Adherence

My exposure to clinical cases has been limited over the past two weeks, as I have spent my time more on research efforts. Among the patients that I have seen, though, there are some that will stay with me for a long time.

I saw a lady in her mid-40s who acquired HIV via a contaminated blood transfusion during the delivery of her second child, 15 years ago. Although free treatment is available for HIV through government centers, if at all a person living with HIV/AIDS can scrape together the requisite funds, they will do everything in their power to go to a private setting. There is really no insurance to speak of for the common man (up to the lower and middle middle class) so paying out-of-pocket is the only option. A typical day for a doctor at a busy government ART center involves seeing 100-150 patients between 9am and 4pm or so. The quality of the interaction is therefore suboptimal at best.

So the patient I saw was in a non-ART centre setting. She had survived 15 years by paying her way for meds and care. Now, she was failing her second line regimen and her immunity was again waning. When questioned initially about her adherence, she said (like so many of my own patients) that she was doing well. It took only minimal prodding and a look in her still 3/4 full pill blister pack to realize that her adherence was nowhere near the 95-100% we all preach to avoid the development of drug resistance. She indicated that she was stretching out the pills over several weeks because she couldn't afford them any more. What followed was a poignant and haunting exchange between doctor and patient. Her physician asked whether there really was no way she could pay for the meds. She pulled out her mangalsutra and said this is all the jewelry she had left in the world. There was no question, from her tone of voice, about whether selling that particular item was an option. So what then, were they to do when the inevitable immunological failure occurred, she was asked. Her daughter was doing well in college, her son was poised to follow, and she had told them both that mom may be here tomorrow or may not. She was ready for the inevitable and had apparently prepared her family accordingly.

This is a situation that happens all over the world hundreds, if not thousands of times a day. It is something that I was well aware of before this trip. Intellectually, at least. I am quickly finding out that hearing about it and seeing it are two different things. What I saw was a lady who was clinically relatively healthy, intelligent, devoted to her family (despite her husband's frequent suggestions that she kill herself to alleviate the financial burden on the family, including outlining specific methods to do so) and not in a situation that, in the US, would be considered end-stage at all. I have had multiple patients die in the past few years, but none of them fit the profile I saw before me. Depression, other psych problems, ongoing substance abuse, cancer, liver disease and poor social support are what have killed most of my patients. Poverty was the only thing keeping this lady from seeing her grandchildren.

I can hear certain people asking me now, so what? Are you going to save her? How about the next 150 people who come in tomorrow? I guess I won't be doing things too differently. I am not in the business of eradicating poverty. I am an HIV doc. I conclude that there is a lot of work to be done out there, if I am interested. And a lot of ways to contribute. Whatever I do, I hope that when it's my time, I can feel as proud of how I have lived my life as this patient has every right to feel, and that I can face my end with half as much dignity.