Confidentiality of Testing and Treatment of Adolescents with HIV: A Legal Guide for Clinicians

1. Confidentiality of Testing and Treatment of Adolescents with HIV:A Legal Guide for Clinicians AETC Adolescent HIV/AIDS Workgroup

2. This presentation was developed by the Adolescent HIV/AIDS Workgroup, and its Legal Rights and Entitlements Subgroup, in collaboration with the AIDS Education and Training Centers National Resource Center (AETC NRC).

3. Subgroup Members • David Korman, JD — Subgroup Leader (Pennsylvania/MidAtlantic AETC) • Vera Holmes, LCSW (FXB Center) • Cathy Samples, MD, MPH (New England AETC) • Subgroup Members from AETC NRC • Megan Vanneman, MPH – Subgroup Coordinator • Supriya Modey, MPH, MBBS

4. General consensus • Many adolescents will not seek medical care unless they are assured of confidential services.

5. Support for minors’ rights • Legislation promoted in all states providing confidential medical care for minors with respect to reproductive, sexually transmitted infections (STIs) and HIV/AIDS-related issues by: • -American Academy of Family Physicians • -American Academy of Pediatrics • -Society of Adolescent Medicine • -American College of Obstetricians and Gynecologists

6. Laws vary from state to state • Laws pertaining to confidential medical treatment of minors vary tremendously state to state. • HIV testing and treatment often not specifically addressed.

7. General medical rule: minors are without legal capacity • In general, minors* lack legal capacity to make • medical decisions. • Involvement of parent/guardian often required. • * (generally persons under the age of 18 years)

8. Typical statute • Any person who is eighteen years of age or older, or has graduated from high school, or has married, or has been pregnant, may give effective consent to medical, dental and health services for himself or herself, and the consent of no other person shall be necessary. • (Pennsylvania, 35 P.S. Sec. 10101)

9. Law provides for exceptions • “Non-confidentiality disincentive”= minors may not want to ask for treatment for sensitive matters if believe service not confidential. • Due to “non-confidentiality disincentive,” some exceptions to general rule of non-capacity of minors.

10. Situations where minors might have capacity: • Sexually transmitted • infections • Substance abuse • Reproductive or • contraceptive services • Mental health • interventions • Married

11. HIV may be specifically addressed • Some states— minors’ rights to confidential HIV testing and/or treatment specifically provided statutorily. • Others— unclear.

12. Different requirements in different states • Some states (with specific HIV-related statutes) designate age at which parental/guardian consent not needed (as low as 12 years; as high as 16). • Some states— depends upon clinical judgment of provider (assess minor’s maturity and ability to make rational choices).

13. Caveat • Especially in those states that follow “The Mature Minor Rule,” it is important for the clinician to document carefully: • Minor’s maturity • Reasons for non-disclosure to parent • Minor’s understanding of situation • Minor’s consent

14. Caution: some states provide for mandatory disclosure of positive test • Some states— minor may have right to HIV testing without parent/guardian consent, but positive test result must be disclosed to minor’s parent/guardian.

15. Dilemma • Informing minor of obligation to disclose positive test result to minor’s parents/guardians might dissuade testing. • Failure to inform minor of limit to confidentiality of test results is unlawful/unethical.

16. Testing vs. treatment • Most states that provide confidential testing of minors do not address issue of confidential treatment of minor who does not want his/her HIV status or treatment disclosed to parent/guardian.

17. Interpretation of other laws dealing with minors’ capacity to make medical decisions • Interpretation of other statutes pertaining to minors’ care (usually pertaining to STIs or substance abuse) crucial in states without specific HIV statute that addresses minors. • * Note: some states do not treat HIV as an STI.

18. Minor’s consent to treatment statutes • Many states— subscribe to “Minor’s Consent to Medical Treatment Acts.” • Acts typically provide circumstances under which minor may be tested or treated without parent/guardian consent.

19. Typical statute with expressed exceptions • Pennsylvania’s statute (fairly representative) • Any minor may give effective consent for • medical and health services to determine the • presence of or to treat pregnancy, and venereal • disease and other diseases reportable under the • act of April 23, 1956 (P.L. 1510), known as the • "Disease Prevention and Control Law of 1955," and • the consent of no other person shall be • necessary.

20. Caveat to PA statute • PA law unsettled about minors’ right to consent until 2002, when HIV infection (as opposed to AIDS diagnosis) made reportable under Infection Control and Prevention Act.

21. How to proceed?

22. Law of your forum • Is there a statute that deals specifically with minors and HIV?

23. Are the “exceptional” conditions met? • Is the patient old enough? • Is this a covered situation? • STI • Substance abuse • Reportable communicable disease • Emancipation

24. Generally, minor has capacity if can: • Understand the situation. • Explain reasons for decisions or actions. • Describe risks and benefits of decision or • action. Regardless of age or “exception” …determine if minor has capacity

25. If legal capacity is absent … • Determine who has authority for minor. • Usual default is parents (or custodial parent if only one parent available). • Is there a reason for parent(s) not to be involved (e.g., abuse, incest, neglect, absence)? • Is a non-parental guardian already established?

