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Financing Health Care for Persons with HIV Infection: Guidelines for State Action

Published online by Cambridge University Press:  24 February 2021

Daniel M. Fox
Daniel M. Fox*
Affiliation:
Milbank Memorial Fund
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Abstract

Financing health care for perons with HIV infection is an increasing burden on states and their taxpayers. The major problems of state policy in the 1990s are how to organize and finance both early detection of infection and preventive drug treatment for persons without symptoms and how to provide a full range of health and social services for infected persons whose life expectancy is unknown. This article first describes the shift in the perceptions of HIV infection from a plague to a chronic disease and the implications of this shift for state government. Then it places the history of financing for health care in the context of general health care financing policy during the past decade. Next it describes the history of state action to finance care for HIV infection, especially the use of of Medicaid Waivers, problems of state financing for expensive prescription drugs, and state initiatives, especially in California, Michigan, New Jersey and New York. Finally, the article presents seven policy questions that states should consider in deciding what, if any, legislation or regulations to enact in order to organize treatment and pay some or all of the costs of care for persons with HIV infection.

Type
Articles
Information
American Journal of Law & Medicine , Volume 16 , Issue 1-2: The Harvard Model Aids Legislation Project , 1990 , pp. 223 - 247
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1990

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Footnotes

†

A number of people provided data and informed opinions that have been essential to preparing this article. Their names follow in alphabetical order. It is important to emphasize that none of them is responsible for the author's opinions, including his conclusions about the organization or the jurisdiction for which they work.

References

1 At least thirteen cases of AIDS have been reported in each of the states. CENTERS FOR DISEASE CONTROL, HIV AIDS SURVEILLANCE REPORT 5 (July 1989) [hereinafter HIV/AIDS SURVEILLANCE]. At least 60% of these patients were financed under either Medicaid or stateonly programs of indigent care. See infra note 5 and accompanying text. For a discussion of non-Medicaid spending for AIDS in 42 states, see Rowe & Keintz, National Survey of State Spending for AIDS, INTERGOVERNMENTAL AIDS REPORTS, Sept.-Oct. 1989, at 1-10.

2 These figures were provided to the author by staff of the Health Care Financing Administration [hereinafter HCFA Staff Information]. For a different number, see INTERGOVERNMENTAL HEALTH POLICY PROJECT, STATE AIDS REPORTS, Feb.-Mar. 1989, at 8.

3 Social Security Appropriations Act of 1988/89, 1989 Mich. Legis. Serv. 322, § 1626 (West). For a more extensive discussion of this law, see infra pp. 234-35. The author is grateful to the Hon. David C. Hollister of the Michigan legislature for calling his attention to this initiative and providing him with a history of it. See also Department of Social and Health Services, State of Washington, New HIV/AIDS Insurance Continuation Program (Memorandum June 26, 1989); Department of Health Services, State of California, Medi-Cal's Health Insurance Premium Payment Program (undated memorandum). Lawrence Bartlett provided references for Washington and California.

4 Fox & Thomas, Methods of Projecting AIDS Services Utilization, Slides presented at the Annual Meeting of the American Public Health Association (Boston, Nov. 1989) (unpublished).

5 Fox, & Thomas, , AIDS Cost Analysis and Social Policy, 15 LAW MED. & HEALTH CARE, 186, 203 (1987)Google Scholar (synthesized data from nine studies in Table 4). For a recent summary of data on the burden of costs on public hospitals, see Andrulis, , Weslowski, & Gage, , The 1987 US Hospital AIDS Survey, 262 J. A.M.A. 784, 784-94 (1989)CrossRefGoogle Scholar. For a calculation of federal expenditures, see Winkenwerder, , Kessler, & Stolec, , Federal Spending for Illness Caused by the Human Immunodeficiency Virus, 320 NEW ENG. J. MED. 1598, 1598–1603 (1989)CrossRefGoogle Scholar.

6 However, much of our current knowledge about the effects of state policies may be obsolete.

7 CDC AIDS Surveillance Data Omits One-Third of Current Cases; Total for 1991 May be Underestimated— GAO, 32 The Blue Sheet (F-D-C Reports, Inc.) No. 26, at 3 (June 28, 1989) [hereinafter CDC AIDS Surveillance]; Laumann, Gagnon, Michaels, Michael & Coleman, Monitoring the AIDS Epidemic in the United States: A Network Approach, SCIENCE, June 15, 1989, at 1186.

8 CDC AIDS Surveillance, supra note 7, at 3.

9 For further exploration of this argument in an international context, see Fox, , Day, & Klein, , The Power of Professionalism: Policies for AIDS in Britain, Sweden and the United States, 118 DAEDALUS, 93–112 (1989)Google Scholar.

10 Fee & Fox, AIDS as Contemporary History, J. Soc. HIST, (in press); see also AIDS: THE BURDENS OF HISTORY (E. Fee & D. Fox eds. 1988) (collection of essays).

