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Kidney Failure and the Federal Government (1991)

Chapter: Part III: Access, Access Problems of ESRD Patients

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Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

PART III
Access

Access to health care arises as a policy question because some individuals lack appropriate health care services. Access deals with limits to care, primarily financial barriers to care, especially the resources that enable individuals to purchase care. Medicare and Medicaid were enacted in 1965 to remove financial barriers to health care for the elderly and the poor. In 1972, Medicare was expanded to include those disabled, eligible for cash Social Security benefits, after a two-year period.

The Social Security Amendments of 1972 also established an entitlement to Medicare for most Americans individuals with permanent kidney failure. Medicare coverage meant that dialysis and kidney transplantation services would be covered as well as other medical services covered under the Medicare program. Despite this virtually universal coverage, a variety of access issues have arisen over the history of the program.

Congress, in the Omnibus Budget Reconciliation Act of 1987, asked the IOM to examine access for two groups of individuals with kidney failure—those eligible for Medicare benefits and those not eligible for such benefits. Chapter 7 addresses the problems of both groups. Chapter 8 deals with limits of access to kidney transplantation that may stem from the limited period of Medicare eligibility after transplantation and from restrictions on payment for immunosuppressive drugs. This chapter also considers the issue of equitable allocation of donated organs but places greatest emphasis on the problems created by the shortage of kidneys suitable for transplantation.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×
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Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

7
Access Problems of ESRD Patients

The high costs of dialysis and transplantation severely limited the access of most Americans to care for ESRD before 1973. Section 2991 of the Social Security Amendments of 1972 effectively resolved access problems stemming from financial considerations. That statute defined eligibility for ESRD beneficiaries in the following language:

(e) Notwithstanding the foregoing provisions of this section, every individual who—

  1. has not attained the age of 65;

  2. (A) is fully or currently insured (as terms are defined in section 214 of this Act), or (B) is entitled to monthly insurance benefits under title II of this Act, or (C) is the spouse or dependent child (as defined in regulations) of an individual who is fully or currently insured, or (D) is the spouse or dependent child (as defined in regulations) of an individual entitled to monthly insurance benefits under title II of this Act; and

  3. is medically determined to have chronic renal disease and who requires hemodialysis or renal transplantation for such disease; shall be deemed to be disabled for purposes of coverage under parts A and B of Medicare subject to the deductible, premium, and co-payment provisions of title XVIII.1

The 1972 amendment created a ''near-universal'' entitlement to Medicare coverage of ESRD treatment for most Americans. It did not, however, create an entitlement for all.2 Consequently, one question that Congress asked in its OBRA 1987 charge dealt with access problems of ESRD patients who are not eligible for Medicare coverage. The congressional charge also asked that the study consider access problems of Medicare-covered ESRD beneficiaries. Both are considered below, with a focus on dialysis patients. (Chapter 8 deals with access problems of kidney transplant pa-

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

tients.) This chapter also deals with access limitations that flow from state laws and regulations, especially certificate-of-need (CON).

ESRD PATIENTS NOT ELIGIBLE FOR MEDICARE

Congress, in 1978, directed the Secretary of Health, Education, and Welfare

to conduct a study of the number of patients with ESRD who are not eligible for benefits with respect to such disease under this title, and of the economic impact of such non-eligibility of such individuals. Such study shall include consideration of mechanisms whereby governmental and other health plans might be instituted or modified to permit the purchase of actuarially sound coverage for the costs of ESRD. [Public Law No. 95-292, § 181(f)(6).]

HCFA responded belatedly in 1984 (HCFA, 1984). The report, using 1981 data, estimated that of the 55,000 ESRD patients in the United States who received dialysis treatments from Medicare-certified dialysis facilities, about 8,500 were not then entitled to Medicare benefits. Half of these unentitled patients were awaiting entitlement to the Medicare program and approval was expected: For these individuals, Blue Cross and other private insurers were the major sources of support for 50 percent, whereas Medicaid was the primary payment source for another 27 percent.

However, more than 4,000 of the 8,500 patients were reported as not eligible for Medicare benefits. The reasons are not entirely clear. Either they had not established fully or currently insured status under Social Security, or they had not filed an application for benefits. For 70 percent of these ESRD patients, public programs—the Veterans Administration, state Medicaid, and state kidney programs—constituted the major sources of support. The ESRD facilities surveyed for this study identified bad debts and delays in payment from non-Medicare sources as the two financial problems associated with unentitled patients. This was particularly true among self-pay patients—citizens as well as noncitizens—who lacked any public or private health insurance.

HCFA estimated that the cost of covering these unentitled ESRD patients who were not eligible for Medicare benefits would be $170 million for FY 1984 and $290 million for FY 1988. Since many unentitled ESRD patients were being supported wholly or partly by other federal programs, HCFA concluded that extending Medicare coverage to them would simply transfer responsibility from one federal source to another and recommended against legislation to do so.

The prevailing view, expressed by HCFA's 1984 report and accepted by many others, is that access limitations to ESRD treatment have been relatively minor. In addition to stability in the percentage of reported noneligibles

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

and the existence of other government programs to finance ESRD treatment, other factors supporting this view include the continuing growth of the patient population and the existence of an aggressive medical specialty that is dedicated to treating patients.

Who Are the Reported Noneligibles?

Although aliens not legally residing in the United States may present themselves for treatment as ESRD patients, and may represent a significant proportion of the noneligibles, as a practical matter they are seldom eligible for either Medicare or state Medicaid coverage. Citizenship or resident alien status is effectively a requirement for Medicare and Medicaid eligibility for ESRD treatment.3

Eligibility for Medicare coverage for ESRD is a function of Social Security insured status, which results from active labor force participation. Workers are eligible for Social Security benefits if they have established fully or currently insured status, measured by quarters of coverage, and meet other criteria (age 62 for some, age 65 for others, disabled, blind) that entitle them to receive benefit payments. Workers are fully insured for themselves and their families if they have a minimum of 6 quarters of covered employment; after 40 quarters of coverage, a person is fully insured for life. They are currently insured if they have 6 quarters of covered employment in the past 3 years. In 1989, covered earnings of $470 were required to earn one quarter of coverage.

Since 1981, there have been two major expansions of Medicare coverage. The Tax Equity and Fiscal Responsibility Act of 1982 (Public Law 97-248) extended Medicare coverage to federal government employees. The Social Security Amendments of 1983 (Public Law 98-21) made coverage mandatory for all new state and local government employees; voluntary participation had been available to such individuals since 1950.

Individuals with a diagnosis of ESRD who are not eligible for Medicare ESRD coverage either do not qualify for fully or currently insured status under Social Security or have not filed an application for Social Security coverage. This includes those with no work experience, or employed in jobs not covered by Social Security, or employed in covered occupations but who have not applied, and who are neither the spouse nor dependent child of an eligible person.

What individuals or groups of individuals are at risk of lacking Medicare ESRD coverage because they are not covered under Social Security? Data to answer this question are not collected currently by HCFA. Practically speaking, the ineligibles include some federal, state, and local government employees; domestic, farm, and all other workers in covered occupations who have not applied for coverage; and those who have never worked, such as young, unmarried, nonworking mothers and their children. People in

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

most of these categories are disproportionately concentrated among the poor and minorities.

Magnitude of the Problem

The total number of dialysis patients increased from 52,364 in 1980 to 90,886 in 1986; during this time, the reported non-eligible patients accounted for 6 to 7 percent (Table 7-1). In the 3 years from 1987 to 1989, however, that percentage increased to 7.2, 7.3, and 7.5 percent. Although the percentages were stable until recently, the absolute numbers of noneligible ESRD patients more than doubled from 3,697 in 1980 to 8,722 in 1989. The implications of this growth are examined below.

Geographic Variations

Although the national percentage of reported noneligibles has been stable, HCFA ESRD data show marked variation by state. In Table 7-2, these data are summarized for selected states, and several different patterns emerge. In the first pattern, some states have been consistently high over time and more recently have abruptly dropped to a very low percentage of non-Medicare patients. In Arkansas, for example, the reported non-eligibles declined from 20.1 percent in 1980 to 12.5 percent in 1986 and then fell

TABLE 7-1 Medicare Eligibility Status of Dialysis Patients, 1980–89

 

 

Medicare-Eligible Patients

Non-Medicare Patients

Year

Total Dialysis Patientsa

Number of Enrollees

Applications Pending

Number

% of Total Patients

1980

52,364

44,827

3,840

3,697

7.1

1981

58,924

51,359

3,768

3,797

6.4

1982

65,765

57,784

3,998

3,983

6.1

1983

71,987

63,624

3,945

4,418

6.1

1984

78,483

69,258

4,227

4,998

6.4

1985

84,797

74,169

4,965

5,663

6.7

1986

90,886

79,739

5,076

6,071

6.7

1987

98,432

85,774

5,587

7,071

7.2

1988

105,958

91,820

6,371

7,767

7.3

1989

116,169

100,857

6,590

8,722

7.5

a As of December 31 of the calendar year.