26. Listen to the adolescent • Usually helpful for young person to talk with parent or supportive adult regarding health care decisions. • Why is this minor hesitant? • (Note: the reason given may precipitate mandatory reporting under state law of abuse, etc.)

27. Mandatory reporting • Almost every state requires reporting sexual and physical abuse of minors. • Reporting abuse does not necessarily entail disclosure of HIV status. • Take measures to mitigate risk of disclosing HIV-related information.

28. Resources • Social Services— health care institutions and government • Legal department (e.g., appointment of a non-parental guardian for the child)

29. If adolescent appears to have capacity … • Just for HIV testing? (e.g., but not treatment) • To whom does the test result have to be reported? • Minor should be advised of reporting requirements before testing. • Minor should be advised if legal capacity applies only to testing and not treatment.

30. Reporting for epidemiology • Almost all states require reporting newly discovered HIV infection—confidentially or anonymously (using unique identifiers)–whether the patient is minor or adult. • Collection of that information is for epidemiology only, not for law enforcement. • Important that patient understands this limited disclosure.

31. Institutional caveats to inadvertent disclosure • Who pays for testing and/or treatment? • Will reimbursement through insurer lead to disclosure? • Will mailings to patient be a risk for disclosure? (e.g., insurance company’s Explanation of Benefits) • Will phone calls to patient’s residence be a risk for disclosure?

32. Maintaining confidentiality of minor in treatment • Many times more difficult than just testing. • Almost always requires social service intervention (e.g., housing often a problem).

33. Case Study 1 • 14-year-old female presents with history of consensual unprotected vaginal sexual intercourse. • She wants to be tested for HIV. She indicates that her primary sexual partner is 22-years-old. • She does not want her parents, with whom she lives, to know about testing or her partner.

34. Issues • Can she be tested without parental notice or consent? • If she tests HIV-positive, who must be informed? What do we do next? • Whom, if anyone, must be advised of her activity with the partner?

35. Reflections: can she be tested without parental notice or consent? • Do my state’s laws: • Provide for testing without parental knowledge or consent? • Indicate appropriate age for sexual intercourse? • Have an STI or reportable disease exception?

36. Reflections: If she tests HIV-positive, who must be informed? What do we do next? • Almost certainly, HIV positive tests must be reported by name (but held in confidence) or unique identifier. • What does state law provide for contact/partner notification? • How do we handle treatment for her?

37. Notice to minor’s parents • State law might require notification of positive test result to parents/guardians even without minor’s consent. • Some states mandate parent notification, others permit parent notification, and others forbid it without the minor’s consent.

38. Reflections: Whom, if anyone, must be advised of her activity with the partner? • Is this a reportable incident? • Is this “statutory rape” or “sexual assault” even though “consensual” because she is: • (a) Under age of consent under state law? • (b) Her partner is much older than she?

39. If reportable— to whom? • Law enforcement? • Child/Youth Services? • Parents? • If reportable— just the activity, or the HIV status as well?

40. Caution • The requirements of health care workers for reporting “sexual assaults,” “statutory rape,” “aiding in the delinquency of a minor,” “domestic violence,” “child abuse/neglect,” and the like vary tremendously from state to state.

41. Caution: states differ • In what they designate as a “reportable incident.” • In who they require to report (e.g., physician, administrator, nurse). • In whom must be notified (e.g., law enforcement, child protective services, parents). • In what must be reported (e.g., name of minor, name of alleged perpetrator, alleged acts).

42. Variation • How would your responses differ … • If the minor was homeless? • If the minor was pregnant and in prenatal care?

43. Case Study 2 • 14-year-old child in foster care. • Disclosed history of injection drug use. • Brought to clinic by county case worker.

44. Issues • Can the minor be tested? • What if the minor does not wish to tested? • Who obtains the results?

45. Reflections • Who has medical authority for child? • Case worker? Foster parents? Biological parents? • Can 14-year-old minor be tested involuntarily? • *May depend on importance of testing, • clinical picture, and/or invasiveness of test.

46. Reflections • Results may not automatically go to case worker, foster parents or to child services agency. • In some states, case worker or foster parents only obtain test results if: (a) they generally are authorized to obtain medical information for child; (b) they are in charge of child’s health; and (c) they need to know.

47. Bottom lines: • We must attempt to mitigate the disincentives to minors seeking testing. • Minor’s fear of disclosure to parents or others is significant disincentive. • “Instinctive” public policy in favor of parental notification and involvement often at odds with points 1 and 2.

48. Bottom lines (continued): • Probably disproportionate number of minors at risk for HIV infection, are not desirous of parental notification (compared to other potential medical conditions). • Involvement of supportive services is often advisable to assist in issues of abuse, housing, guardianship, etc.

49. Caveat • Confidential testing of at-risk minors has typically been practice, even in absence of explicit and unambiguous legal authority. • Public health organizations’ support of such testing (and treatment) may be increasingly under attack and vulnerable to judicial limitations (e.g., the changing judicial standards regarding reproductive/sexual privacy in several states).

50. Caveat • These issues are legally and ethically complicated. Document the patient’s understanding, consent, and concerns. • Legal answers vary tremendously from state to state.