By MARY LOU MANNING
Kidney treatment program threatened by federal area guidelines
CLEANSING THE BLOOD of patients with kidney disease by renal dialysis is involved and costly—very. State and federal agencies now bear the brunt of the cost for this vital treatment, but recently a clash over the regional boundaries of treatment areas has threatened to disrupt the program in Illinois. The argument centers on whether the state should be considered one area for the purposes of the program or be divided into three areas according to federal guidelines.
Consider: You are a victim of kidney disease. Your doctor has informed you that you must receive dialysis treatments three times a week or you will die. Each treatment costs from $150 to $180, bringing a week's cost for dialysis to about $500. The treatments must continue unless a transplant is performed sometime in the future. Transplants cost upwards of $20,000.
You make about $250 a week. What can you do?
If you're an Illinois resident, you are in luck. Since 1967, the Illinois Department of Public Health has administered a sophisticated renal program to aid those persons with end-stage kidney disease who meet both medical and financial criteria. The Illinois program has been heralded since its start as a model for other states. "Illinois was the first state to provide direct care for patients," explained Ruth Shriner, coordinator of the Illinois renal program. "At least 30 other states have patterned their programs after ours."
But state public health officials now fear for the future of the program. Because federal officials are attempting to "carve up" the state into regional treatment areas, state officials believe treatment schedules and arrangements could become unnecessarily confused. At present, the renal program is a cooperative venture with the Illinois Department of Public Aid assuming responsibility for those patients eligible for public assistance. If a patient is not in that category, he becomes the responsibility of the Illinois Department of Public Health (IDPH), providing other criteria are met.
It is an expensive process. Renal dialysis involves the use of an artificial kidney machine for approximately four to six hours at least three times a week. During the treatment, the patient's blood is "washed" by a machine either in a hospital, a limited care facility or at home. The state program recognizes some 50 hospitals and limited care facilities in both Illinois and four adjacent states. These centers are inspected and approved by the IDPH. As of this writing, 1,100 patients are receiving financial assistance, either through public aid or a special appropriation to public health. The patient's share is determined by a schedule of financial requirements and varies from case to case.
"The state legislature appropriated $1.2 million to the renal program this fiscal year," said Mrs. Shriner, who has been with the program since its beginning. "This amount is supplementary to all other resources." Part of these "other resources" comes from the federal government. Since July 1973, Medicare has assisted in the cost of treatments and/or transplants for patients covered by social security. "The law places these patients under the Medicare program," explained Dr. Byron Francis, head of the IDPH's division of disease control. The renal program is one of eight administered by this division.
The U.S. Department of Health, Education and Welfare (HEW), which administers the new program, estimates that the annual cost of the assistance will progress from $240 million the first full year to about $ 1 billion at the end of 10 years. They believe the prevalence of kidney patients eligible for these benefits will increase from 13,000 to 60,000 over the same period. For those who qualify, this federal program amounts to 80 per cent of the cost of each treatment. The remaining 20 per cent is picked up by the patient or the state. However, Medicare coverage does not start until the beginning of the third month after the month in which the first treatment began. This leaves a period of from 61 to 90 days, or 25 to 39 treatments, for which the patient, his insurance company or one of the two state departments must pay.
This same Social Security Act carries with it an amendment calling for steps which many think will endanger the pioneer program. Under provisions of the Social Security Amendments of 1972, HEW has the authority to develop a nationwide system of renal networks from which to administer the federal assistance. Since the law was passed, the state has had to cope with interim regulations which took effect July 1974. "These regulations governed the type of administrative bodies a network must have, the type of facilities they must include, the population of a network, and the way in which a network will be set up," explained Dr.Francis. "What is being argued now are the final regulations which include the actual designation of network lines."
Dr. Francis joins other state officials in their concern over these regulations. HEW plans to carve Illinois up into three networks: the northwestern Illinois counties of Henry and Rock Island would become part of a region with Iowa and a portion of Nebraska;
66 counties south of Peoria would join268 / Illinois Issues / September 1975
Officials are concerned
about what the state
legislature will do when it
sees the state carved up into
regions overlapping other
states in a federal network
the treatment network of Kansas and
portions of Missouri; and the remaining 34 northern counties would stand as
a complete renal network. No other
state finds itself cut up in as many
different networks, and in some states
network boundaries conform to state
borders. In all, 29 networks covering
the entire country were proposed earlier
this year. In designating these proposed
networks, HEW's Bureau of Quality
Assurance has placed emphasis on population concentrations, using what are
called Standard Metropolitan
Statistical Areas (SMSA), which are
cities or a group of cities and the surrounding area considered as a unit by
the U.S. Census Bureau. "HEW will not allow network lines
to cross SMSA's," Mrs. Shriner said,
"and patients, except in unusual cases,
would not be able to cross network
lines." This would mean that a patient
in Macomb would not be able to receive
treatment at Galesburg, as often
happens, nor would a patient in
Lawrenceville be directed to Vincennes,
Indiana. A renal patient in western
Illinois would find himself in the same
network as someone in eastern Kansas,
some 600 miles away. There are other criteria, however, for
setting up network lines. According to
HEW final policies of April 1974, a
minimal utilization rate for renal services must also be considered along with
population. Also, a medical review
board must be established for "utilization review and quality assurance."
"Illinois already has a comparable
body," Dr. Francis stated. "What I
would like to see is a network set up in
terms of the federal requirements which
covers the entire state," he continued.
"It would be the practical thing in terms
of patient care, quality care and financial support of care." This idea has been echoed by other
state health officials, and in April they Region V recommendations of February 1975 conclude: "The Illinois
program has been in existence for eight
years and has provided quality care for
more than 1,000 patients. To split up
this program by network lines would: What does all this mean to Peoria
Pete or Pickneyville Pat, patients who
suffer from renal disease and are unable to pay $20,000 for a kidney
transplant or $23,000 annually for
dialysis? "We are concerned about what
the state legislature will do when it
sees the state carved up into three networks and placed with other states in a
renal region," offered Mrs. Shriner,
who also heads the state's hemophilia
program. There are fears that the General
Assembly will refuse to fund the state
program if reimbursement determinations are made by a panel of regional
administrators instead of state personnel. Reimbursements under the
Illinois program are already higher than
those in Missouri, meaning hospitals in
the southern Illinois-Missouri-Kansas Not allowing a patient to cross network lines is seen as an unnecessary
requirement by state officials. "For personal reasons, a kidney patient from
Dwight might wish to receive treatment
in Chicago," Mrs. Shriner said.
"Perhaps he has relatives there. However, under the proposed network
system he would have to seek treatment in the downstate network." HEW officials in Washington have
discounted these concerns as "fear of
losing control of the network." A
spokesman said earlier that despite the
network system, Illinois would be paying only for the treatment of Illinois
patients, and that reorganization is not
expected to inconvenience anyone from
obtaining treatment. But still another official admitted
that the state had little to gain should
this plan be adopted. "Illinois has one
of the better programs in the country
and is, in fact, a pioneer in the field,"
Demers admitted. "They probably have
little to gain over what they already
have. HEW is advocating individual
review of patients," he continued. "The
purpose of the network is two-fold: to
plan for appropriate facility development and to conduct a review of patient
care. To make sure the facilities have
up-to-date standards—this is what it's
all about. Illinois has been doing some
of this," Demers said. "HEW will only
strengthen it." The network designations dividing
Illinois into three renal regions were entered into the Federal Register in July.
After a 60-day period for receiving
comments, the final designations will be
made.
September 1975 / Illinois Issues / 269