amfAR Policy Statement on Routine HIV Testing (September 2007)
You may download our policy statement in PDF format using the following link (65 kb).
On September 22, 2006, the Centers for Disease Control and Prevention (CDC) released revised recommendations for HIV testing of adults, adolescents, and pregnant women in public and private health care settings1. These recommendations replace CDC’s 1993 Recommendations for HIV Testing Services for Inpatients and Outpatients in Acute-Care Settings and they update portions of CDC’s 2001 Revised Guidelines for HIV Counseling, Testing and Referral as well as the Revised Recommendations for HIV Screening of Pregnant Women2. The objective of the revised recommendations is to make HIV antibody testing a routine component of medical care. amfAR, The Foundation for AIDS Research, believes that it is critical that people know their HIV status, and that this knowledge is important for both early detection and treatment of HIV infection, as well as for the prevention of further HIV transmission.
This document discusses the basis for amfAR’s support of CDC’s revised recommendations for routine HIV testing and highlights certain areas of concern with regard to the implementation of these recommendations.
There are several advantages to routine HIV testing for adults. Given that an estimated one-quarter of HIV-positive people in the United States (approximately 250,000 people) do not know they are infected, routine HIV testing in health care settings will offer new opportunities for them to learn their HIV status. Knowledge of HIV serostatus is important for both treatment and prevention efforts. Additionally, making HIV testing a routine part of health care could help reduce the stigma associated with both HIV testing and HIV infection, thus diminishing a significant barrier to learning one’s HIV status. The broader availability of HIV testing through routine health care services could expand upon the successes that were achieved through the recommendation of universal prenatal HIV screening and, for women found to be infected, of providing antiretroviral treatment to minimize the chances of transmitting HIV to their infants.
Cost and Coverage
The expansion of HIV testing has considerable ramifications in terms of health care coverage and reimbursement for services. For those with private health care coverage, insurers usually pay for diagnostic tests that are ordered as a routine part of medical care3. Under the revised recommendations for routine testing, HIV tests would be included in this category and therefore would likely be covered by insurance unless there is a specific provision against reimbursement of that diagnostic test.
For people with publicly funded health care coverage, reimbursement for routine HIV testing varies by payer. The three main public programs for HIV care in the U.S. are Medicaid, Medicare, and the Ryan White Program. Medicaid, the nation’s health care program for low-income Americans and largest payer of HIV care in the country, covers HIV testing and diagnosis when medically necessary. However, while federal Medicaid law permits coverage of routine HIV screening, it is considered an “optional service” and states therefore have to choose to include it in their Medicaid programs to receive federal matching payments. Ryan White, the nation’s care program for people with HIV who are uninsured or underinsured, may fund HIV testing and diagnosis services and population-based screening in sites that are designated to be “key points of entry” for Ryan White care. To date, however, this funding has been generally limited to those who are HIV positive, affected family members, and those considered to be at risk for HIV4-6. Medicare, the federal health insurance program for seniors and the disabled under the age of 65, only provides coverage of HIV testing and diagnosis when medically necessary (e.g., for those presenting with clinical symptoms signaling HIV infection or if a provider has other reasons for suspecting infection) but does not cover routine HIV screening7. It is unclear whether the Health Resources and Services Administration (HRSA) which administers the Ryan White Program, or the Centers for Medicare and Medicaid Services (CMS), which administers both Medicaid and Medicare, are working to more clearly address the revised guidelines and assess their consistency with current policy. Given the differences across these federal financing systems, there is a possibility that some individuals will fall through gaps in coverage of routine screening.
Because of the priority placed on HIV testing, the President’s FY2008 budget proposes a $93 million increase in funding for the CDC for HIV testing “with the goal of ending the growth in the number of new HIV cases and reducing the future burden of the disease.”8
Increasing the number of Americans who know their HIV status is a central component of the CDC’s strategy for reducing the estimated 40,000 new HIV infections that occur each year in the United States9. Widening the availability and uptake of HIV testing in the United States is crucial for reducing the stigma attached to people living with HIV/AIDS. For those at increased risk of infection, a negative test result may motivate people to adopt and reinforce lower risk practices. Further, routine testing will facilitate greater consideration and protection of the human rights of all those affected by the epidemic.