SOURCE: HCFA, 1980–89.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

TABLE 7-2 Percentage of Non-Medicare Patients Among Total Dialysis Patients, by State and Year, 1980–89

State

1980

1981

1982

1983

1984

1985

1986

1987

1988

1989

Arizona

16.2

16.1

16.2

14.8

12.3

13.7

12.2

12.8

15.2

15.1

Arkansas

20.1

15.0

14.1

13.1

12.2

12.4

12.5

3.5

4.8

4.6

California

7.8

7.2

7.6

7.6

8.0

8.4

8.5

10.1

10.9

11.0

Illinois

5.5

5.6

5.5

5.3

6.3

8.0

9.2

7.0

8.5

9.7

Iowa

12.6

11.9

12.2

11.2

2.4

10.2

0.9

3.1

4.2

2.6

Maryland

6.0

6.1

7.4

7.3

9.2

6.5

6.7

11.3

9.3

8.7

New Mexico

24.9

21.7

17.9

13.9

12.2

12.0

10.1

8.9

14.6

12.3

New York

7.9

7.5

6.6

6.8

7.5

7.8

8.4

9.0

10.2

9.8

Puerto Rico

12.8

7.7

8.7

7.0

7.4

8.3

6.3

10.0

9.2

7.7

Virginia

11.8

9.8

8.2

7.9

7.4

8.0

9.0

7.8

8.3

8.0

Washington, D.C.

29.1

27.5

15.9

17.4

16.3

20.6

15.5

26.4

17.4

17.6

All states

7.1

6.4

6.1

6.1

6.4

6.7

6.7

7.2

7.3

7.5

NOTE: As of December 31 of the calendar year.

SOURCE: HCFA, 1980–89.

precipitously to 4.6 percent in 1989. The recent drop may be due to the fact that patients treated at the Little Rock Veterans Hospital were counted as Medicare-eligible after the hospital obtained Medicare certification in 1986-87, although this does not explain the entire historical pattern (C.W. Roach, ESRD Network 13, personal communication, December 13, 1989).

A second pattern involves a stable rate suddenly increasing. For example, from 1980 through 1984, Illinois hovered around 6 percent for reported noneligibles, but from 1985 onward, it fluctuated between 7 and 10 percent. The reported noneligibles for Maryland were stable in the 6 to 7 percent range until 1983, increased briefly to 9.2 percent in 1984, returned to the lower level, then increased again to 11.3 percent in 1987, and have remained above 8 percent since then.

A third pattern involves percentages consistently higher than the national level over time. This is dramatically shown in the cases of Arizona and New Mexico. In 1988, Arizona had 222 noneligible ESRD patients (15 percent). Of these, 42 percent were whites, 29 percent Native Americans, and 22 percent Hispanics; one-quarter were covered under the Department of Veterans Affairs (DVA); three-quarters had "other" coverage. In New Mexico, for the same year, 71 patients (13 percent) were reported not eligible. Of these, 43 percent were Native Americans, 32 percent Hispanics, and 20 percent whites; more than one-quarter had no insurance; two-thirds had "other" insurance (S.K. Stiles, Intermountain End-Stage Renal Disease Network, Inc., personal communication, December 21, 1989). Furthermore,

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

the data strongly suggest that the reported noneligibles are concentrated among ethnic minorities. What is not known is the adequacy of coverage from non-Medicare sources or the financial effects of ESRD on other insurers such as state Medicaid, the DVA, and the Indian Health Service (IHS).

An examination of the percentage of reported noneligibles in 20 major U.S. cities relative to their states' percentages showed that some, but not all, had markedly greater concentrations of reported noneligibles than did their home states (Table 7-3). This was true for Boston, Chicago, Detroit, Los Angeles, Miami, New York City, Newark, and Philadelphia. In addition, Washington, D.C., fluctuated between a high of 29.1 percent and a low of 15.5 percent of reported noneligibles, a significant proportion of whom had Medicaid coverage only. These data suggest that proportionately more noneligible patients are found among urban residents, as well as among ethnic minorities.

Existing data on reported noneligibles do not include the extent and adequacy of other sources of support. Thus, they do not permit direct examination of the effects of noneligible status on access to or denial of treatment, nor do they allow comparison of the Medicare benefit package to non-Medicare coverage. Most important, they do not permit examination of the effect of eligibility status on patient outcomes.

Payment Sources

Potential sources of financial support available to noneligible ESRD patients are personal resources, private health insurance, or public programs. Personal wealth and private insurance may cover a few, but public programs must provide the support for most patients. The latter include state Medicaid programs, state kidney disease programs, the IHS, and the DVA.

State Medicaid Programs

A survey of ESRD-related expenditures by state Medicaid programs, state general assistance (welfare-medical) programs, and state kidney programs performed by the Intergovernmental Health Policy Project generated responses from 47 states and the District of Columbia (IHPP, 1989a).4 It showed that state Medicaid programs have very inadequate data on ESRD patients and expenditures. Only 23 states could provide Medicaid expenditure data for FY 1988, the most recent fiscal year; for fiscal years 1983 through 1987, the numbers reporting such data were 6, 8, 9, 14, and 18, respectively. Those 23 states reported $68 million in expenditures in 1988 but indicated that this underestimated true expenditures.5

State Medicaid programs serve two ESRD patient groups. Copayments are made for those Medicare-entitled patients who are also eligible for Medicaid (dual eligibles). In addition, treatment for individuals who lack any

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

TABLE 7-3 Percentage of Non-Medicare Patients Among Total Dialysis Patients, by City Versus State, and Year, 1980–87

City and State

1980

1981

1982

1983

1984

1985

1986

1987

Boston

Massachusetts

8.7

5.7

8.2

5.8

8.2

5.8

7.6

6.3

7.3

6.7

7.3

5.7

12.9

8.7

10.1

8.0

Chicago

Illinois

10.6

6.5

9.8

5.6

8.9

5.5

8.4

5.3

9.4

6.3

11.8

8.0

15.8

9.2

10.6

7.0

Cleveland

Ohio

5.7

4.8

4.6

5.1

3.8

5.1

4.1

5.2

3.0

5.4

9.5

7.1

9.5

5.6

8.6

5.6

Dallas

Texas

7.5

7.0

5.0

6.0

5.4

5.2

7.2

5.8

8.0

5.6

9.6

6.4

10.0

5.9

9.0

5.9

Detroit

Michigan

8.5

6.2

8.2

6.4

11.2

6.5

8.3

7.0

11.2

8.2

8.2

7.5

8.0

7.7

7.9

6.7

Indianapolis

Indiana

13.2

7.1

12.6

6.2

10.8

5.7

3.1

1.9

4.7

2.7

0.8

1.1

4.1

2.4

2.4

3.1

Los Angeles

California

11.8

7.8

11.9

7.2

10.5

7.6

9.5

7.6

13.6

8.0

13.5

8.4

15.9

8.5

14.3

10.1

Miami

Florida

9.0

4.5

12.0

4.8

12.6

5.2

12.1

5.4

11.8

5.4

9.8

5.3

9.9

5.9

10.0

4.9

New York City

New York

11.5

7.9

10.9

7.5

8.2

6.6

9.2

6.8

10.8

7.5

12.5

7.8

11.5

8.4

11.8

9.0

Newark

New Jersey

6.1

4.8

5.7

3.9

7.0

4.0

10.5

4.8

7.8

5.6

8.4

5.2

17.4

6.0

7.1

8.5

Philadelphia

Pennsylvania

8.2

6.6

6.5

5.1

6.6

5.4

7.1

5.4

7.8

5.7

8.2

6.2

8.1

4.8

9.1

5.8

Phoenix

Arizona

13.8

16.2

8.6

16.1

12.9

16.2

8.9

14.8

7.9

12.3

10.2

13.7

10.1

12.2

10.6

12.8

Washington, D.C.

29.1

27.5

15.9

17.4

16.3

20.6

15.5

26.4

NOTE: As of December 31 of the calendar year.

SOURCE: HCFA, 1980–87.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

Medicare coverage is paid for. Although state Medicaid ESRD expenditures for dual eligibles and reported noneligibles are undoubtedly substantial, neither a direct count nor a good estimate exists.

A follow-up survey of 10 states—California, Florida, Illinois, Louisiana, Maryland, Massachusetts, Michigan, New York, Pennsylvania, and Texas—addressed the extent of Medicaid coverage of ESRD services and related medications for those with Medicaid coverage only (not eligible for Medicare) and for the dual eligibles (Laudicina, 1990). The services examined included outpatient hemodialysis; in-center peritoneal dialysis; inpatient hemodialysis; kidney transplant surgery; blood transfusions; transportation; home hemodialysis; intermittent peritoneal dialysis; continuous cycling peritoneal dialysis; continuous ambulatory peritoneal dialysis; dialysis equipment, supplies, and dialysis support services; self-dialysis training; and paid aides to assist at home. Seven of the 10 states examined provide Medicaid coverage for nearly all of the 15 benefits surveyed.

