Rights to Confidentiality and Privacy – The Law

Dear Alan,

Please accept my apology for missing the group, I really wanted to attend but sometimes the best planned events still get hijacked.

I need some advice that you might be able to help me with.

I’m separated at the moment from my spouse and divorce proceedings are about to start (I’m all fine with that) but my lovely husband has been making gentle and other very clear statements that he will disclose my + status to all my clients and ruin my life if I do anything to upset him. He is a registered 

Dr with the AHPCSA but when I contacted them to ask about Dr/patient confidentiality I was told that it doesn’t extend to spouses and that the law becomes very grey in this matter.

Today he stated that if he finds out I’m having sex he will inform the person that I’m HIV+ and trying to kill them knowingly.

I’m not stupid and know that most of his claims are tactics to keep control over me but we both know that should he go ahead, even if I can prove the contrary, the damage would have been done.

He told his sister about my status as she sent me a SMS today to say she will make it public knowledge should I go against her brother in any way, so the ship has sailed as far as him disclosing my status goes.

I can lose my business and everything if he discloses my status in this way.

Is there any legal protection to stop him...no point in legal action afterwards, I need something that will stop him from disclosing to anyone else.

Sorry for the long message but I think you get the idea of what I mean and need.

If you know of anything or could direct me to a link or anything I will be forever grateful to you.

Kind regards,

P

Dear P, I look forward to seeing you at one of the support meetings again soon.  It is totally against the law and our constitution to disclose the HIV status of another person without their consent.  The Allied Health Professions Council of South Africa (AHPCSA) is incorrect it is not a grey matter as the rights of people with HIV are clearly defined by the South African constitution, as well as their own guidelines. It is very clear based on the law that even a threat to disclose another person’s status is illegal for the purposes that your ex-partner is threatening to do so. 

I recommend you contact the AIDS Legal Network on 0214478435 or visit their website for more details on www.aln.org.za also the AIDS Law project now called + Section 27 would be able to assist you. Visit www.section27.org.za contact details are 011 356-4100.

Also you can contact the Section27 advice centre on 011 356-4117

By doing this now they could assist you to notify your ex that if he continues to threaten you or breaches your right to privacy he will and can face litigation.

To better understand your rights let’s look at what the Laws in South Africa have to say about HIV and confidentiality/privacy;

The South African Constitution

The Constitution of South Africa protects the rights of people living with HIV. It doesn't allow discrimination and protects people’s right to privacy and confidentiality. In South Africa, there aren't any laws that force people to tell others about their HIV status. People who do test positive should tell their partner, so that they can be protected and also have an HIV test. People with HIV/AIDS in South Africa are protected by the Bill of Rights and have the same rights which protect all citizens.

• There can be no discrimination against anyone who has HIV/AIDS.
• Test results cannot be shown to anyone else without the permission of the person who had the test.

The Basic Rights of people living with HIV/AIDS

• People living with HIV infection and AIDS should have the same basic rights and responsibilities as those which apply to all citizens of the country.
• People with HIV infection or AIDS are entitled to make their own decisions about matters that affect their marriage and having children. Counselling about the consequences of their decisions should be provided.
• People with HIV and AIDS have the right to confidentiality and privacy about their health and HIV status.
• Information about a person’s HIV status may not be disclosed to anybody without that person’s fully informed consent.
• After death, the HIV status of the deceased person may not be disclosed to anybody without the consent of his or her family or partner – except when required by law.
• Medical schemes may not discriminate against any person on the basis of his or her state of health.
• People have a moral and legal obligation to tell their sex partners if they are HIV positive.
• Insurance companies may not unfairly refuse to provide an insurance policy to any person solely on the basis of HIV/AIDS status.
•  All people have the right to proper education and full information about HIV and AIDS and how to prevent it.

The Basic Rights of people living with HIV/AIDS at Workplace

• Employers may not discriminate against HIV-positive employees or victimise them in any way.
• No person may unfairly discriminate against an employee in any employment policy or practice (e.g. recruitment, appointment, remuneration, training and development, promotion, transfer and dismissal) on the grounds of his or her HIV status.
• No HIV-positive employee has to disclose his/her HIV status to his/her employer.
• Information and education on HIV and AIDS, as well as access to counselling and referral, should be provided in the workplace.

