Can access to care for people living with HIV be expanded?

AIDS and Public Policy Journal

Volumn 13, Issue 2, 1998, Pages 56-74

  Levi, Jeffrey ^a,b  

^a GEORGE WASHINGTON UNIVERSITY MEDICAL CENTER   (United States)

^b White Hse Off National AIDS Policy

Author keywords

[No Author keywords available]

Indexed keywords

ACQUIRED IMMUNE DEFICIENCY SYNDROME; HEALTH CARE ACCESS; HEALTH CARE FINANCING; HEALTH CARE POLICY; HOUSING; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; LAW; MEDICAID; MEDICAL RESEARCH; MEDICARE; MORTALITY; REVIEW;

COMMUNITY SERVICES; DEPARTMENT OF HEALTH AND HUMAN SERVICES; DEPARTMENT OF HOUSING AND URBAN DEVELOPMENT; DEPARTMENT OF VETERANS AFFAIRS; EMPIRICAL APPROACH; FEDERAL GOVERNMENT; HEALTH CARE AND PUBLIC HEALTH; INDIGENTS; MEDICAID; MEDICARE; RESOURCE ALLOCATION; RYAN WHITE COMPREHENSIVE AIDS RESOURCES EMERGENCY ACT; RYAN WHITE COMPREHENSIVE AIDS RESOURCES EMERGENCY ACT 1990; STANDARDS; UNITED STATES;

COST OF ILLNESS; FEDERAL GOVERNMENT; FINANCING, GOVERNMENT; HEALTH SERVICES ACCESSIBILITY; HIV INFECTIONS; HOUSING; HUMANS; MEDICAID; MEDICARE; NATIONAL HEALTH PROGRAMS; RESOURCE ALLOCATION; UNITED STATES; VETERANS;

EID: 0031724604     PISSN: 08873852     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (51)