Eight of the 10 surveyed state Medicaid programs reimburse for outpatient dialysis treatment at payment levels ranging from $110 to $150 per session. Illinois, Maryland, and Massachusetts pay the equivalent of the Medicare composite rate under their Medicaid programs. In contrast, Florida pays only for dialysis in a hospital-based center and sets an annual payment cap of $1,000 per Medicaid ESRD patient! Louisiana reimburses hospital-based centers up to 72 percent of billed charges. Texas Medicaid does not pay for home and routine hemodialysis. State Medicaid agencies generally pay the same for center-based and home dialysis, except New York, which pays lower rates for home dialysis, and Pennsylvania, which sets a lower rate for home dialysis but makes an additional payment for dialysis equipment rental.

With regard to Medicaid reimbursement policy for dual eligibles (Medicare and Medicaid), six states pay providers for the Medicare Part B deductibles and 20 percent coinsurance. Four other state's—California, Michigan, New York, and Pennsylvania—reimburse Medicare Part B coinsurance and deductibles for dual eligibles for facility and home dialysis, not to exceed the Medicare-approved amount. Texas indicated that coverage of ESRD services constituted a financial burden, a result of the growth in recent years of the overall Medicaid case load and an assessment that all chronic care expenditures are expensive.

The survey also investigated reimbursement for medications in the following categories: antihypertensives, anemia treatment, calcium/phosphorus metabolism control, multivitamin compounds, and kidney transplant immunosuppressives. Although state Medicaid programs routinely reimburse the drug costs for Medicaid-eligible patients, various restrictions exist. Florida does not yet provide erythropoietin (EPO) for its Medicaid recipients; California will not honor more than three prescriptions for antihypertensive

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

drugs within a 75-day period. Maryland limits payment for EPO to no more than $400 per prescription and attempts to get Medicare to cover the cost of Imuran and cyclosporine for Medicaid recipients who have received transplants within the year; Texas limits coverage of EPO to no more than three injections per week and will not pay for more than three prescriptions per month for drugs intended for home use (e.g., antihypertensives, calcium/ phosphorus metabolism controllers, multivitamin compounds, and cyclosporine). Medicaid agencies in most states do not reimburse separately for all ESRD-related drugs, although some drugs are included in the dialysis facility's rate (e.g., heparin, protamine, saline, pressor drugs, glucose, and antihypertensives).

Since the inception of the Medicaid program in 1965, states have been allowed to "buy into" a private health insurance program for Medicaid recipients, provided this option is exercised on a statewide basis. California, New York, Minnesota, and Washington have chosen this option. The option is not based on patient diagnosis, so there is no way of knowing how many ESRD patients benefit from it. New York Medicaid officials believe that it is sometimes cost-effective for the state to pay for private insurance premiums in lieu of caring for a Medicaid-eligible individual under the Medicaid rate structure. However, it is estimated that only a minority of Medicaid-eligibles have their health costs reimbursed in this manner.

State Kidney Programs

Twenty states administer kidney programs independent of their state Medicaid programs. Nineteen of these programs support a variety of ESRD-related services, from direct patient financial support to public education for organ donation; Michigan's program is basically a data registry (IHPP, 1989a). In Table 7-4, state kidney programs and their services are listed.

Patterns of state kidney disease program expenditures, shown in Table 7-5 are mixed. The Texas Kidney Health Care Program (which is different from the Texas Medicaid program) is unique in offering comprehensive financial assistance in all areas of patient care: transportation, medication, transplant workup procedures, dental care, and transplant follow-up care. It expanded in the early 1980s, experienced a major cut during FY 1986, and has been stable at just under $10 million. Given the budget pressures that many state governments face at the present time, it is probably not realistic to expect that these state kidney programs will increase their financial support for noneligible ESRD patients or that more states will add such programs.6

Other ESRD Programs

The IHS is responsible for providing comprehensive medical care to Native Americans living on reservations. IHS health care benefits vary

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

TABLE 7-4 Services of State Kidney Programs

State

Medicare Copay

Dialysis and Related Treatment

Prescription Drugs

Transportation

Transplant

Transplant Medications

Related Hospital Services

Delaware

X

X

Xa

X

 

X

 

Georgia

X

X

 

 

 

 

 

Hawaii

X

X

X

 

X

X

X

Illinois

X

X

 

 

 

X

 

Indiana

X

X

 

 

 

 

X

Iowa

X

X

X

X

X

X

X

Maryland

X

X

X

 

X

X

X

Missouri

X

X

X

X

X

X

 

Montana

X

X

X

 

X

X

X

Nebraska

X

X

X

 

X

X

X

New Jersey

 

 

a

 

 

 

 

New York

X

Xb

X

 

 

 

 

North Carolina

 

X

Xa

 

 

X

 

Pennsylvania

X

X

X

X

X

X

 

South Dakota

X

X

X

X

X

X

 

Tennessee

X

X

Xa

 

X

X

X

Texas

 

X

X

X

 

X

 

Washington

X

X

X

X

X

X

 

Wyoming

X

X

X

X

 

X

 

TOTAL 19

16

18

16

8

10

16

6

a Includes over-the-counter medications.

b program provides services to home dialysis patients only.

SOURCE: IHPP, 1989a.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

TABLE 7-5 Trends in State Kidney Program Expendituresa

 

Fiscal Year

State

1984

1985

1986

1987

1988

1989

1990

Delaware

 

178,200b

178,200

174,034

185,719

 

 

Georgia

 

600,000

500,000

400,000

400,000

 

 

Hawaii

 

311,170b

424,726b

377,827

436,134

453,639

 

Illinois

1,500,000

1,500,000

1,500,000

1,500,000

1,500,000

1,500,000

1,500,000

Indiana

 

397,653

425,725

371,388

442,606

432,783

 

Iowa

 

838,000

504,000

768,000

904,000

764,000

 

Maryland

2,710,442

3,794,853

2,833,278

3,626,369

4,127,305

 

 

Montana

 

125,000

125,000

125,000

125,000

 

 

Nebraska

669,098

486,384

729,309

726,918

543,629

833,000

 

New Jersey

 

438,000

438,000

438,000

438,000

434,000

 

New York

4,775,000

3,057,000

 

 

 

 

 

North Carolina

1,800,000

1,800,000

1,800,000

1,800,000

1,800,000

 

 

Pennsylvania

8,852,000

8,987,000

8,987,000

7,986,000

6,640,000

 

 

South Dakota

238,479

242,949

245,517

240,346

186,184

209,372

 

Tennessee

1,000,000

1,000,000

1,000,000

1,247,300

 

 

 

Texas

11,913,586

15,549,022

9,548,438

9,969,953

9,973,442

9,985,739

 

Washington

2,208,371c

2,960,000c

 

 

 

 

 

Wyoming

 

 

412,000b

412,000b

412,000b

412,000b

 

a Data reflect information provided by the programs, but some programs had limited expenditure data available.

b Budget.

c Amount reflects a 2-year appropriation.

SOURCE: IHPP, 1989a.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

from year to year and from area to area, based on area-determined priorities and the annual congressional appropriation to IHS. IHS does not maintain its own dialysis facilities, but units managed by private contractors have been established within several IHS hospitals. In recent years, ESRD costs not covered by Medicare or other third parties have placed an increasing burden on the IHS budget.

The DVA provides dialysis treatment for slightly fewer than 3,000 veterans in DVA hospitals and satellite hospital programs.7 Although the distribution of DVA patients between those eligible and not eligible for Medicare coverage is unknown, it is believed that most DVA ESRD patients are eligible. They apparently choose DVA treatment to avoid Medicare deductible and copayment liabilities. Thirteen DVA dialysis units are also certified by Medicare for reimbursement of treatment for a small number of non-DVA Medicare ESRD patients.

The number of DVA centers has declined slightly in recent years, but the number of DVA center dialysis patients remained stable at about 3,300 patients from 1982 through 1985, and then declined to 2,553 in 1989; the number of patients in satellite facilities ranged from 302 to 375 for the years 1982 through 1988. DVA ESRD expenditures grew from $105 million in 1980 to $151 million in 1986, then declined to $122 million in 1989 (Table 7-6). A DVA dialysis program that is shrinking in numbers of patients and expenditures could not absorb the growing number of Medicare noneligible ESRD patients, even if veterans' eligibility were not a problem.

State Medicaid programs, then, constitute the first line of financial support for ESRD patients who lack Medicare coverage. The extent and adequacy of state Medicaid ESRD benefits compared to Medicare coverage are not known in detail. It is known that states exercise discretion regarding Medicaid eligibility criteria and covered services and that the resulting variability severely limits access to treatment financing for ESRD patients in some states. (It is also known that state Medicaid programs are under budgetary constraints of varying severity and are subjected to an increasing number of mandated benefits.) The 19 state kidney programs vary substantially in funding and provide relatively modest financial support to ESRD patients not eligible for Medicare. The IHS faces a number of budgetary priorities that can be adversely affected by ESRD expenditures. The DVA resources for ESRD are shrinking, as is the number of DVA ESRD patients.