Issues and Concerns
Despite its support for routine HIV testing, amfAR shares the concerns voiced by other community and advocacy groups that the implementation of the CDC’s revised recommendations may have consequences that inadvertently undermine some of the potential benefits of routine HIV testing. We believe that the following issues must be taken into consideration:
- Access to general medical care for individuals and families that are uninsured or under-insured (e.g., the “working poor”) remains problematic. These individuals will not benefit from routine HIV testing unless testing—and follow-up treatment and care—are appropriately financed.
- The existing need for medical treatment and other care for HIV-infected persons and their families is great, and it is estimated that between 42% and 59% of HIV-infected persons in the United States are not in regular care10. While the Medicare Part D prescription drug benefit has reduced the number of waiting lists for the AIDS Drug Assistance Program (ADAP), waiting lists for treatment persist and may increase11 if routine testing identifies thousands more HIV-infected people, many of whom will be in need of publicly funded treatment and care.
- While the CDC’s revised recommendations explicitly state that individuals would be able to “opt out” of being tested for HIV, community advocates have questioned whether, for certain populations, this will be realistic in practice. Such concerns are most relevant to those who have little or no control over either their medical care or their access to it (e.g., incarcerated people) and to people with lower literacy levels or poorer language skills who may not understand what “opting out” means. Additionally, for incarcerated persons, there are concerns about the respect that will be given to the confidentiality of their test results and the potential negative consequences of testing HIV positive (e.g., segregation, increased stigmatization by correctional staff and other inmates).
- Given the routine consenting processes for general medical tests and limitations on the time that providers can spend with patients/clients, it is feared that insufficient levels of explanation will be given to patients with regard to the meaning of both positive and negative HIV test results. While the previous version of CDC testing guidance required that health care workers (i.e., those administering HIV tests) give at least some explanation and information to patients, the revised guidance pertaining to counseling does not ensure that patients—particularly those testing HIV negative—will receive adequate information about the meaning of their test results.
- With the extension of the CDC’s HIV testing recommendations to adolescents as young as 13 years of age, there is the possibility that some young people who are engaging in risk behavior and who are in need of health services will avoid seeking medical care for fear that they will be required to disclose their behaviors to parents or guardians. This may be particularly true for young people who are engaging in same-sex behavior or in substance abuse and for whom disclosure of their behavior may result in punishment, disenfranchisement, or ejection from familial households… all of which increase vulnerability to HIV infection.
amfAR'S POSITION ON ROUTINE HIV TESTING
With these considerations in mind, amfAR believes the following:
- Adoption of the CDC's guidelines for oral or written consent to HIV testing as a part of routinely obtained general medical consent (versus specific, signed consent for HIV testing) will facilitate the goal of increasing the number of people who are aware of their serostatus. The guidelines should be implemented in a fashion that adequately and appropriately provides for assurance of patient confidentiality and that allows for providers to easily and quickly document receipt of patients' verbal consent for testing.
- All facilities providing routine screening for HIV infection should ensure that patients who want or are in need of HIV counseling (as it pertains to testing procedures, test results, and/or risk reduction) have immediate access to such services. Further, support should be provided to health care providers (particularly those who may be encountering positive screening tests for the first time) to ensure that adequate and appropriate counseling can be delivered when it is needed.
- While public and private insurance coverage of HIV diagnostic testing addresses concerns related to financing of this service, the issue of coverage for treatment and care remains. The practical reality is that, as a result of these guidelines being implemented, many more Americans will discover that they are HIV positive and, thus, in need of treatment and care. The burden of accessing treatment may be felt most severely by those reliant on publicly funded programs that are already overstretched. Substantial increases to federal health care programs—particularly the Ryan White Program, including ADAP—will be needed in order to provide necessary health care services to the HIV-infected people who will be identified through routine testing, as well as to their families.
- The primary benefit of early HIV detection is to provide all who are identified as being HIV infected with appropriate medical treatment and other care. To that end, effective linkages to appropriate HIV treatment and care are required. The Federal government must make greater efforts to address the existing disparities in access to health care that affect HIV-infected populations, particularly those in communities of color. Particular attention should be given to individuals and families who neither qualify for AIDS patient assistance programs (such as ADAP) nor have adequate health insurance coverage to access HIV treatment or general medical care.