1. See table 1. In looking at federal care-related spending alone, resources committed to the discretionary Ryan White CARE Act programs increased from $386 million in FY 1993 to $1.15 billion in FY 1998; similarly, automatic spending for the federal share of Medicaid and Medicare entitlements increased from $1.6 billion in FY 1993 to $3.3 billion in FY 1998, and is projected to rise to $3.6 billion in FY 1999. The data used are from tables generated by the U.S. Office of Management and Budget (OMB), Washington, D.C. Readers may contact the author of this article for copies of these tables at the following address: Center for Health Policy Research, 2021 K St., N.W., Washington, D.C. 20006.
2. The Centers for Disease Control and Prevention (CDC) estimates that only two-thirds of the 750,000 people with HIV know their status; J.M. Karon et al., "Prevalence of HIV Infection in the United States, 1984-1992," Journal of the American Medical Association 276 (1996): 126-31; S. Bozzette et al., "Characteristics of HIV-Infected Patients Receiving Regular Care in the U.S.: Results from the HIV Cost and Services Utilization Study (HCSUS)" (poster presented at the 12th World AIDS Conference, Geneva, 28 June-3 July 1998). The HIV Cost and Services Utilization Survey (HCSUS) estimates that only 350,000 people with HIV are in care. It is not the purpose of this article to examine the obstacles to HIV testing - or the related issue of people learning their status late in HIV disease progression. See J. Levi, "Rethinking HIV Counseling and Testing," AIDS and Public Policy Journal 11, no. 4 (Winter 1996): 164-68.
3. The Centers for Disease Control and Prevention (CDC) estimates that only two-thirds of the 750,000 people with HIV know their status; J.M. Karon et al., "Prevalence of HIV Infection in the United States, 1984-1992," Journal of the American Medical Association 276 (1996): 126-31; S. Bozzette et al., "Characteristics of HIV-Infected Patients Receiving Regular Care in the U.S.: Results from the HIV Cost and Services Utilization Study (HCSUS)" (poster presented at the 12th World AIDS Conference, Geneva, 28 June-3 July 1998). The HIV Cost and Services Utilization Survey (HCSUS) estimates that only 350,000 people with HIV are in care. It is not the purpose of this article to examine the obstacles to HIV testing - or the related issue of people learning their status late in HIV disease progression. See J. Levi, "Rethinking HIV Counseling and Testing," AIDS and Public Policy Journal 11, no. 4 (Winter 1996): 164-68.
4. The Centers for Disease Control and Prevention (CDC) estimates that only two-thirds of the 750,000 people with HIV know their status; J.M. Karon et al., "Prevalence of HIV Infection in the United States, 1984-1992," Journal of the American Medical Association 276 (1996): 126-31; S. Bozzette et al., "Characteristics of HIV-Infected Patients Receiving Regular Care in the U.S.: Results from the HIV Cost and Services Utilization Study (HCSUS)" (poster presented at the 12th World AIDS Conference, Geneva, 28 June-3 July 1998). The HIV Cost and Services Utilization Survey (HCSUS) estimates that only 350,000 people with HIV are in care. It is not the purpose of this article to examine the obstacles to HIV testing - or the related issue of people learning their status late in HIV disease progression. See J. Levi, "Rethinking HIV Counseling and Testing," AIDS and Public Policy Journal 11, no. 4 (Winter 1996): 164-68.
5. Perhaps the most compelling argument is that even after the infusion of new resources for the AIDS Drug Assistance Program (which pays for HIV-related drugs for those who cannot afford them and do not have public or private insurance), some jurisdictions report that they must use waiting lists, or that they limiting access to some or all HIV-related drugs. See National Alliance of State and Territorial AIDS Directors and the AIDS Treatment and Data Network, State AIDS Drug Assistance Programs: A National State Report on Access (Washington, D.C.: NASTAD, 1997). The set-aside for ADAP has gone from $52 million in FY 1996 to $285.5 million in FY 1998.
6. See CDC, "Report of the NIH Panel to Define Principles of Therapy and HIV Infection and Guidelines for the Use of Antiretroviral Agents in HPV-Infected Adults and Adolescents," Morbidity and Mortality Weekly Report 47, no. RR-5 (1988).