Conclusions and Recommendations

The available evidence on ESRD patients who are reported as not eligible for Medicare coverage points to the following conclusions. First, little is known about these patients, and their demographic characteristics, health status, and socioeconomic profiles should be examined carefully.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

TABLE 7-6 Department of Veterans Affairs (DVA) Expenditures for Dialysis Patients, 1980–89

 

1980

1981

1982

1983

1984

1985

1986

1987

1988

1989

Total DVA expenditures (millions of dollars)

104.9

107.9

114.3

120.4

132.7

148.4

150.8

143.4

129.1

121.7

Total patients

3,131

3,171

3,330

3,327

3,337

3,327

3,195

3,157

3,132

2,878

Center patients

2,879

2,887

3,011

3,008

3,030

3,025

2,893

2,818

2,757

2,553

Satellite patients

252

284

319

319

347

302

302

339

375

325

NOTE: As of December 31 of the calendar year.

SOURCE: Neil Otchin, Department of Veterans Affairs, personal communication, June 1990.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

Second, the proportion of ESRD patients reported as not eligible for Medicare coverage, having been stable for some time, may now be increasing and varies substantially by state and city. Third, the absolute number of reported noneligibles has more than doubled in the past decade. Fourth, several major sources for financing the ESRD care of reported noneligibles, such as the DVA, the IHS, and state kidney programs, are stable or shrinking. State Medicaid programs have thus become the payer of last resort for reported noneligible ESRD patients. Although quite adequate in some states, Medicaid coverage for ESRD in other states is virtually nonexistent. Furthermore, Medicaid programs vary in coverage and eligibility according to state discretion.

The committee believes that there is no justifiable basis for a ''near-universal'' Medicare ESRD benefit that falls short of a benefit for all citizens and resident aliens. Limiting Medicare eligibility for ESRD treatment to those who are fully or currently insured under Social Security or entitled to monthly benefits puts some excluded individuals at risk of death from ESRD. The U.S. government, therefore, having assumed the responsibility as principal payer for ESRD treatment for over 90 percent of the country's population, should extend that coverage to all citizens and resident aliens. An estimate of the additional expenditures required to finance this recommendation is found as an appendix to this chapter. (Undocumented aliens are generally not eligible for Medicare benefits under existing statutory authority; the committee does not recommend any change in this area.3)

A large share of Medicare ESRD benefits is paid through the Part B Supplemental Medical Insurance (SMI) Trust Fund. However, the SMI Trust Fund is financed by a combination of beneficiary premiums and general revenues, unlike the Part A Hospital Insurance Trust Fund, which is financed by a portion of the Social Security payroll tax. It is doubly ironic, then, that current eligibility criteria for ESRD treatment exclude some Americans from coverage on the basis of their tie to Social Security, even though much of the benefit is financed from the income tax, a broader tax than the payroll tax.

The committee recommends, as a matter of equitable treatment of all individuals with ESRD, that Congress modify the criteria for Medicare eligibility for ESRD patients and extend the entitlement to all citizens and resident aliens.8

MEDICARE-ELIGIBLE ESRD PATIENTS

ESRD patients who are eligible for Medicare benefits also confront some problems of access to care. This section examines the specific access prob-

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

lems of pediatric and elderly ESRD patients, and general barriers to information, insurance, rehabilitation services, transportation, and preventive services.

Pediatric Patients

Access to care is particularly important for the pediatric ESRD patient because early diagnosis and treatment so strongly affect prognosis and outcome. Current Medicare entitlement criteria do not apply to the treatment of children with progressive irreversible renal insufficiency until they reach the ESRD stage. Consequently, many pediatric patients enter the Medicare ESRD program suffering from potentially avoidable clinical consequences of severe chronic renal failure. Quality of life is adversely affected, and the treatment of these problems is often difficult and inadequate. Early access to adequate care before renal failure could limit the nutrition-related and growth problems including defective bone formation experienced by ESRD pediatric patients. Such interventions also would be cost-effective.

Compared to the entire ESRD population, the pediatric ESRD population is less likely to be covered by Medicare. The North American Pediatric Renal Transplant Cooperative Study (Alexander et al., 1990) found that 13 percent of 754 transplant patients under age 18 were not Medicare-eligible, a rate much higher than the reported national rate of 6 to 7 percent for all ages. Four groups of pediatric patients who are not currently eligible for Medicare entitlement include (1) children of young, usually unwed, mothers receiving public assistance; (2) children of nonworking single parents (usually not working because of family responsibilities) who do not participate in the Social Security system; (3) children of non qualifying intact families; and (4) children of undocumented aliens who are permanently residing in the United States. The effects of a lack of Medicare coverage on access to needed care are not known. Coverage through non-Medicare sources is often inadequate, however, and the expenses for this younger population are generally higher than for the general ESRD population because of the greater complexity of their care.

Preventing adverse outcomes in children is strongly related to the early treatment of chronic renal failure before ESRD is reached, which can delay or prevent progression to ESRD. If a child reaches ESRD, then transplantation is the best treatment. The European Dialysis and Transplant Association (EDTA) evaluated young adults who entered renal replacement therapy as children (Rizzoni, 1989). The data indicated that most disabilities (motor, auditory, and visual) were present at the start of treatment for ESRD, and that treatment resulted in only limited improvement in these disabilities. The EDTA report concluded that the maximum effort should be made to prevent or minimize the development of the disabilities in the period

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

between the initial diagnosis of renal failure and before the initiation of treatment for ESRD.

Many treatment requirements of children can be met only by specially trained personnel, including board-certified pediatric nephrologists, specially trained nurses, nutritionists, social workers, psychologists, and, often, teachers. Such personnel are required to provide essential care, improve quality of life and compliance with treatment, and provide crisis intervention and educational and vocational training for the disadvantaged pediatric patients.

Family income significantly affects the quality of life of the pediatric ESRD patient. The financial demands of caring for a pediatric ESRD patient may place a heavy burden on financially disadvantaged families, as in providing the nutritional prescription required for optimal care or meeting transportation expenses. Thus, in many ways, ESRD in the pediatric population places additional burdens on patients, their families, and caregivers compared to the general ESRD population.

Elderly Patients

In the initial year of the Medicare ESRD program, only 5 percent of prevalent ESRD patients were over age 65 (Rettig, 1980). This proportion has grown over the years to nearly 40 percent of the incident ESRD population and over 25 percent of the prevalent population.

Elderly patients are treated mainly by dialysis; although kidney transplants were once extremely uncommon among the elderly, they have increased in recent years. However, the proportion of elderly patients receiving transplants remains far smaller than for younger patients: of the 17,891 kidney transplants performed in 1988 and 1989, only 2.1 percent (or 371) were in people 65 or older (UNOS, 1990); of all patients with functioning kidneys, only 2.6 percent were over age 65 (IOM, 1990).9 Given limited availability of kidneys and a growing demand for transplantation, it is unlikely that transplantation will become a major treatment modality for the elderly.

Barriers to Access
Information

The Medicare conditions of participation (42 CFR Part 405, Subpart U, 2138) require ESRD treatment facilities to inform patients of their rights and responsibilities, their medical condition, the available services, the unit's policy toward dialyzer reuse, their treatment options, and their suitability for transplantation and home dialysis. The effective provision of information to patients remains, however, a matter of concern to many.

Patients attach a high priority to information about their disease, health

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

status, and treatment, as the focus groups reflected in Chapter 2. Although they need this information soon after the initial diagnosis of ESRD, this is not always an optimal time to receive information. Patient receptivity to information may be affected by their physiological, emotional, and health status during this period. Patients also differ in their information-seeking behavior, with some being more active than others.

Physicians and other health professionals differ in their ability and inclination to communicate with their patients. Many routinely provide information to patients about their disease and treatment options. Moreover, they do so with awareness of the effect of health status on receptivity and of personality on information seeking. Not all providers do equally well in communicating to patients. However, respect for patients should lead all physicians and caregivers to place a high value on conveying information to patients about their health status and treatment options. Although peer education is very useful to new ESRD patients, they rely heavily on their physicians to educate them and their families.

Information about transplantation is a recurring concern of many patients. Some patients actively ask about transplantation, but many do not. Newmann and colleagues (1989) conducted a study of 300 dialysis patients and their information-seeking behavior. Most patients, they found, had discussed transplantation with their nephrologist, but few understood the procedure, and less than one-third had direct contact with someone from a transplant center. Black patients felt less competent than whites to decide about transplantation and were less inclined to talk to their nephrologist about the procedure; they seldom had access to a transplant surgeon.

Here again, physician behavior differs. Some physicians actively inform patients about transplantation, some refer patients to transplant physicians and surgeons for evaluation, and some shield patients from such information. Since dialysis patients have fewer independent sources of information about transplantation, nephrologists can easily encourage or dampen their interest by subtle interpersonal communication. Thus, nephrologists must take the initiative and responsibility to inform their patients.