HPCSA guidelines on patients’ HIV status

Sharing information within the healthcare team about a patient’s HIV status is only permissible if the patient has given consent or if it is clinically indicated.

• Ethics, the South African Constitution (Act 108 of 1996) and the law recognise the importance of maintaining the confidentiality of the HIV status of a patient.
• The test results of HIV positive patients should be treated with the highest possible level of confidentiality.
• Confidentiality regarding a patient’s HIV status extends to other health care practitioners. Other health care professionals may not be informed of a patient’s HIV status without that patient’s consent unless the disclosure is clinically indicated. For treatment and care to be in the best interests of the patient, the need for disclosure of clinical data (including HIV and related test results), to health care practitioners directly involved in the care of the patient, should be discussed with the patient.
•  The decision to divulge information relating to the HIV status of a patient must always be done in consultation with the patient.

The HPCSA states: “In the management of an HIV positive patient it is important that the health care practitioner gives due consideration to other health care professionals who are also involved in the management of the same patient (eg where necessary, and with the patient’s consent, informing them of the HIV status of the patient).”

HPCSA - Disclosure in the public interest

• The National Health Act makes an exception to the rule of confidentiality if non-disclosure of a patient’s personal health information would pose a serious threat to public health.
• HPCSA guidance states that, for disclosure to be justified, the risk of harm to others must be serious enough to outweigh the patient’s right to confidentiality. If you judge that this is the case, you should attempt (if it is safe and appropriate) to obtain the patient’s consent first, but should go ahead with disclosure to the appropriate authorities if this is not forthcoming.
• Carefully document the reasoning beside your decision to disclose, together with details about any discussions you may have had with colleagues in the course of your decision-making

It is hence clear from all of the above that your ex-partner may not disclose or breach your rights to confidentiality and hence disclose your HIV status to 3^rd parties, even if he is a medical practitioner, when the intent or purpose of so doing has but one aim aimed and that is to destroy your rights to privacy and confidentiality. 

He may not disclose your HIV status to persons he suspects you might be engaging with even if the relationship is of a sexual nature unless he has proof that you are engaging sexually without having taken precaution to protect the person from exposure and/or based on the assumption that you are placing the person at risk. He can only do so from a medical practitioner’s responsibility to protect 3^rd parties point of view, if he knows for a fact and has evidence that you are not protecting the 3^rd party (sexual partner). 

He still can only do that after having discussed the matter with you first and attempted to provide you with counselling aimed at correcting your behaviour and only after providing such counselling, if you still refuse to protect 3^rd parties, may he warn you that he has an obligation to breach protect 3^rd parties and hence is considering disclosing your HIV status to the 3^rd party that he knows, for a fact you are placing at risk. Clearly this is not his intent and hence he is simply doing this, not in his medical capacity, but as an avenging ex-lover/partner. And this is against the law.  

It is also important to always remember that one’s right to privacy does not give one the right to place others at risk and hence, keep secrets or tell lies. Informing your sexual partners of your HIV status is your responsibility and you should always insist on taking precautions not to transmit HIV to your sexual partners.         

Love and light

Alan Brand

Employee Wellness Consultant and Specialist HIV and Employee Wellness Training Provider

www.positivelyalive.co.za

A question about PrEP

What is PrEP? PrEP stands for Pre-Exposure Prophylaxis. The word “prophylaxis” means to prevent or control the spread of an infection or disease. The goal of PrEP is to prevent HIV infection from taking hold if you are exposed to the virus. This is done by taking one pill every day. 

These are some of the same medicines used to keep the virus under control in people who are already living with HIV (called Anti-retrovirals). PrEP is meant to be used consistently, as a pill taken every day, and to be used with other prevention options such as condoms.

In several studies of PrEP, the risk of getting HIV infection was much lower—up to 92% lower—for those who took the medicines consistently than for those who didn’t take the medicines.

Dear Alan. Right now, I’m still battling to get my head around the whole I am positive idea... I started seeing a guy a few weeks back, had amazing time together and connected amazingly...