11 Fox & Thomas, supra note 5, at 189-90; Scitovsky, , Cline, & Lee, , Medical Care Costs of Patients with AIDS In San Francisco, 256 J. A.M.A. 3103, 3103-06 (1986)CrossRefGoogle Scholar; Seage, , Landers, , Barry, , Groopman, , Lamb, & Epstein, , Medical Care Costs of AIDS in Massachusetts, 256 J. A.M.A. 3107, 3107-09 (1986)CrossRefGoogle Scholar; PEAT MARWICK MITCHELL, STUDY OF ROUTINE COSTS OF TREATING HOSPITALIZED AIDS PATIENTS (Greater New York Hosp. Ass'n 1986).

12 Fox & Thomas, supra note 5, at 189-91.

13 OFFICE OF TECHNOLOGY ASSESSMENT, U.S. CONGRESS AIDS AND HEALTH INSURANCE: AN OTA SURVEY (1988); Fox, Policy and Epidemiology: Financing Health Services for the Chronically III and Disabled, 1930-1990, MILBANK Q. SUPP. (in press).

14 Requirements for Supplemental Medical Insurance Enrollment and Entitlement, 42 CF.R. § § 405.205-.226 (1988).

15 Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1985, Pub. L. No. 99-272, § 10001, 100 Stat. 222, 223-24 (1986).

16 50 Fed. Reg. 5,573 (1985) (interim regulations taking effect Feb. 11, 1985).

17 Omnibus Budget Reconciliation Act of 1981, Pub. L. No. 97-35, 95 Stat. 357 (codified in scattered sections of 42 U.S.C.); see 42 U.S.C. § § 1395(j), (x), 1396, 1396(a), (b), (d), (n) (1989).

18 Every state, the District of Columbia and most U.S. territories had received federal funds to purchase AZT by mid-1989. Continuation of the program was pending in Congress at the time this article was written.

19 For documentation of HCFA policy and a description of these calculations, see Fox & Thomas, supra note 5, at 192.

20 Id.

21 Conversation with South Carolina Dep't of Social Services (source elected to remain anonymous); Conversation with Michigan Dep't of Social Services (source elected to remain anonymous).

22 Fox & Thomas, supra note 5, at 187, 189, 190, 205.

23 Id.

24 Id.

25 For a list of sources, see Fox & Thomas, supra note 5, at 186, 189; FINANCING CARE FOR PERSONS WITH AIDS: THE FIRST STUDIES, 1985-88 (D. Fox & E. Thomas eds. 1989).

26 Employment Retirement Income Act of 1974, Pub. L. No. 93-406, 88 Stat. 829 (codified as amended in 29 U.S.C. § § 1001-1461 (1982)).

27 Fox, & Schaffer, , Interest Croups and ERISA: The Politics of Semi-Preemption, 14 J. HEALTH POL. POL'Y & L. 239, 251 (1989)Google Scholar.

28 See Rowe & Keintz, supra note 1, at 1-10.

29 Id.

30 HIV/AIDS SURVEILLANCE, supra note 1, at 5.

31 Id.

32 Benjamin, , Long Term Care and AIDS: Perspectives from Experience with the Elderly, 66 MtLBANK Q. 415, 434 (1988)Google Scholar.

33 National Association of Insurance Commissioners, Medical/Lifestyle Questions and Underwriting Guidelines, MODEL REG. SERV. 60.3-.8 (July 1989).

34 DEP't OF HEALTH, STATE OF NEW YORK, AIDS, NEW YORK's RESPONSE: A 5-YEAR INTERAGENCY PLAN (Jan. 1989) [hereinafter AIDS, NEW YORK's RESPONSE]. Much of the data from other states are in lengthy documents submitted by the states in order to apply for Medicaid waivers. When these applications are approved, the language in them is translated into regulations governing state Medicaid programs. These regulations are then transmitted to providers. Rowe & Keintz, supra note 1 (arraying some of the same data but without any hypotheses about stages of state response).

35 HCFA Staff Information, supra note 2.

36 Id.

37 HCFA staff do not have a list of these states. Its compilation awaits further research.

38 Conversation with New York State Health Department (source elected to remain anonymous).

39 Interview with Kevin Seitz, Director, Michigan Medicaid Program (Mar. 1989) [hereinafter Seitz Interview].

40 Rowe & Keintz, supra note 1, at 7.

41 AIDS, NEW YORK's RESPONSE, supra note 34, at 61-67; DEP't OF HEALTH, STATE OF NEW YORK, MEMORANDA, HEALTH FACILITIES SERIES H-38, NH-32, HRF-32 (n.d.).

42 For a description of programs and citations to pertinent laws and regulations, see Kizer, , California's Approach to AIDS, 3 AIDS & PUB. POL'Y J. 1, 1–10 (1988)Google Scholar. The author is grateful to Dr. Kizer for additional information provided in conversation and documents.

