level for the last five years. Missouri’s funding has dropped three of the past five years, with an overall 50% reduction. Consequently, MoKP’s patient services have been cut in half, along with staffing. MoKP has maintained basic services such as medication assistance, transportation, and some Medicaid Spend Down insurance coverage. However, the program had to reduce income and asset eligibility guidelines and discontinued assisting with Medicare premiums, nutritional supplements, and private insurance premiums. Years before that, MoKP ended their cost-containment research funding and direct payments for dialysis treatments. The program continues their historically strong Chronic Kidney Disease patient education classes, but with no dedicated full time employee or office.

Political Pressure

In MoKP’s frequent legislative advocacy efforts, advocates strive to show cost effectiveness with preventive CKD education and encouraging self care, plus maintaining medical stability and continuity of care for chronically ill patients with such expensive treatments. This has generated interest from legislators but not necessarily additional funding.

NOSKP, established in 1980 to facilitate collaboration between state kidney programs, is no longer active, and hasn’t been for several years. The organization encouraged the development of state kidney programs as Medicaid, Medicare, and other third-party payers failed to cover all expenses related to ESRD treatment. It was successful in bringing kidney programs together to help advocate for patients on both the state and national level. Each program offered different services and guidelines for assistance, but the common mission was to reduce the financial, medical, and psychosocial burden of kidney disease. That type of collaboration – advocating for patients in need – is sorely missed.

What is the current status of state kidney programs? And how will new health insurance options, such as the Affordable Care Act Health Insurance Marketplaces and Medicaid expansion impact the kidney community and state kidney programs?  Stay tuned for Part 2 of this series.

Does your state have a kidney program?

In 2012, an informal poll was conducted, and 17 active state kidney programs were identified. Funding amounts were not obtained. That list can be found at:  http://som.missouri.edu/mokp/StateKidneyPrograms.htm