HIV Confidentiality and Testing in Illinois for Behavioral and Mental Health Programs

1. HIV Confidentiality and Testing in Illinois for Behavioral and Mental Health Programs What’s the law? What are the Challenges? September 2013

2. Today’s goals • Testing issues—especially “informed consent” • Confidentiality • Duty to warn? • Best practices for support groups • Break for questions a couple of times

3. HIV testing law in Illinois • Testing must include certain pre-test information • Testing must be voluntary and with informed consent

4. Pre-test information • Pretty easy. • “(1) a fair explanation of the test, including its • purpose, potential uses,limitations and the meaning of its results; and • (2) a fair explanation of the procedures to be followed, including the voluntary nature of the test, the right to withdraw consent to the testing process at any time, the right to anonymity to the extent provided by law with respect to participation in the test and disclosure of test results, and the right to confidential treatment of information identifying the subject of the test and the results of the test, to the extent provided by law.”

5. Pre-test info, cont’d • Pre-test information may be provided in writing, verbally, or by video, electronic, or other means.

6. Pre-test info, cont’d • But “must have an opportunity to ask questions.” • So not enough to just hand someone a brochure or sit them in front of a video

7. Informed consent • What the law says: "Informed consent" means a written or verbal agreement by the subject of a test or the subject's legally authorized representative without undue inducement or any element of force, fraud, deceit, duress or other form of constraint or coercion.”

8. Illinois law on informed consent for HIV testing, cont’d • Consent can be written or verbal • Consent can be combined with general consent for treatment • Consent can be opt-out • But in all cases, including opt-out, consent must be “documented.”

9. Informed consent • What the courts say (not specific to HIV testing) • Acknowledgement of Relevant Information: Does the client show evidence of understanding the testing information & its implications? • Appreciating One’s Circumstances: Clients should be able to answer questions about the possible health outcomes for them with and without the test. • Logical Use of Information: Clients should be able to use information in meaningful ways. Does he or she have evidence for their views or do their views show evidence of delirium, dementia or other disorder. • Communication of Choices: This is a universal condition of judging competence. The person must show evidence of preferring one choice over another and is strengthened if that choice remains stable over time

10. Informed Consent—the lawyer’s cop-out • Ultimately a clinical decision • But implications for agency policies • Probably don’t want to institute an opt-out testing program at intake in a detox program

11. Can anyone else consent for the client? • Legal guardian of the person • Agent designated in a health-care power of attorney • Parent of a minor under age 18 (minors can also consent on their own starting at age 12)

12. Can you ever test without consent? • Very rarely • Charged with certain sex crimes • Involved in accidental needle-stick or similar situation with health care or public safety worker • Unable to consent (unconscious?) but needed for diagnosis or treatment

13. Questions?

14. Confidentiality

15. The Illinois Law • The AIDS Confidentiality Act (410 ILCS 305) • Covers testing and confidentiality • New regulations effective May 2012 • Provides greater confidentiality protections that those required under HIPAA

16. First, a detour • Illinois Criminal Transmission of HIV law specifies who MUST be told • Recently amended (August 2012) • A Class B felony if you do not disclose HIV status prior to having anal or vaginal intercourse without a condom • (Used to be much broader, covered “intimate contact and condom use was irrelevant) • Applies regardless of whether HIV is transmitted or not

17. HIV testing and confidentiality belong together: The AIDS Confidentiality Law “(410 ILCS 305/2)(from Ch. 111 1/2, par. 7302) Sec. 2. The General Assembly finds that: (1) The use of tests designed to reveal a condition indicative of Human Immunodeficiency Virus (HIV) infection can be a valuable tool in protecting the public health. (2) Despite existing laws, regulations and professional standards which require or promote the informed, voluntary and confidential use of tests designed to reveal HIV infection, many members of the public are deterred from seeking such testing because they misunderstand the nature of the test or fear that test results will be disclosed without their consent. (3) The public health will be served by facilitating informed, voluntary and confidential use of tests designed to reveal HIV infection. (4) The public health will also be served by expanding the availability of informed, voluntary, and confidential HIV testing and making HIV testing a routine part of general medical care, as recommended by the United States Centers for Disease Control and Prevention. (Source: P.A. 95-7, eff. 6-1-08.)