43 Id.

44 Conviser, , Coye, & Young, , Funding AIDS Services and Prevention from Public and Private Sources, New Jersey's Experience, 3 AIDS & PUB. POL'Y J. 20, 20–28 (1988)Google Scholar. Robert Hummel, Assistant Commissioner for AIDS Services, provided information about more recent initiatives in New Jersey.

45 Social Securities Appropriations Act of 1988/89, 1989 Mich. Legis. Serv. 322, § 1626 (West); Seitz Interview, supra note 39.

46 Seitz Interview, supra note 39.

47 California and New York City have continuation programs, but only for persons who already qualify for Medicaid.

48 Seitz Interview, supra note 39.

49 Ranthum & Luehrs, AIDS and Medicaid (National Governors’ Ass'n Mar. 1989).

50 The author is grateful to Dr. A.E. Benjamin and Dr. Stephen Rose for useful conversations on this subject.

51 Lakin, Greenburg, Schmitz & Hill, A Comparison of Medicaid Waiver Applications for Populations that are Mentally Retarded and Elderly/Disabled, MENTAL RETARDATION, Aug. 22, 1984, at 187.

52 Benjamin, supra note 32, at 415-34. The author wishes to thank Dr. A.E. Benjamin and Dr. Stephen Rose for useful converstions on this subject.

53 Id.

54 For a more optimistic view of case management for AIDS services in San Francisco, see Benjamin, Lee & Solkowitz, Case Management of Persons with Acquired Immunodeficiency Syndrome in San Francisco, HEALTH CARE FIN. REV., 1988 Annual Supp., at 69-73.

55 Benjamin, supra note 32, at 415-34.

56 Id.

57 Id.

58 Johns, & Adler, , Evaluation of Recent Changes in Medicaid, 8 HEALTH AFFAIRS, 171, 171–181 (1989)CrossRefGoogle Scholar (emphasis added).

59 Id.

60 Conversation with California Department of Health Services (source elected to remain anonymous).

61 Id. He was convinced, not without reason according to sources in the federal government, that HCFA approval of the California waiver was held up for almost a year over this issue.

62 For a summary of these data, see Rowe & Keintz, supra note 1. Other state initiatives include: 1987 Conn. Acts 553 (Spec. Sess.) (creating a pilot program to assist homeless persons with AIDS); 1987 Conn. Acts 789 (Spec. Sess.) (providing grants to agencies for “services including but not limited to education, counseling and prevention“); Act approved July 6, 1988, ch. 88, 1988 Fla. Sess. Law Serv. 380 (West) (mandating education and planning activities).

63 NATIONAL GAY RIGHTS ADVOCATES, ACCESS TO AIDS-RELATED DRUGS UNDER MEDICAID: A FIFTY STATE ANALYSIS (May 1989); State Medicaid Does Not Routinely Cover Treatment IND AIDS Drugs: Private Insurers Often Reimburse, 32 The Blue Sheet (F-D-C Reports, Inc.) No. 27, at 3 (July 5, 1989).

64 INTERGOVERNMENT HEALTH POLICY PROJECT, T-CELL TESTING RECOMMENDATIONS AFFECT PLANNING ACTIVITIES 1-3, 10-11 (July-Aug. 1989).

65 Five other states covered the cost of drugs for seropositive persons in a limited number of cases.

66 NATIONAL GAY RIGHTS ADVOCATES, supra note 63.

67 The first publicly available evaluation data about the New York AIDS Treatment Center program were described at a conference on May 2, 1989 sponsored by the United Hospital Fund. No publications from that conference are available.

68 Conversation with Dr. Michael Grieco, Director of St. Luke's/Roosevelt Hospital Center, in New York City (May 1989).

69 M. Fahs, Research Presented at the Vth International Conference on AIDS, Montreal, Canada (June 1989).

70 see supra note 34; Conversation with New York State Health Department (source elected to remain anonymous); R. Steigbigel & E. Thomas, Report of the Medical Panel for the Nassau-Suffolk Regional AIDS Planning Study (Sept. 1988).

71 Prof. Steven Rose, School of Social Sciences, State University of New York at Stony Brook, is preparing a lengthy monograph synthesizing this evidence.

72 Bennett, , Garfinkle, , Greenfield, , Draper, , Rogers, , Matthews, & Kanouse, , The Relation Between Hospital Experience and In-Hospital Mortality for Patients with AIDS-Related PCP, 261 J. A.M.A. 2975 (1989)Google Scholar.

73 OHIO REV. CODE ANN. § 3724.01 (Anderson Supp. 1989). This law was supported by both advocates for persons with AIDS and by nursing home administrators. Letter from Dr. Sandra Tannenbaum (Mar. 6, 1989); cf Boales, , Approaching the Issue of Long Term Care for Persons with AIDS in Ohio, 3 AIDS & PUB. POL'YJ. 31, 31–33 (1988)Google Scholar; CAL. HEALTH & SAFETY CODE, ch. 1.16, § § 199.70-.75 (West Supp. 1990).

74 For a recent analysis of geographic inequities in entitlement, see Andulis, Weslowski & Gage, supra note 5, at 262.