Although existing regulations appear adequate, implementing procedures may be needed in some situations for referring ESRD patients to transplant centers for assessment. The Health Standards and Quality Bureau of HCFA is actually addressing the referral issue as part of its quality assurance efforts (discussed in Chapter 12). Nephrology training programs, fellowship programs, and continuing education programs can often be strengthened regarding kidney transplantation.

Transplant centers can also provide better follow-up information on transplant patients to referring nephrologists and dialysis units, thus increasing patient referrals. This might include working with dialysis unit staff to teach patients about transplantation on an ongoing basis. Training programs with an

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

emphasis on patient education for dialysis nurses, technicians, and social workers could also be useful in this respect.

The committee recommends that the provision of information and education programs about choices among the various treatment modalities, including transplantation, be provided to all patients at all ESRD facilities. The presence of effective patient education should be documented and recognized as a necessary service by reimbursement policy.

Insurance

Little information exists on the availability of insurance to ESRD patients. Hawthorne and co-workers (1991) surveyed Michigan ESRD patients regarding the effects of insurance coverage on access to care. Ninety-four percent qualified for Medicare coverage and nearly 80 percent had some additional insurance, either public or private. These ESRD patients did not differ in Medicare coverage by age or gender, but 95 percent of white patients had such coverage compared to 90 percent of black patients.

Regarding other (non-Medicare) insurance coverage, there were no gender-related differences, but only 62 percent of blacks had such insurance compared to 87 percent of whites. Younger patients were less likely than older patients to have other insurance: 72 percent of those 19 to 40 years had other insurance, compared to 84 percent of those 41 to 60 years as well as those 61 to 90 years. Self-reported medical and physician expenses that were not covered by Medicare or other insurance, such as prescription and nonprescription drugs, outpatient charges, and doctor bills, ranged from zero to $36,000 per year, with an average of $1,072; almost 15 percent reported no out-of-pocket expenses.

In a single-center study, 55 percent of the patients who began ESRD treatment in Dialysis Clinic, Inc.-Cincinnati from 1976 through 1989 lacked private health insurance. Of these, 41 percent were black women. The relative risk of death of patients without private insurance, controlled for other factors, was 50 percent higher than for those with such insurance. That study, performed under contract with the IOM, is the only known analysis that links private insurance coverage to patient outcomes of any kind (Pollack and Pesce, 1990).

The issue of the extent and type of insurance coverage of ESRD patients deserves further attention. Analyses of coverage are needed in terms of Medicare only, Medicare plus private insurance, Medicare and Medicaid, and Medicaid only. The questions that need to be addressed are the effects of insurance on access to treatment modality and on patient outcomes. Par-

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

ticular attention needs to be given to those having the least adequate insurance coverage.

Medicare as Secondary Payer In OBRA 1981, Congress made Medicare the secondary payer in the first year of eligibility of an ESRD patient who is covered by an employee group health plan. In the first year, then, the health plan is the primary payer and Medicare assumes copayment liabilities. Medicare regulations were issued several years later, and facility implementation of the provision with non-Medicare third-party payers has occurred subsequently.

The DHHS Office of Inspector General, in a December 1987 report, recommended that the 12-month limit on the Medicare-as-secondary-payer provision for ESRD patients be removed entirely in the interest of consistency with other secondary-payer provisions of Medicare and for cost-saving purposes (OIG, 1987). The cost savings were to be realized by cost shifting from Medicare to the private sector. HCFA, in a September 1987 response to the draft report, basically rejected the proposal.

During 1989 and 1990, several provider organizations advocated extending the secondary-payer provision by varying lengths, the longest being 5 years. The President's budget for FY 1991, submitted to Congress in January 1990, recommended extending the secondary-payer provision for 18 months. Congress, in OBRA 1990, adopted this provision. It also directed the General Accounting Office to study the effects of this provision on patients before any further extension is considered.

Support for Medicare as secondary payer for ESRD patients derives from two basic sources. First, providers generally receive higher reimbursement from private insurers than they do from Medicare. This may be due in part to the limited ability of such insurers to track expenditures for such patients within their claims processing systems or, as providers argue, because they are more reasonable payers than Medicare.

The committee discussed the implications of extending the secondary-payer provision. Its first concern was that a substantial extension, such as 5 years, or eliminating the time limit entirely would substantially weaken the federal government's commitment to the ESRD program and clearly erode public support. The rationale for cost shifting from Medicare to the private sector is far from clear in this context. Such a step is not likely to be in the long-term interest of patients or providers.

The committee's second concern was that at least some non-Medicare payers, as their financial burden is increased for ESRD patients, would respond by seeking ways to avoid this new, unexpected demand. The requirements of risk-based insurance drive them in this direction.

Finally, and most important, the committee is concerned that extending the secondary-payer provision would in time place ESRD patients at risk.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

In particular, patients with employer-based group health insurance are likely to be the most active labor force participants, otherwise healthy individuals, and those most likely to return to work after their illness is diagnosed and their treatment begun. Two problems are likely to arise. If an ESRD patient loses employment, purchasing private insurance with a preexisting condition is likely to be prohibitive. If the employer of an ESRD patient goes "shopping" for a new insurer, as many are doing in the current insurance market (GAO, 1990), the ESRD patient is again likely to be rejected by the new insurer because of the preexisting condition. The net effect is apt to be a stripping away of private insurance as sources of primary and secondary coverage, leaving Medicare as primary and no other party as secondary.

The committee commends the Congress for directing the Comptroller General to study the effects of extending the secondary-payer provision to 18 months for ESRD patients.

The committee recommends that the focus of such a study be the effects on patient access to treatment modalities and services and on patient outcomes.

Transportation

The key service needed by dialysis patients that is not reimbursed is transportation. The distance between a patient's residence or place of work and the site of treatment, the available means of transportation, the average travel time, and the financial resources to meet the travel and patient time costs are important issues to patients. Rural patients, for example, may have more difficulty in reaching a treatment facility than their urban counterparts, and poor, urban patients may have fewer transportation resources than do suburban patients. Little is known, however, about access limits imposed by the costs and availability of transportation.

For a dialysis patient needing treatment three times a week, having to travel long distances can be very troublesome. Among the St. Louis focus-group participants were individuals who traveled almost 100 miles from rural areas into the city for care. Alternatives for rural patients may include home dialysis or moving closer to caregivers. These options may be economically infeasible or medically inappropriate. No literature exists on this subject.

In 1990, Congress considered legislation to provide a special entitlement for dialysis patients with severe mobility problems and whose illness was such that traveling to a treatment facility endangered their lives. Separately, HCFA analyzed high ambulance users among ESRD beneficiaries on the assumption that patients lacking mobility constitute the ambulance-using

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

group of ESRD patients. Transportation costs, although reimbursed by HCFA for ambulance use in some cases, are also borne by state Medicaid agencies in a larger number of cases. OBRA 1990 called for a 3-year demonstration of staff-assisted home dialysis for patients with severe mobility problems.

Rehabilitation Services

The publicly financed Medicare and Medicaid programs cover the elderly, the disabled, and the poor, all of whom are weakly tied to the labor force. As a consequence, Medicare policy is not geared to returning individuals to work, and HCFA has few statutory, organizational, or financial resources to help individuals do so. In fact, in the 1972 statute, ESRD patients are "deemed to be disabled" for purposes of Medicare coverage. Many ESRD patients, once they establish their eligibility for Medicare benefits, apply for Social Security disability status. Eligibility for disability benefits provides monthly income. In early 1990, about one-half of Medicare ESRD beneficiaries between the ages of 18 and 64 were also classified as disabled for purposes of receiving Social Security benefits. Social Security monthly disability benefits, not subject to income tax, often replace income from prior employment. Consequently, problems associated with reentering the labor force lead many patients to regard Social Security disability benefits as their first line of economic support.

Efforts to address the problems of rehabilitation encounter several obstacles. First, ESRD patients are not always able to return to their prior employment, especially to physically demanding jobs. Second, employers are not always receptive to having ESRD patients as employees, for reasons of both dependability and effect on insurance premiums. Third, federal regulations governing the Social Security disability programs provide disincentives to patients' return to work. Finally, Medicare does not finance rehabilitation other than through payment for outpatient treatment, and social services (discussed in Chapter 10) have been decreasing over time.

Rehabilitation services are no more available for kidney transplant recipients than for dialysis patients. Such patients, however, are more likely to be employed. Evans and co-workers (1990) surveyed patients between 30 and 44 months after their transplant. Of those with a functioning primary graft, 44 percent were working either full-or part-time; of patients who had received a second transplant, 44 percent were working; only 18 percent of the patients on dialysis had a job. Age, gender, primary diagnosis, and education of transplant recipients all have an effect on their ability to return to work. Younger transplant recipients are twice as likely to be working than those older than 60; men are 1.5 times more likely to be employed than women; non diabetics are 1.5 times as likely to have a job as

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

diabetics; and college graduates are nearly twice as likely to be working as those with less education.

Rehabilitation services for ESRD patients deserve sustained attention, especially in light of the report that EPO reduces the fatigue of dialysis patients and equips them to engage in more active pursuits, and because transplant patients should be encouraged to take advantage of their better functional status. The issue of rehabilitation also should be examined in the context of all chronic disease patients as the challenges of ESRD are apt to be encountered elsewhere.