7. P. Keiser et al., "Decreased Hospital Utilization and Costs Are Associated with Protease Inhibitor Therapy But Not with Nucleoside Therapy" (paper presented at the Fifth Conference on Retroviruses and Opportunistic Infections, Chicago, Ill., February 1988), abstract no. 204; D. Melnick et al., "Impact of Aggressive Management of HIV Infection on Clinical Outcome and Cost of Care within a Health Maintenance Organization" (paper presented at the Fifth Conference on Retroviruses and Opportunistic Infections), abstract no. 201; A. Rohman et al., "Inversion of In-Patient/ Out-Patient HIV Service Utilization: Impact of Improved Therapies, Clinician Evaluations and Case Management in the U.S. Department of Veterans Affairs" (paper presented at the 12th World AIDS Conference, Geneva, 28 June-3 July 1998); J.E. Rawlings et al., "Changes in HIV/AIDS Patterns of Care and Estimated Costs at an Urban Center during the Era of HEART" (paper presented at the 12th World Conference).
8. P. Keiser et al., "Decreased Hospital Utilization and Costs Are Associated with Protease Inhibitor Therapy But Not with Nucleoside Therapy" (paper presented at the Fifth Conference on Retroviruses and Opportunistic Infections, Chicago, Ill., February 1988), abstract no. 204; D. Melnick et al., "Impact of Aggressive Management of HIV Infection on Clinical Outcome and Cost of Care within a Health Maintenance Organization" (paper presented at the Fifth Conference on Retroviruses and Opportunistic Infections), abstract no. 201; A. Rohman et al., "Inversion of In-Patient/ Out-Patient HIV Service Utilization: Impact of Improved Therapies, Clinician Evaluations and Case Management in the U.S. Department of Veterans Affairs" (paper presented at the 12th World AIDS Conference, Geneva, 28 June-3 July 1998); J.E. Rawlings et al., "Changes in HIV/AIDS Patterns of Care and Estimated Costs at an Urban Center during the Era of HEART" (paper presented at the 12th World Conference).
9. P. Keiser et al., "Decreased Hospital Utilization and Costs Are Associated with Protease Inhibitor Therapy But Not with Nucleoside Therapy" (paper presented at the Fifth Conference on Retroviruses and Opportunistic Infections, Chicago, Ill., February 1988), abstract no. 204; D. Melnick et al., "Impact of Aggressive Management of HIV Infection on Clinical Outcome and Cost of Care within a Health Maintenance Organization" (paper presented at the Fifth Conference on Retroviruses and Opportunistic Infections), abstract no. 201; A. Rohman et al., "Inversion of In-Patient/ Out-Patient HIV Service Utilization: Impact of Improved Therapies, Clinician Evaluations and Case Management in the U.S. Department of Veterans Affairs" (paper presented at the 12th World AIDS Conference, Geneva, 28 June-3 July 1998); J.E. Rawlings et al., "Changes in HIV/AIDS Patterns of Care and Estimated Costs at an Urban Center during the Era of HEART" (paper presented at the 12th World Conference).
10. P. Keiser et al., "Decreased Hospital Utilization and Costs Are Associated with Protease Inhibitor Therapy But Not with Nucleoside Therapy" (paper presented at the Fifth Conference on Retroviruses and Opportunistic Infections, Chicago, Ill., February 1988), abstract no. 204; D. Melnick et al., "Impact of Aggressive Management of HIV Infection on Clinical Outcome and Cost of Care within a Health Maintenance Organization" (paper presented at the Fifth Conference on Retroviruses and Opportunistic Infections), abstract no. 201; A. Rohman et al., "Inversion of In-Patient/ Out-Patient HIV Service Utilization: Impact of Improved Therapies, Clinician Evaluations and Case Management in the U.S. Department of Veterans Affairs" (paper presented at the 12th World AIDS Conference, Geneva, 28 June-3 July 1998); J.E. Rawlings et al., "Changes in HIV/AIDS Patterns of Care and Estimated Costs at an Urban Center during the Era of HEART" (paper presented at the 12th World Conference).
11. "IV Drug-Related HIV Spread Contained by Outreach, Needle Exchange," Reuters, 28 May 1997.
12. Kronick et al. have developed a model suggesting a range of $956 to $3646 in prospective additional Medicaid-related costs due to substance-abuse treatment. R. Kronick et al., "Diagnostic Risk Adjustment for Medicaid: The Disability Payment System," Health Care Financing Review 17, no. 3 (Spring 1996): 13.
13. "AIDS Deaths Fall Sharply; New Treatments Credited," Washington Post, 2 February 1998, A2.
14. Karon, "Prevalence of HIV Infection," see note 2 above.
15. Bozzette et al., "Characteristics of HIV-Infected Patients," see note 2 above.