Unfortunately, it seems there are still many people who are not educated about HIV, therefore when we eventually had the discussion around HIV... He ran miles... He does not know about it at all, nor what it means to be undetectable etc...

We have stayed in touch as friends subsequently and I have slowly but surely tried to educate him and talk to him about it and shared a few links with him through your support network however, he is still very scared and sticks to the "stigma" of the past...

I tried to explain to him around using PrEP as well, explaining the significantly reduced risks. But he is now so scared because and his words "I would never have thought you were HIV Positive"... And says he doesn’t want to be with anyone because he doesn’t know anymore. Hopefully in time I can educate him and in general people around the world will become a little bit more educated about HIV and the risks and how to mitigate these risks.  

The questions he asked me, for someone who is 31, were quite scary and clearly showing how little information and knowledge about HIV he has.

But, hopefully when I meet someone special one day and if they are Negative I will be able to have the skills to be better able to discuss the same issues any guidance would be greatly appreciated.

Dear M, thanks for your comments and indeed it is so sad that for over 34 years HIV continues to been an issue of humanity and although we have had to deal this yet still so much ignorance, shame, stigma and denial continues to exist. But before I was diagnosed HIV+ back in 1997 (18 years ago) I too was caught up in ignorance, intolerance and denial. Hence I will continue to remind myself of my own ignorance and denial not to mention my feelings of stigma and lack of knowledge towards those infected back then. This always helps me to remember that people only are interested in education about something when they feel the issue is of benefit to them or will affect them in some way. 

Sadly many simply remain like ostriches with their heads so deep in the sand and notion; "It is not my problem" that one can but only be compassionate and sympathetic at their attitude. It is a protection mechanism of sorts, “what I don't know about I don't have to deal with” mentality. Silly as it might sound perhaps but that the biggest barrier to HIV awareness.

I commend you on taking the stand to make a difference and if only all HIV+ individuals could do that we would be much further down the road to making a real change and getting people to realise that it can happen to anyone and nobody is immune to the HIV virus. If anything the very stance of "It cannot happen to me" is what places most people at highest risk.

Fear is a very real experience and unfortunately for far too long fear has been the only way HIV awareness has been used to no effect. It is simply human nature when presented with fear and no other alternatives but fear to shut down and fall into the trap of ignorance and denial. In 2015 we now have such a better position with so much more at our disposal. We can speak about real ways to prevent transmission such as PreP, and all other treatment as prevention methods (TaSP), condoms, water based lube, undetectable viral loads etc etc etc.

I’m assuming that somebody is going to take the lead in getting the PrEP conversation started. Here are some steps to kicking it off and keeping it moving forward: 

Start with a reminder: I love you. When you’re having a conversation about your relationship, start with reconfirming your foundation. After all, you’re together because you love each other. 

State your intention: This isn’t the time to be a wimp about why you’re starting this conversation. But that also doesn’t mean you’re here to lay down the law. So how about making it clear that this is a decision for you and your partner to make together? You might say something like: “I’ve been thinking about PrEP and what it might mean for us. I want to talk to you about your thoughts. Is that OK?” If your partner isn’t ready to have the discussion, you may need to drop it for now and bring it up again when he/she is ready.

Let your partner talk first: You might already be aware of your partner’s feelings about PrEP, or maybe not. Either way, give your partner a chance to express their opinion first. This approach can help your partner to feel like this really is a conversation and not only an opportunity for you to express your opinion or state the decision you have already made on your own. “I’m really interested to know what you think about PrEP.” 

Listen: Early and often. Conversations are an interchange between two people. You take turns talking and listening. So when your partner talks, really listen to what they’re saying — instead of thinking about what you want to say next and waiting for them to take a breath so you can jump in. If you aren’t feeling listened to, gently ask your partner to do the same. It might help to state what you just heard your partner say, in your own words, to make sure you understand: “So you are saying ______.” Listening is one of the best ways to honour another person.       

Offer to team up on getting informed: Make this an opportunity to look for information together. Share what you learn. Make a list of questions to get more information on. You might also want to meet as a couple with your doctor to talk about PrEP. To kick off the information-gathering: “How about if we get on the Internet and do some research? Where do you want to start?” 