Preventive Services

The human and economic burden of kidney failure makes it necessary to consider the access of individuals to services that may prevent ESRD. Reduced access to preventive health care has been postulated as a partial explanation for the enormous burden of ESRD among black Americans (Feldman, 1990). Implicit in this hypothesis is the notion that there exist medical regimens that may be effective in the prevention of ESRD, such as the control of hypertension and the control of hyperglycemia in diabetics. There is also some evidence for the beneficial effects of reducing dietary protein and phosphorus, and the administration of certain medications may be of some value (Feldman, 1990).

Preventive care for blacks, long documented as deficient, has steadily improved over the past decade. DHHS reported that the proportion of blacks seeing a physician annually was 18 percent less than that of whites in 1963 and that this disparity had been virtually eliminated by 1983. The differences between blacks and whites in utilization of many specific types of health care also diminished over this period. Despite these gains and their accompanying improved health outcomes, morbidity among the black population remains, on average, higher than for whites (HCFA, 1984; NCHS, 1987).

Blendon and co-workers (1989) reported on disparities in the use of health services and in health status between blacks and whites. A significantly higher proportion of blacks had not seen a physician within a one-year period. Additionally, despite evidence that serious illness is more common among blacks, their average number of physician visits was lower (3.4 per year) than that of whites (4.4 per year). Blacks with a chronic or serious illness were also more likely to have had no ambulatory physician visits during the previous year (25.1 percent versus 16.6 percent). The figures for blacks and whites with hypertension were 30 percent and 19 percent, respectively. Blacks were also less likely than whites to have any health insurance; for those blacks with coverage, it was less likely to be

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

private insurance. These differences were reduced but still significant when adjusted for self-reported health status and income.

Shulman and co-workers, (1986) investigated the economic barriers to medical care for 4,688 ambulatory patients in Georgia. Nearly one-quarter were hypertensive. Sixteen percent reported occasions on which they could not afford their medications. Blacks were substantially more likely to report this than whites, a phenomenon partially accounted for by the lower mean per-capita income of blacks and their greater prevalence of moderate-to-severe hypertension.

Although barriers to preventive health care are easy to demonstrate, their relationship to the high incidence of ESRD among minority groups is not established. Several investigators have explored socioeconomic status indicators—proxies of access to preventive medical care—and related them to the development of renal insufficiency and hypertensive ESRD. Rostand and co-workers (1989) explored the effects of income and level of education on blood pressure control in an ambulatory-care practice in which hypertensive blacks had a twofold risk of developing renal insufficiency. Neither income nor education predicted the occurrence of renal disease. These data suggest that some of the differences in risk of renal failure among blacks may be due to factors other than differences in access to antihypertensive therapy.

Another study (Whittle et al., 1991) of hypertensive ESRD patients also showed that low socioeconomic status was an independent predictor for the development of ESRD; controlling for it did not eradicate the significant influence that black race had on the occurrence of kidney failure.

Little research has been performed in the Hispanic community regarding access to preventive health care. The San Antonio Heart Study, a community-based study of 1,288 Mexican Americans and 929 whites in Texas, evaluated the prevalence and severity of hypertension among these populations. The prevalence of hypertension adjusted for body weight and socioeconomic status tended to be lower among Mexican Americans. Nonetheless, Mexican Americans had somewhat lower awareness, received treatment less frequently, and had worse control of hypertension than did whites. These findings suggest that socioeconomic barriers to preventive health care services exist in the Mexican American community.

In summary, significant barriers to the acquisition of preventive care have been identified for minority groups, especially for blacks. More research is needed, however, to elucidate the importance of control of hypertension on the development and progression of renal disease. Although barriers to preventive care are accompanied by a significantly impaired health status of the black population, a specific causal relationship between impaired access to care and the predisposition to ESRD has not been established.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

STATE REGULATIONS

Some states have stringent CON regulations, and the committee has examined the implications of CON laws on ESRD patients' access to care.

A major concern with the CON regulations is their effect on the treatment capacity, both at the program level and at the unit level. As defined in Chapter 6, the number of dialysis stations is the measure of capacity. Unit capacity then can be further defined as the number of hemodialysis stations in a dialysis facility that operates two patient treatment shifts a day for 6 days a week.

A survey conducted by the Intergovernmental Health Policy Project of the George Washington University (IHHP, 1989a) identified 15 states (Alabama, Connecticut, Hawaii, Illinois, Kentucky, Maine, Massachusetts, Nebraska, New Jersey, New York, North Carolina, Pennsylvania, Rhode Island, South Carolina, and Washington) and the District of Columbia as having CON regulations affecting hospital-based as well as independent dialysis providers as of June 1989.10 The results of this survey were reviewed and confirmed by Dialysis Management, Inc., Denver, Colorado. Information on state CON programs was then combined with the 1984 and 1988 HCFA facility survey data to generate the following summary statistics.

Nationally, treatment capacity grew at an average annual rate of 8.1 percent between 1980 and 1988 whereas the number of total treatments increased 9.7 percent.11 Station utilization increased slightly from an average of 484 treatments per station in 1984 to 517 in 1988, as Table 7-7 indicates. Utilization of the median facility shifted upward from 465 treatments per station in 1984 to 494 in 1988, a 6 percent increase. Large variations in utilization were noted among states, especially between CON states and non-CON states. In states with CON regulations, utilization increased 16 percent from an average 491 treatments per station in 1984 to 568 in 1988, whereas in states without CON programs the ratios increased only 12 percent.

Using our definition of full capacity as 624 treatments per station per year, the national average utilization rate in 1988 was 83 percent (517/624). States with CON had a utilization rate of 91 percent; states without CON had a 77 percent utilization rate. This CON-related difference in utilization appears to be widening over time: the average difference was 63 treatments per station in 1984, and 89 in 1988.

The substantial increase of the utilization rate over time in the CON states does not appear to be due solely to the growth of the patient population in those states. If anything, the patient population in CON states grew more slowly than in non-CON states between 1984 and 1988. Limited facility capacity (due to CON or other regulations) is more likely to be causing higher utilization rates in the CON states. Experience in California,

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

TABLE 7-7 ESRD Facility Capacity and Utilization, 1984 and 1988

 

Total No. of Stations/Unit

Total No. of Patients/Unit per Year

No. of Hemodialysis Treatments/Unit per Year

Hemodialysis Treatment/Station Ratio

In-Center Patient/Station Ratio

 

1984

1988

1984

1988

1984

1988

1984

1988

1984

1988

National average

13.2

13.2

60.8

61.2

6,641

6,936

484

517

3.6

3.8

Hospital-based

10.9

11.2

55.2

60.0

5,409

6,151

490

535

3.6

3.9

Independent

15.3

14.4

65.6

62.0

7,716

7,406

478

507

3.6

3.8

National distribution

 

 

 

 

 

 

 

 

 

 

10th percentile

5.0

5.0

12.0

13.0

1,268

1,219

204

177

1.8

1.5

25th percentile

7.0

8.0

25.0

25.0

2,894

2,860

345

319

2.6

2.5

Median

11.0

11.0

47.0

48.0

5,224

5,504

465

494

3.4

3.6

75th percentile

18.0

17.0

81.0

83.0

8,996

9,415

601

665

4.5

4.8

90th percentile

25.0

24.0

122.0

126.0

13,658

14,407

776

861

5.6

6.2

States with CON

13.6

13.2

62.4

69.5

6,860

7,771

491

568

3.7

4.2

Hospital-based

11.0

10.9

56.8

64.3

5,583

6,530

502

580

3.7

4.3

Independent

15.7

15.2

67.0

73.9

7,919

8,836

482

558

3.6

4.2

States without CON

10.8

13.3

42.0

54.6

4,782

6,335

428

479

3.2

3.5

Hospital-based

9.5

11.5

40.4

55.0

4,215

5,805

446

491

3.5

3.5

Independent

12.0

14.0

43.5

54.5

5,293

6,552

411

475

2.9

3.5

Example—CON

 

 

 

 

 

 

 

 

 

 

Connecticut

12.1

11.5

62.9

76.3

7,278

9,224

619

885

4.6

6.2

Hospital-based

10.6

10.6

57.4

71.0

6,387

8,526

619

840

4.6

5.9

Independent

32.0

17.5

140.0

113.5

19,752

14,111

617

1203

4.4

8.5

Example—No CON

 

 

 

 

 

 

 

 

 

 

Texas

16.9

16.1

72.8

57.8

8,527

6,979

461

417

3.3

3.1

Hospital-based

13.4

13.9

56.5

44.3

5,862

5,347

415

366

3.0

2.5

Independent

18.5

16.6

80.4

61.4

9,780

7,420

482

430

3.4

3.2

NOTES: Excluded from these data are transplant-only, backup-only, and inpatient-only facilities, as well as those reporting no treatment. The number of patients includes both home patients and in-center dialysis patients, unless otherwise noted. The number of treatments refers only to outpatient hemodialysis; peritoneal dialysis treatments and various treatments are excluded from the statistics here.