16. A. related issue to the level of demand placed on the care system is at what point in disease progression people with HPV are learning their status - and thus potentially entering the healthcare system. Under the current standard of care guidelines, earlier is better; however, people with HIV often do not enter care early. According to CDC surveillance data, 38 percent of those who were diagnosed with AIDS in 1996 met the case definition because they were already meeting clinical criteria associated with AIDS, not because they had a low CD4 count. CDC, HIV/AIDS Surveillance Report, 8, no. 2 (1966): 17. Additional evidence is provided by Bindman and colleagues in a CDC-funded study, which reported that a majority of people with HIV participating in their survey did not learn their HIV status until within two years of their diagnosis with AIDS; the average period between HIV infection and an AIDS diagnosis is about 10 years. Kaiser Family Foundation, Understanding the Impact of New Treatments on HIV Testing (Menlo Park, Calif.: Kaiser Family Foundation, 1998), 6.
17. A. related issue to the level of demand placed on the care system is at what point in disease progression people with HPV are learning their status - and thus potentially entering the healthcare system. Under the current standard of care guidelines, earlier is better; however, people with HIV often do not enter care early. According to CDC surveillance data, 38 percent of those who were diagnosed with AIDS in 1996 met the case definition because they were already meeting clinical criteria associated with AIDS, not because they had a low CD4 count. CDC, HIV/AIDS Surveillance Report, 8, no. 2 (1966): 17. Additional evidence is provided by Bindman and colleagues in a CDC-funded study, which reported that a majority of people with HIV participating in their survey did not learn their HIV status until within two years of their diagnosis with AIDS; the average period between HIV infection and an AIDS diagnosis is about 10 years. Kaiser Family Foundation, Understanding the Impact of New Treatments on HIV Testing (Menlo Park, Calif.: Kaiser Family Foundation, 1998), 6.
18. Heath Care Financing Administration (HCFA), Office of the Actuary, 7500 Security Blvd., Baltimore, Md. 21244-1850.
19. Health Resources and Services Administration (HRSA), HIV/AIDS Bureau, Division of HIV Services, Rockville, Md.
20. There are significant exceptions. Poor women with HIV may already be on Medicaid if they are AFDC-eligible (now TANF - Temporary AIDS to Needy Families); some elderly Americans with HIV may have been eligible for Medicare prior to being disabled.
21. Bozzette et al., "Characteristics of HIV-Infected Patients," see note 2 above.
22. A.K. Nakashima, "Who Will Pay for HIV Treatment? Health Insurance Status of HIV-Infected Persons" (paper presented at the 35th Annual Meeting of the Infectious Diseases Society of America, San Francisco, Calif., 13-16 September 1997), abstract no. 293.
23. Keiser et al., "Decreased Hospital Utilization," see note 5 above.
24. Menick et al., "Impact of Aggressive Management," see note 5 above.
25. The demographics of those served by Mid-Atlantic Permanente are probably quite different from the Medicaid population; however, the VA population may more closely resemble Medicaid beneficiaries. It must also be noted that these savings are over a short-term period. We do not know the durability of the treatment effect of these new drugs and thus their long-term impact on costs. The author used data from the HCFA Office of the Actuary (see note 12 above) in his computations. Readers may contact the author for further information (see note 1 above).
26. Bozzette et al., "Characteristics of HIV-Infected Patients," see note 2 above.
27. HCFA's estimates of the number of people served by the Medicaid program are based on actuarial estimates, not an analysis of claims data.
28. The federal portion of state Medicaid costs is determined by a formula that compares the state's average per capita income level with the national income average. The federal match cannot be lower than 50 percent or greater than 83 percent. See note 19 above.
29. This is an actuarial estimate of costs incurred by people with AIDS; the costs of those with HIV only is not known. See note 19 above.
30. Not all earnings are included in determining income levels for SSI eligibility. See note 19 above.
31. A simple diagnosis of AIDS is not sufficient to meet the Social Security Administration's definition of AIDS disability. A person with symptomatic HIV infection must show that this severely limits his/her ability to engage in substantial work activity.
32. The current federal poverty level for an individual is $8,050. "1998 Poverty Guidelines for the 48 Contiguous States and the District of Columbia," Federal Register 63, no. 36 (24 February 1998), 9235-38.
33. The states without medically needy programs are: Alabama, Alaska, Arizona, Colorado, Delaware, Idaho, Indiana, Louisiana, Mississippi, Missouri, Nevada, New Mexico, Ohio, South Carolina, South Dakota, and Wyoming. See note 19 above.