Get to the why question: OK, here goes what might be the hard part. At some point in the discussion, you’re going to need to clearly state why you want to consider going on PrEP, why you want your partner to, or why you won’t. Since you kicked off the conversation, your partner will at some point ask you the “why” question. Again, this is no time for talking around the issue. “Here’s why I think PrEP would be a good idea for me/you/us.” Or, “here’s why I don’t think it’s a good idea.” And then state why. 

Keep listening: The conversation may go smoothly. Your partner may also have been thinking about PrEP and welcome the opportunity to talk about it. On the other hand, some elephants may have been wandering around your living room (one of them named “Trust”) that needs to be identified and discussed. This could get uncomfortable. If so, listen with an open mind. Try to understand your partner’s concerns without being defensive: “I really want to know how you are feeling about this.” Again, it might help to restate what you think you just heard: “So what I think you are saying is _________.” Keep your head in the game even when you’d rather tune out.    

Get clear on life with PrEP: PrEP may not make much of a difference at all beyond providing an additional barrier against HIV exposure. But it may also mean renegotiating some boundaries, or at least being up-front about boundaries that you have kind of been avoiding talking about. As the saying goes, put your cards on the table. Get specific with each other about what your relationship would be like with PrEP. 

Consider this conversation a work in progress: You may need to consider the PrEP decision from a variety of angles before you come to a decision that you can both be comfortable with. Remember: Patience is a virtue. Give your partner time and space to work through his/her concerns on their own as well as with you. Keep the conversation going. 

This may be one of the most important conversations you and your partner have had so far. Approach the PrEP conversation with honesty and with an open mind. Hear each other out. Share information. Try to understand each other’s concerns and expectations. Be patient and kind. Keep talking.

On a personal level let’s consider the HIV partners role in all of this discussion

Do not lose hope as what I have found is the more I became willing to be open about my status, coming to a slow acceptance of the reality myself, I found myself surrounded by love and acceptance from others. Daily I dedicated my life to making a difference in the attitudes and experiences of others towards the realities of HIV and AIDS. On this path for the one or two people that I discovered that rejected me or turned away in fear many more came towards me with love, embracing the ability to gain knowledge and hence have become part of the solution rather than through ignorance continuing to contribute to the problem.

Learning to again love myself and accept the virus through the tools I gained I found others embracing these tools too for issues in their own lives. For me the major lesson I had to learn and continue to learn afresh every day was that "Forgiveness is the path to self-love, and self-love is the key to inner healing". Forgiving myself for getting infected, forgiving the person that passed the virus on to me (I was not raped I went and through my own decisions and actions I got infected, so I take responsibility fully for that decision but that acceptance has given me the ability to forgive myself), forgiving the virus for entering my life as I never invited it into my body in the first place. 

All of this has released within me the ability to look myself in the mirror and I am able to say to myself, "Alan I forgive you and I love you, you are not a bad person". So I have learnt to love myself again. Through that love and my own acceptance of myself I was able to reach out and ask for help and guidance and have learnt from so many wonderful teachers along the path. As my light of acceptance and love shone bright I believe that it too has attracted others in pain and denial to me. What a blessing! And I do not give HIV the credit for any of this it was the teachers and myself that decided to rise up and be different. I did not sit on a pile of sand and say, “oh poor me, I am going to die”. I chose life and every day I am grateful just for today, for today I have the choice to make this day the best it can ever be.

I wish you too the ability to continue to shine as you already do and I know through your path you too will find the love and acceptance from a person like I have. I met my life partner in November of 1997 and disclosed my status to him, yes he needed his own time to learn and come to acceptance of the situation. Together we have walked different paths at times but always hand in hand. What a blessing that has been. My daughters and family too have had to deal with my status in their own time and in their own way and I am blessed again with love and acceptance.

Start with your own journey of acceptance and learn again to embrace yourself as a unique, special and wonderful person and without a doubt people will be drawn to you and the love you have to share and give. 

Nobody ever said this path is easy but my word, has it been a wonderful experience, I wish the same for you

Alan Brand

Employee Wellness Consultant and Specialist HIV and Employee Wellness Training Provider

www.positivelyalive.co.za