SOURCE: HCFA Annual ESRD Facility Survey, 1984 and 1988.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

Florida, Georgia, Tennessee, and Texas in the mid-1980s also supports such a hypothesis. In those states, as soon as the CON regulations for ESRD facilities were eliminated, the number of renal treatment facilities grew substantially.

Specific Limits to Access and Geographic Variations

In New England, state health code and CON requirements have tended to be stringent (IHPP, 1989b). For example, Maine requires CON review and approval before a dialysis service is established in an existing health care facility or a freestanding center, regardless of cost. Vermont requires CON review for the establishment of independent dialysis centers, but not the hospital-based dialysis facilities. The strongest regulation of dialysis services occurs in Rhode Island, Massachusetts,12 and Connecticut. In these states, the establishment of either a freestanding or a hospital-based dialysis service requires CON review and approval regardless of cost. Any additions to existing services are also subject to review, even if only one station is added. The exception in New England is New Hampshire, in which all outpatient services are exempt from CON review.

Variations in utilization, and thus their effects on access, among geographic areas are even more evident when Connecticut or New York City is compared to Texas. In Connecticut, a state with CON and other stringent regulations on the provision of health care, there was essentially no growth in either the number of facilities or the number of dialysis stations between 1984 and 1988, whereas the number of patients and dialysis treatments increased significantly. Utilization increased almost 43 percent, from 619 to 885 treatments per station per year, during the 4-year period. The calculated statewide utilization rate was 99 percent in 1984 and 142 percent in 1988. In New York City, the utilization rate was 706 treatments per station in 1984, or 113 percent of defined ''full utilization.'' This increased to 782 treatments per station per year in 1988, or 125 percent of "full capacity."

Texas, whose health care sector has not been highly regulated, eliminated CON in August 1985. A significant increase in dialysis facilities and stations occurred: From 1984 to 1988, facilities increased by almost 70 percent, and stations increased over 60 percent, whereas the patient population increased by only 34 percent. This led to a 10 percent decrease in utilization from 461 treatments per station in 1984 to 417 in 1988.

Hypothetically, differences in facility growth between Connecticut or New York City and Texas might be due partly to geographic differences in the cost of providing dialysis rather than to CON regulations. The experience in Texas alone, however, argues otherwise. Before Texas removed its CON regulation in August 1985, growth in dialysis facilities was very slow, from 78 units in 1983 to 81 units in 1985. After the CON regulation was

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

TABLE 7-8 Connecticut ESRD Patient Log

June 1989: A California dialysis patient was promoted and transferred to Connecticut by his company. He eventually turned down the promotion/transfer because he could find nowhere to dialyze in southwestern Connecticut.

June 1989: A patient from Florida wished to visit his son and grandchildren in Stamford for 2 weeks. He was unable to do so since there was no place within driving distance where he could be dialyzed.

July 1989: A 27-year-old Florida woman wished to attend a conference in New Haven but needed one transient treatment. She did not make the trip because she could not be treated.

October 1989: The parents of two automobile accident victims (one in critical condition) wanted to visit their children; the dialysis patient father needed temporary treatment; his request was eventually denied and referred to the network.

November 1989: A social worker called to state that she had a woman from Long Island, New York, who was the possible victim of domestic violence. The woman had family in Darien, Connecticut, and wanted to transfer. She was referred to the network and as of January 1990 was still looking for space.

November 1989: A 73-year-old patient in Texas with a life expectancy of about one year wanted to be near her daughter and grandchildren in Darien, Connecticut. A bed had been secured at a local nursing home pending dialysis availability. She was referred to Norwalk and a file was created in case an opening originated.

removed, the number of dialysis facilities increased substantially: 25 new dialysis facilities began to operate in 1986, representing a 31 percent increase from the previous year. This suggests that CON regulations also play a major role in explaining differences in facility growth across states.

Connecticut, in addition to CON, has several other requirements that may limit capacity:13 a required nurse supervisor with no patient load for every dialysis shift; a required nurse-to-patient ratio for dialysis units; and limits on the use of technicians in freestanding dialysis units. Taken together, these requirements impose an economic cost on facilities and limit incentives to expand. The data regarding utilization suggest that access problems can arise as federal reimbursement policies intersect with the cost of state regulations.

What are the consequences of capacity limits in Connecticut? First, dialysis units are unable to accept transients or new patients because of their "full-capacity" status. This is illustrated by Table 7-8, which contains entries from a log of transfers, transients, and requests, prepared by a nurse at one dialysis facility. Second, the percentage of patients treated in Medicare-certified facilities who are not eligible for Medicare coverage, is shown in Table 7-9. Compared to the national average, Connecticut's acceptance of noneligible patients over time has consistently been one-third to one-half the national acceptance rate. This implies either that the state has fewer reported noneligibles presenting for treatment or that the absence of Medi-

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

TABLE 7-9 Percentage of Non-Medicare Total Dialysis Patients by State and Year, 1980–89

 

1980

1981

1982

1983

1984

1985

1986

1987

1988

1989

United States

7.1

6.4

6.1

6.1

6.4

6.7

6.7

7.2

7.3

7.5

Connecticut

4.3

3.4

2.7

4.1

3.9

3.9

3.7

6.2

4.6

4.9

Difference

2.8

3.0

3.4

2.0

2.5

2.8

3.0

1.0

2.7

2.6

Connecticut/U.S.

61.0

53.0

44.0

67.0

61.0

58.0

55.0

86.0

63.0

65.0

 

SOURCE: HCFA, 1980–89.

care coverage discourages their acceptance under circumstances of full capacity. Third, since Connecticut is technically at capacity for in-center hemodialysis, anecdotal reports indicate that continuous ambulatory peritoneal dialysis is the only modality being offered by certain providers. Thus, for other than clinical reasons, capacity limits apparently restrict patient choice to modalities prescribed.

Implications of Regulations for Access and Quality

The data show that capacity growth is constrained and utilization increased in CON states relative to non-CON states. Who benefits from state CON regulation of dialysis units? What are the effects of higher utilization (or productivity) of dialysis units? Existing data permit only a limited response. First, CON results in no direct economic benefit to the federal government: higher utilization does not reduce Medicare expenditures nor does lower utilization increase them. Second, CON confers local monopoly benefits on approved providers, reducing competition among providers and raising barriers to entry. Moreover, the costs of legally defending local monopoly are more easily absorbed by provider chains than by single-owner units. Third, by sanctioning local provider monopoly, CON decreases patient choice of providers and eliminates competition among facilities for patients on the basis of amenities. Held and Pauly (1983) have shown that competition in ESRD program increases the amenities that dialysis patients receive. Fourth, CON regulation provides no assurance of quality and actually shields facilities from the need to compete on the basis of quality. Finally, in some states, CON has contributed to serious access problems.

The committee finds no persuasive reason for the application of state certificate-of-need regulations on dialysis treatment capacity

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

that is regulated mainly by the Medicare payment level. The committee strongly favors the elimination of CON as applied to dialysis facilities, but recognizes that this requires state government rather than federal government action. It recommends that HCFA review with each of the relevant states the effect of CON regulations on ESRD patient access to care in light of national data on utilization.

NOTES

1.  

Public Law 95-292 (June 13, 1978) amended Section 226A of the Social Security Act in the following ways: It removed reference to age 65 as a criterion of eligibility for ESRD coverage; it extended eligibility to those who would be eligible if employment, as defined by the Railroad Retirement Act of 1974, were included as employment under the Social Security Act; it substituted "is medically determined to have end stage renal disease" for "chronic renal disease and ... requires hemodialysis or renal transplantation"; and it added a provision that an individual meeting the foregoing requirements have filed an application for benefits. The Tax Equity and Fiscal Responsibility Act of 1982 (Public Law No. 97–248), Sections 121 and 278, extended Medicare coverage, including coverage for ESRD, to federal government employees.

2.  

Legislation proposed in December 1971 (H.R. 12043, 92d Cong., 1st Sess.) by Representative Wilbur Mills (D-Ark.), then chairman of the House Committee on Ways and Means, called for a renal entitlement that included all citizens and resident aliens. This language was not used in Section 299(I) of the Social Security Amendments of 1972.

3.  

The relationship between United States citizenship and resident alien status and eligibility for Medicare and Medicaid benefits is complicated. An individual may be eligible for Medicare Part A (Hospital Insurance) benefits if he or she has established eligibility for Social Security benefits under Title II of the Social Security Act [Section 1818(a)(3) of the Social Security Act, 42 USC § 1395i-2(a)(3)]. Eligibility for Medicare Part A benefits, for those not eligible under Title II of the Social Security Act, and eligibility for Medicare Part B benefits [Section 1836(2)(B) of the Social Security Act] requires that an individual be a resident of the United States and either a citizen or an alien lawfully admitted for permanent residence who has resided in the U.S. continuously during the five years immediately before applying for benefits. Ordinarily, to qualify for state Medicaid benefits under federal law, an individual must be a citizen or national of the United States or in a satisfactory immigration status [Section 1137(d) of the Social Security Act, 42 USC § 1320b-7(d)], except for emergency care [Section 1903(v) of the Social Security Act, 42 USC § 13966b(v)].

