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HIV Disclosure Against My Will In The Church
Feb 22, 2005

Greetings, I am in a very difficult and quite painful situation. I have sought emotional/spiritual guidence from an elder and Bible study leader in my church. I shared with them that I am HIV positive, as well as some really deep struggles relating to my dx. I told them that I am seeing my primary care doctor (who has little experience with HIV but feels competent treating me) but that I am not emotionally ready to see a specialist at this point in time because of my psychological/emotinal state. I even went as far as obtaining a brief note from my doctor that stated that he is treating me and I am receiving appropriate medical care. The problem is that they think I need to see a specialist and that I am actually 'harming' myself by holding off on it [even in spite of the assurance from my doctor]. The elder has said that if I do not allow him to be involved in my medical care, he will have to talk to the other elders for advice on what to do next (sharing my status with them against my will) and basically this awful situation will escalate. These are people who I deeply respect and love, so this reaction comes as a slap across my face. They are so concerned because they care for me but they will not take me at my word concerning my healthcare. I guess I am just wondering if this is illegal is my status is shared with the other elders against my will and without my consent, when I had shared this very private information in confidence? I feel so violated and betrayed and it is weird because they think they are helping me but they are causing a very unnecessary, humiliating, painful situation... I will probably not be allowed to be in leadership in my church any longer because I am not allowing the elders to be involved in my medical care. Is this discrimination---or is it different since it is the church? This all hurts so much. I feel like I am being nailed to a cross.

Response from Ms. Breuer

(This response comes from my own faith experiences as well as from my workplace HIV knowledge.)

Lots of concerned people do the wrong thing when they become paternalistic. I know you don't feel strong right now, but please be clear in telling these folks what you need and do not need from them right now, and reminding them of their legal and moral duty to keep medical information confidential.

I assume/hope that their concern springs from the information that most people living with HIV do better clinically if they receive their care from an HIV specialist. But HIV moves slowly. This is not an emergency. I believe the path to your ability to make that move can best be paved by people who accept you with your diagnosis, make it clear that they love and support you, and see their role as encouragement, not control.

Unfortunately, they are exempt from the Americans with Disabilities Act. But I believe they are subject to the federal HIPAA law, which requires a representative of an agency/employer/organization to keep medical information confidential. (As leaders, they are representatives of the church, not just members.) The fines for unauthorized disclosure are steep and would bankrupt most churches.

Unless the elders are licensed medical providers and you have authorized them to function as your medical providers, what they are doing is called practicing medicine without a license. Threatening you to force compliance is especially unhelpful. There are church families out there who understand the difference between support and control. I know you need support and the familiar sources would be best right now, but I urge you to talk with others who live with HIV in your area to find a referral to a knowledgeable, non-paternalistic faith family in your area. For a person of faith, faith is a vital feature of treatment. What these folks are doing to you could actually undermine your treatment.

Please feel free to print this reply and take it to the church members/leaders who are pressuring you to make a move you are not psychologically ready to make. Invite them to write to me here to dialog about this issue if they wish. I have worked with church families on this issue. You may tell them that I have a degree in theology--because I do. My heart goes out to you.



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