18. Illinois law is the best in the U.S. • Reason #1 why the best in the U.S. • “Sec. 9. No person may disclose or be compelled to disclose the identity of any person upon whom a test is performed, or the results of such a test in a manner which permits identification of the subject of the test, except….”

19. Exceptions to “No person may disclose” • “The subject of the test or the subject's legally authorized representative.” • “Any person designated in a legally effective release of the test results executed by the subject of the test or the subject's legally authorized representative.” • The public health department for disease reporting • The other health care professionals on the care team • A health care worker or public safety official involved in an incident that might transmit HIV • A foster parent of an HIV+ DCFS ward

20. What about the duty to warn? • “A physicianmay notify the spouse [or partner in a civil union], …provided that the physician has first sought unsuccessfully to persuade the patient to notify the spouse or that, a reasonable time after the patient has agreed to make the notification, the physician has reason to believe that the patient has not provided the notification. This paragraph shall not create a duty or obligation under which a physician must notify the spouse of the test results, nor shall such duty or obligation be implied. No civil liability or criminal sanction under this Act shall be imposed for any disclosure or non-disclosure of a test result to a spouse by a physician acting in good faith under this paragraph. For the purpose of any proceedings, civil or criminal, the good faith of any physician acting under this paragraph shall be presumed. “ • What does that mean? No duty to warn. Only a physician has the ability to warn and then can warn only a spouse or legal partner. • This allowance applies only to physicians, not to nurses, nurse practitioners, pharmacists, or other health care workers.

21. What about parents? • “In the case of a minor under 18 years of age whose test result is positive … the health care provider … shall make a reasonable effort to notify the minor's parent or legal guardian if, in the professional judgment of the health care provider, notification would be in the best interest of the child and the health care provider has first sought unsuccessfully to persuade the minor to notify the parent or legal guardian or a reasonable time after the minor has agreed to notify the parent or legal guardian, the health care provider has reason to believe that the minor has not made the notification. This subsection shall not create a duty or obligation under which a health care provider must notify the minor's parent or legal guardian of the test results, nor shall a duty or obligation be implied. No civil liability or criminal sanction under this Act shall be imposed for any notification or non-notification of a minor's test result by a health care provider acting in good faith under this subsection. For the purpose of any proceeding, civil or criminal, the good faith of any health care provider acting under this subsection shall be presumed. “

22. That’s all the exceptions • Otherwise “No person may disclose.” • But what about school principals? • Different law, part of the STD reporting law. (Remember, reporting to public health is an exception). • Repealed!

23. Enforcement: Reason # 2 why Illinois law is the best in the country Sec. 13. Any person aggrieved by a violation of this Act or of a regulation promulgated hereunder shall have a right of action in the circuit court and may recover for each violation: (1) Against any person who negligently violates a provision of this Act or the regulations promulgated hereunder, liquidated damages of $2,000 or actual damages, whichever is greater. (2) Against any person who intentionally or recklessly violates a provision of this Act or the regulations promulgated hereunder, liquidated damages of $10,000 or actual damages, whichever is greater. (3) Reasonable attorney fees. (4) Such other relief, including an injunction, as the court may deem appropriate.”

24. Enforcement: Some examples

25. A political footnote Sec. 15.1. Sections 1 through 15 [in other words, the entire testing and confidentiality law] of this Act shall not apply to a health maintenance organization nor to any insurance company, fraternal benefit society, or other insurer…….

26. Best practices • Everything you’re already doing for HIPAA • Consent to share information within the agency? • AIDS Confidentiality Act not as broad as HIPAA in allowing sharing within the agency.

27. Support groups Signed consent not to share? Warn about disclosures? Reminder at each meeting? No pressure on participants to share HIV info.

28. Questions?

29. Thank you Ann Hilton Fisher 312 427- 8990 or 1 866 506 -3038 ann@aidslegal.com www.aidslegal.com