4.  

The medical component of state general assistance programs provided no support for ESRD patients.

5.  

The Medicare-Medicaid tape-to-tape project, which has been administered variously by HCFA's Office of Research, the Office of the Actuary, and the Bureau of Data Management and Strategy (BDMS), was discussed with the HCFA Office of Research project officer as a data source. Under the Office of Research, this project included Medicaid records for 3, 4, or 5 state programs, depending on the year; under the Actuary and BDMS, it included more states. However, merging these data with Medicare data to link the records of dual-eligible and noneligible ESRD patients was judged to be a large and difficult research effort that was beyond the scope of this study.

6.  

In late 1990, the Maryland state kidney program became a target for elimination in that state's budget retrenchment.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

7.  

Satellite dialysis units are typically located in small DVA hospitals that do not have a full nephrology service.

8.  

In December 1990, the New York State Health Department released a report of an advisory committee on ESRD in New York State. That committee recommended that "all U.S. citizens and resident aliens with ESRD should be eligible for Medicare benefits, not just those who meet the [Social Security] work history requirements" (New York State Department of Health, 1990, p. 11).

9.  

The percentage of patients over age 65 who currently have transplants includes those who received transplants before age 65, and thus is larger than the percentage who were over 65 when they received transplants.

10. Since the mid-1980s, several states either have eliminated their CON programs entirely or have exempted certain services from them. The analysis in the text reflects the changes that have taken place through mid-1990.

11.  

The IOM study used the number of stations to measure capacity and the number of hemodialysis treatments (rather than the number of patients) to measure demand.

12.  

Massachusetts, in late 1989 or early 1990, eliminated its Determination of Need program.

13.  

See State of Connecticut, Regulation of the Department of Health Services, § 19-13-D55a, for the licensure of an outpatient dialysis unit and standards for in-hospital dialysis units.

REFERENCES

Alexander SR, Arbus GS, Butt K, et al. 1990. 1989 Report of the North American Pediatric Renal Transplant Cooperative Study. Pediatr Nephrol 4:542–553.


Blendon RJ, Aiken LH, Freeman HE, Corey CR. 1989. Access to medical care for black and white Americans: A matter of continuing concern. JAMA 261:278–281.


Eggers, PW. 1989. Projections of the ESRD population to the year 2000. Proceedings of the Annual Public Health Conference on Records and Statistics . DHHS (PHS) 90–1214, Public Health Service, Washington, D.C., 121–126.

Evans RW, Manninen DL, Dugan MK, et al. 1990. The Kidney Transplant Health Insurance Study. Seattle, Wash.: Battelle Memorial Institute.


Feldman HI. 1990. End-stage renal disease in U.S. minority groups. Paper prepared for the Institute of Medicine ESRD Study Committee. Philadelphia, Pa.


GAO (General Accounting Office). 1990. Health Insurance: Cost Increases Lead to Coverage Limitations and Cost Shifting. GAO/HRD-90-68. Washington, D.C.


Hawthorne VM, Julius M, Kneisley J, Port FK, Dennisot L, Wolfe RA. 1991. Access to medical care in ESRD. Michigan Academician 23:87–97.

HCFA (Health Care Financing Administration). 1980–89. Annual ESRD Facility Surveys. Baltimore, Md.

HCFA. 1984. Report to Congress: Study of Unentitled End-Stage Renal Disease Patients. Baltimore, Md.

Held JH, Pauly MV. 1993. Competition and efficiency in the end stage renal disease program. J Health Econ 2:95–118.


IHPP (Intergovernmental Health Policy Project). 1989a. The Medicaid experience with end-stage renal disease: Findings of a national survey. Report prepared for the Institute of Medicine ESRD Study Committee. George Washington University, Washington, D.C.

IHPP. 1989b. Certificate of Need (CON) Regulation of ESRD Services: Findings of a 50-State Survey. Report prepared for the Institute of Medicine ESRD Study Committee. George Washington University, Washington, D.C.

IOM (Institute of Medicine). 1990. ESRD Staff Analysis of HCFA PIMMIS data. Washington, D.C.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

Laudicina S. 1990. Medicaid coverage and payment of ESRD services. Report prepared for the Institute of Medicine ESRD Study Committee. Washington, D.C.


NCHS (National Center for Health Statistics). 1987. Health. DHHS Publ. No. (PHS)88–1232. Public Health Service, U.S. Department of Health and Human Services. Washington, D.C.

Newmann JM, Held PJ, Hutchinson T. 1989. Access to Renal Transplantation: Patients' Knowledge and Perceptions. Washington, D.C.: The Urban Institute. Washington, D.C.

New York State Department of Health. 1990. End-Stage Renal Disease in New York State: A Report of an Advisory Committee. Albany, N.Y.


OIG (Office of Inspector General, U.S. Department of Health and Human Services). 1987. Amending the Medicare Secondary Payer Provision for ESRD Beneficiaries Could Save the Medicare Program $3 Billion over the Next 5 Years. Draft report. Washington, D.C.


Pollack VE, Pesce A. 1990. Analysis of Data Related to the 1976–1989 Patient Population: Treatment Characteristics and Patient Outcomes. Report prepared for the Institute of Medicine ESRD Study Committee. Cincinnati: Dialysis Clinic, Inc.-Cincinnati.


Rettig RA, Marks EL. 1980. Implementing the End-Stage Renal Disease Program of Medicare. Rept. R-2505-HCFA/HEW, The RAND Corporation, Santa Monica, Calif.

Rizzoni G. 1989. Combined report on regular dialysis and transplantation in Europe, XIX, 1988: Renal replacement therapy in children. Presented at the XXVth Congress of the EDTA-ERA, Goteborg, Sweden, June 11–15.

Rostand SG, Brown G, Kirk KA, Rutsky FA, Dustian HP. 1989. Renal insufficiency in treated essential hypertension. N Engl J Med 320:684–688.


Shulman NB, Martinez B, Brogran D, Carr AA, Miles CG. 1986. Financial cost as an obstacle to hypertension therapy. Am J Public Health 76:1105–1108.


UNOS (United Network for Organ Sharing). 1990. Annual Report on the U.S. Scientific Registry for Organ Transplantation and the Organ Procurement and Transplantation Network, 1988 and 1989. Washington, D.C.: U.S. Department of Health and Human Services.


Whittle J, Whelton PK, Seidler AJ, Klag MJ, et al. 1991. Does racial variation in risk factors explain black-white differences in the incidence of hypertensive end-stage renal disease? Arch Intern Med (in press).

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×

APPENDIX

Estimated Additional Program Expenditures Required for Universal Entitlement of Medicare ESRD Program, 1990–95

Year

Projected No. of Total Patientsa

Non-eligible Patients (7.5%)

Annual Program Expenditures per Enrolleeb

Annual Average EPO Expenditure per Treated Patientc

Midline Estimate of Additional Program Expendituresd (million of dollars)

Estimated Range of Additional Program Expenditurese (million of dollars)

1990

159,800

12,000

26,370

5,500

370

240–480

1991

170,100

12,800

27,161

5,665

400

270–530

1992

181,000

13,600

27,976

5,835

440

290–590

1993

192,100

14,400

28,815

6,010

480

320–640

1994

203,400

15,300

29,680

6,190

530

350–700

1995

214,600

16,100

30,570

6,376

570

380–760

NOTE: All current provisions, such as 12 months of Medicare as a second payer and a 3-year limit on eligibility of transplant patients, are assumed remain unchanged.

a based on midline projections of Eggers (1989).

b Estimate is based on 1987 figure with a projected 3% annual growth. Expenditures on EPO are not included.

c Estimate is based on 1989 HCFA interim reimbursement rate with a projected 3% annual growth. Market penetration of EPO is assumed to be 75% throughout the projection years.

d An estimated 45 to 50% of this estimate will actually be a transfer of funds from other federal programs, such as VA program and federal grants to rate Medicaid programs.

e Based on a low estimate of 5% and a high estimate of 10% noneligible ESRD patients.

Suggested Citation:"Part III: Access, Access Problems of ESRD Patients." Institute of Medicine. 1991. Kidney Failure and the Federal Government. Washington, DC: The National Academies Press. doi: 10.17226/1818.
×
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Since 1972, many victims of endstage renal disease (ESRD) have received treatment under a unique Medicare entitlement. This book presents a comprehensive analysis of the federal ESRD program: who uses it, how well it functions, and what improvements are needed.

The book includes recommendations on patient eligibility, reimbursement, quality assessment, medical ethics, and research needs.

Kidney Failure and the Federal Government offers a wealth of information on these and other topics:

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This book will have a major impact on the future of the ESRD program and will be of interest to health policymakers, nephrologists and other individual providers, treatment site administrators, and researchers.

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