- Increased HIV testing will identify individuals who are at elevated risk of HIV infection but who are still HIV negative. In the interest of helping these individuals remain uninfected, health care providers must make concerted efforts to provide risk reduction counseling and referrals to appropriate and accessible services relevant to HIV prevention, such as harm reduction programs, substance abuse treatment, mental health and family support services, and comprehensive HIV risk reduction services.
- Finally, with the extension of the CDC’s recommendations to adolescents as young as 13 years of age, greater effort must be made to provide HIV testing in the context of youth-friendly sexual/reproductive health care services. Such facilities must be able to protect young people’s confidentiality as necessary and appropriate, and should provide young people with the age-appropriate, medically accurate, and comprehensive information necessary to make healthy choices about both preventive behavior and treatment.
In conclusion, amfAR believes that widespread individual awareness of one’s serostatus is necessary to effectively slow the spread of the HIV epidemic in the United States.
The issues raised by the implementation of routine HIV testing that have been discussed above derive from valid concerns that deserve attention and, in some cases, remedial action. Nevertheless, amfAR supports the CDC’s recommendations on routine HIV testing in health care settings and does not make its support conditional to actions having been taken to address these concerns. The advantage of knowing one’s HIV serostatus is overriding, even when these concerns remain to be addressed. Society must address these new challenges as they arise.
amfAR is committed to the goal of ending the HIV/AIDS epidemic and will therefore advocate the implementation of nationwide routine HIV testing while continuing to support improved access to treatment for those infected and to evidence-based prevention services—especially medically accurate prevention education and harm reduction approaches—for all who are at risk of HIV infection.
- Centers for Disease Control and Prevention. Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings. Morbidity and Mortality Weekly Report, September 22, 2006 / 55(RR14); 1-17. Available at: www.cdc.gov/hiv/topics/testing/healthcare/index.htm.
- Centers for Disease Control and Prevention. Revised Recommendations for HIV Screening of Pregnant Women. Perinatal Counseling and Guidelines Consultation, April 26–27, 1999
Atlanta, Georgia. Morbidity and Mortality Weekly Report, November 9, 2001 / 50(RR19); 59-86. Available at: www.cdc.gov/mmwr/preview/mmwrhtml/rr5019a2.htm.
- Centers for Disease Control and Prevention. Questions and Answers for the General Public: Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Healthcare Settings. Available at: www.cdc.gov/hiv/topics/testing/resources/qa/qa_general-public.htm.
- Kaiser Family Foundation. Integrating HIV Prevention Services into the Clinical Care Setting in Medicaid and Ryan White CARE Act Programs: Legal, Financial, and Organizational Issues. December 2004. Available at: http://www.kff.org/hivaids/7205.cfm.
- Health Resources and Services Administration, HIV/AIDS Bureau. Policy Notice - 02-01. The Use of Ryan White CARE Act Funds for Outreach Services and Q & A. Available at: http://hab.hrsa.gov/law/0201.htm.
- Health Resources and Services Administration, HIV/AIDS Bureau. Eligible Individuals and Services for Individuals Not Infected with HIV. Formerly Policy No. 97-01, First Issued: February 1, 1997; June 1, 2000.
- Department of Health and Human Services, Budget for Fiscal Year 2008.
- Centers for Medicare and Medicaid Services. Medicare National Coverage Determinations Coding Policy Manual and Change Report, July 2006, Revision 1.
- Centers for Disease Control and Prevention. Comprehensive HIV Prevention: Essential Components of a Comprehensive Strategy to Prevent Domestic HIV, 2006.
- Kaiser Family Foundation. Financing HIV/AIDS Care: A Quilt with Many Holes. HIV/AIDS Policy Issue Brief, May 2004. Available at: www.kff.org/hivaids/1607-02.cfm
- Kaiser Family Foundation. National ADAP Monitoring Project Annual Report, April 2007. Available at: www.kff.org/hivaids/upload/7619.pdf