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.

R&R

The team is off in Mumbai for the weekend. I am told they went to the Elephanta caves today, something I've always wanted to see ever since reading the associated Amar Chitra Katha as a kid. I am taking a day off myself tomorrow to spend with my family here in Hyderabad.

On the gastronomic front, now that I am back on a regular diet (more like soft mechanical with aspiration precautions) we had another dose of Indian Chinese Wednesday night. It wasn't the best, but I am definitely going to miss that stuff when we get back to Cleveland. Have also been having guavas daily. Still in search of the elusive sapota.


I spent some time today with a social scientist who has done some pretty cool work on HIV prevention. This brings my perspectives on HIV care in India to five: a government-sponsored center for antiretroviral therapy, a tertiary care, academic referral hospital where patients pay for everything before its done, a private "corporate" hospital that serves the upper middle to upper class, a non-governmental organization, and today's social scientist. Each perspective has its unique aspects, but there are some themes that cut across organizations. Everyone thinks that the HIV problem here, despite the recent reduced estimates in prevalence, is spiraling out of control. Everyone also agrees that there is a ton of money floating around, but little accountability for how it is spent. I am surprised to see the universally negative feelings toward most NGOs. The glaring exception, of course, is Sivananda. Opinions on them range from: "they are in it for the money" to "they want to convert people to Christianity" to "they are incompetent". Nobody is particularly happy with the government response either, calling it a bunch of hand-waving. For my part, I am happy to have met people both in the government service and in the private sector who are really devoted to the cause.

Another common complaint here is about the brain drain. This is an often devastating problem in Africa as well. It is interesting to see that in India, this applies disproportionately to physicians. The boom in the tech industry has led to IT people who stay here leading extremely comfortable lives. This obviously does not carry over into medicine, so a lot of people are always finding ways to go overseas. Despite this though, we have come across some incredibly intelligent clinicians.
I feel like working with these guys for a month, in a resource-limited setting where you can't just blindly order tests, would be an invaluable, required rotation in an internal medicine residency. For attendings like me too!
Finally, in answer to the query about tea, if you are only getting tea twice a day in India, you are getting shortchanged. We have had tea pretty much 4 times daily here. Plus coffee. Nice.

New Perspective

Hi everybody,

Hope you all are doing well back home. We're all doing well, and I think I speak for everybody when I say "THANK YOU" to all of you for being so concerned about us. Hearing from all of you has really meant a lot to each one of us.

I think I also speak for everybody on this trip when I say that our experiences over approximately 10 days have really given us some new perspective in a lot of different ways. I think you have all read our blogs from last week regarding our excitement for some of the programs here that really amazed us with their efforts, so I don't need to say more about that aspect of new perspective.

This past weekend, the blasts definitely had their impact. It really is quite a different experience to read or watch the news on CNN each day and hear about the 30 or 40 people across the world who died because of blasts compared to when you're actually in the city where the blasts took place. You see and feel the effect on yourself, the people around you, the city as a whole. This morning, we were scheduled to go to one of the 2 hospitals where a lot of the victims had been taken from the blasts on Saturday night, but the security levels are so high right now, strikes were taking place today nearby, family members are swarming the hospitals, etc. that we were advised to hold off from going to the hospital at least for today. We may be there tomorrow morning, and I can only imagine what things are like right now, especially for the family members of those victims in critical condition. My prayers are with all of them.

Today, we went to NIMS, which is a different hospital here in Hyderabad, and even there, we had a moment of silence and saw a lot of grief on the faces of the medical faculty as one of their doctors had passed away in the blasts. Anyways, I think you all get the idea. Wish we could do something more about it. For now, glad we're alive and well. Let's all pray for the victims and their families.

Continuing along with today, I think we all had quite an educational experience that offered some fresh perspective. We went on rounds today for several hours with one of the medical teams at NIMS hospital. These rounds were GREAT in many ways. Residents (five of them) were not paged or called a single time by a nurse or anybody else for any orders. The attending literally was teaching for 3.5 hours while we were with them, and we left before rounds were over. So how could 3.5 hours of rounds be great for residents with so much work to be done, right? Well, when our group left their group, we also realized that the residents didn't really have any orders to place afterwards, any discharge planning to solve, no to minimal notes (I'm pretty sure none). Only limited things could be done, so there wasn't as much work afterwards. They were just learning from their attending and focused on thinking about their patient's care. After lunch, they had time to come attend lectures (topics included HIV Perspective in India, Candidemia, and Rhinosporidiosis) for a couple of hours (in addition to the one hour conference that we all attended this morning). Imagine if we had 3-4 hours of teaching rounds and 3 hours of lecture/conferences every single day. Obviously, our systems are different - there is only so much that can be done for these inpatients due to the lack of money. Lab tests, imaging, treatment options are all limited due to cost. Before every potential diagnostic test is ordered, the attending discussed the costs involved and whether it would be feasible to pursue further diagnostic testing for these patients. Often times, the efforts were focused on empiric treatment rather than any labs or imaging with the goal being strongly on getting the patient better with what the best clincal diagnosis was rather than using any of the cost on extensive labs or imaging. Not too much focus on evidence based medicine. It really was quite interesting to see. The ward consisted of 20 beds across one huge room (talk about your geographic localization). In this entire room, there were only 2 iv poles hanging - one person getting IV abx and one getting a blood transfusion. Nobody was on nasal cannula. Diagnoses being discussed on these patients included HIV opportunistic infections in the lung (i.e. PCP, pneumonias, TB, fungal infections), malaria, TB, snake bites, leptospirosis, brain mets, lung effusions/lesions, HIV medication complications, DIC, lactic acidosis, etc. Somehow, they all looked fairly healthy. Just an incredibly unique experience.

Not even half way through the trip, eyes are wide open!

Keep in touch,

Vijay