34. Medically needy income levels for other high-incidence states are: New York, $575/month; California, $600/month; Florida, $180/month; New Jersey, $367/month. Thus, for example, an individual disabled with AIDS in California could earn $1,850 a month but still be eligible for Medicaid if he/she also had $1,250 a month in medical expenses which is not an unusual amount for a person with HIV/AIDS. See note 19 above.
35. Indeed, an analysis of jurisdictions identified by the National Alliance of State and Territorial AIDS Directors as having had to take emergency measures due to ADAP shortfalls shows that many of these states have no medically needy program or very restrictive income eligibility requirements. See note 3 above.
36. New York State, Medicaid Expenditures for Persons with AIDS, New York State, Federal Fiscal Year 1993 (Albany, N.Y.: New York State AIDS Institute, n.d.); and California Department of Health Services, Demographics and Expenditures for Persons with AIDS 1980-94, part 5 of Medi-Cal Studies in AIDS (Sacramento, Calif.: California Department of Health Services, 1994). (It should be noted that there are relatively few states that have analyzed their HIV-related costs in detail. This makes it hard to estimate the overall cost of HIV to the Medicaid program; it also makes it difficult to assess differences in coverage and costs and what impact this has on outcomes.)
37. New York State, Medicaid Expenditures for Persons with AIDS, New York State, Federal Fiscal Year 1993 (Albany, N.Y.: New York State AIDS Institute, n.d.); and California Department of Health Services, Demographics and Expenditures for Persons with AIDS 1980-94, part 5 of Medi-Cal Studies in AIDS (Sacramento, Calif.: California Department of Health Services, 1994). (It should be noted that there are relatively few states that have analyzed their HIV-related costs in detail. This makes it hard to estimate the overall cost of HIV to the Medicaid program; it also makes it difficult to assess differences in coverage and costs and what impact this has on outcomes.)
38. This is an actuarial estimate made by HCFA of clients served, and costs. While most people with AIDS on Medicare are eligible because of their disability, some percentage of these clients will be eligible because they are over 65. (CDC reports that over 8,113 individuals were 65 or older at the time of their AIDS diagnosis.) The Housing and Urban Development Website: .
39. An individual must meet the SSA's definition for AIDS-related disability and must have contributed to Social Security for a specified period of time.
40. Certain self-administered cancer drugs are covered by Medicare.
41. The website of the HRSA HIV/AIDS Bureau is ; HRSA HIV/ AIDS Bureau, Division of HIV Services.
42. Ibid.
43. The duplicated number of clients served in Title I in 1995 is 626,620; in Title II, it is 333,950. The duplicated numbers, however, could reflect the fact that one client is counted several times, because she or he is served by different providers for primary care, ADAP, case management, buddy assistance, etc. Data from a personal communication with Warren Buckingham, HRSA HIV/AIDS Bureau, Rockville, Md. Data from the U.S. Department of Housing and Urban Development Website: .
44. See note 34 above.
45. Ibid.
46. A number of factors are involved; those states with ADAP programs facing the greatest fiscal pressures, in addition to lacking medically needy Medicaid programs (or with restrictive eligibility for medically needy status), also may not have contributed to the ADAP programs from state resources or their Title II base.
47. Indeed, some HOPWA money is used for direct primary care. Several jurisdictions are using HOPWA funds to support their ADAP programs.
48. United States General Accounting Office, Housing: HUD's Programs for Persons with AIDS (Washington, D.C.: GAO, March 1997, GAO/RCED-97-62). These estimates are based on actual funds expended. The GAO found that only 27 percent of HOPWA's funds had been spent by October 1996.
49. The White House, The National AIDS Strategy 1997, Appendices (Washington, D.C.: The White House, 1997).
50. Department of Health and Human Services Office of Inspector General, Medicaid Managed Care and HIV/AIDS (Washington, D.C.: DHHS, April 1998, OEI-05-97-00210).
51. Other arguments have also been made by some DHHS officials against such an expansion, including concern about the precedent this would set. In fact, it would seem logical for DHHS to support any budget-neutral expansion of Medicaid, regardless of disease, assuming the objective is to maximize the number of people served by Medicaid. And were this the policy of DHHS, the additional concern of being attacked for "HIV exceptionalism" - that special privileges were being offered people with HIV that are not offered people with other diseases - would be eliminated.