Sunday, July 11, 2010

HIV+ And Healthy Without Meds?

In addition to teaching the Health Literacy class this summer, the medical director of PSI asked me to help her complete a formal assessment of all 66 of the patients' health literacy levels to be included in their medical charts. I have been calling patients to my office one by one to give them the assessment, which consists of basic questions about health knowledge and HIV. For example, one of the questions I ask the patients is to recall all of the medications they are currently taking to treat their HIV. I then check what they have told me against their medical records to see if they answered correctly.

Yesterday, as I was completing an assessment with one of the patients, he told me he wasn't taking any medication to treat his HIV. At first I thought he was joking or mistaken, but he asserted that he has made the decision not to start antiretroviral therapy (against medical advice). Trying to hide my disbelief, I asked him why. He explained that he did not want the side effects from the medication, was not afraid of dying, and that he would pass away when God decided it was his time to go. He said he was diagnosed as HIV+ in 1996, and has been relatively healthy since (although, to live at PSI you must have full-blown AIDS). I asked him if he had any children, to which he responded that he had a 24 year old daughter. As a 24 year old woman myself, I told him I would want to see my own father live as long of a life as possible. He made the counterpoint that he didn't wish to extend his life if his daughter would have to watch him suffer and care for him for a longer period of time, and restated that God knew what was best for him and his family.

This patient has had the virus for at least 14 years; the average person will become very ill or die within 8-10 years of contracting HIV if untreated. Although the patient attributes his health to God's work, I think it is probably because he is what is called a "long-term nonprogressor." These people usually 1) have receptors on their T cells that do not easily bind to HIV so that it is more difficult for HIV to infect T cells, or 2) possess a specific immune protein that allows their immune system to more easily detect when HIV proteins are being made inside of cells. Both of these are due to beneficial mutations in the patient's DNA, and long-term nonprogressors can live with HIV for years and years without being affected by the virus.

As a medical student, it is hard for me to understand people who don't seem to care about improving their health when given the opportunity. And as an agnostic, it is hard for me to understand people who leave things up to "God" rather than take action to solve problems on their own. I found myself becoming incredibly frustrated with this patient's unwillingness to take medication, and this person is not even MY patient! I know that when I am a doctor, many of my patients will be non-adherent to their treatment and ignore my advice. I will have to learn how to effectively deal with this, so that my future patients are as healthy as possible and I can maintain my own sanity.

6 comments:

  1. Thanks for the information about "long-term nonprogressors".

    Hope you do find an effective way to deal. Health and sanity are such precious things.

    In the mid-1990s there started to be fairly effective treatments against HIV/AIDS.

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  2. I didn't know that you also were agnostic. That makes my day :)

    To me, this is an example of the some of the horrid side effects of religion: people delude themselves that their wishes/wants are actually what God wants, and therefore the person thinks (s)he is being selfless. They don't want to stand up for their own decisions, they use God as a shield.

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  3. Adelaide, thanks for your comment!

    Dancing_Scientist, agreed re: religion, and yay agnosticism!

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  4. Very interesting post. On a much smaller scale, I find it frustrating when one of my clients (senior citizens) won't take my advice about improving their heath through better food choices and increasing exercise. I can only imagine how you must feel when you know the science behind the medical community's advice.

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  5. I know! This frustrates me too Mare! Did I ever tell you my Jehovah's Witness story? Basically she had placenta accreta, and instead of getting blood she lost her uterus. It blew my mind.

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  6. Jeanie, that must be tough, especially for senior citizens who are very set in their ways of doing things. I imagine it would be hard to get someone to change their diet after eating unhealthy food for 80 years!

    Erin, NO you never told me that!! So crazy. I really, really don't understand that way of thinking. I guess we still have to respect that as medical professionals. :\

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