Thursday, July 18, 2013

Second Field Visit - Gopalganj, Bihar

[The guest house where I'm staying has lost power about five times in the past hour, so I'm hoping to post this tonight!]

As the questionnaire for our study of Rural Medical Practitioners ("quacks") and other Private-Sector health care agents in Bihar has been taking shape, we needed an opportunity to get out to one of the districts here that has a very high incidence of Kala-azar.

Our last field visit (in Patna District) was extremely informative, but it gave us the perspective of health care workers that operate in an area where KA is not a significant burden.

Patna to Gopalganj District
This time, Clara, Ishani and I headed northwest of Patna, to Gopalganj, which has many hundreds of KA cases every year. We left about 7AM, crossing the wide Ganges river as we left the city, and arrived in Gopalganj district before noon - occasional heavy traffic and some stretches of really rough road slowed us down.

One of the "vehicles" we passed along the way

When we arrived, we met up with Atul, the local CARE Link Worker, who escorted us around the villages in his territory within Gopalganj. We started at the Manjha Block Primary Health Care Centre, a public facility that deals with many more cases of Kala-azar each year than the centres we visited in Patna last month. And though our research study is really about the private sector, we need to understand how the quacks and the private doctors fit in the patient's journey (which often also includes the PHC), so we wanted to have the perspective of the public health centre doctors as well.

A Block is an administrative region within a District, containing multiple villages (so it goes village->block->district->state->country). Manjha Block contains about 100 villages, with just shy of 200,000 inhabitants. 

Like all PHCs, Manjha's deals with Maternal and Child Healthcare (it is staffed with two Auxiliary Nurse-Midwives, or ANMs), but also has several doctors, a Block Health Manager, and its Medical Officer-In-Charge, Dr. Singh, with whom we spoke. 
The line outside the PHC

Manjha Block PHC

Main ward - empty today

 We were interested in finding out how many cases of Kala-azar they see in this Block, and we were told they had had 87 in 2012, but only 20 so far this year. They attributed the decline to an effective campaign of Indoor Residual Spraying (IRS). Dr. Singh said that every house in every village had been sprayed last year (though we found some evidence to the contrary later). As I've mentioned before, IRS is comprised of teams of two sprayers with (usually) hand-pumps, spraying DDT on all the surfaces within each home, up to 6 feet off the ground. As there are probably 40,000-50,000 homes in this block alone, you can imagine that it's a costly and time-consuming event, especially considering they do it twice each year! But this is the most effective way to reduce the sandfly population, which helps reduce the incidence of Kala-azar significantly.

Unfortunately, we discovered, spraying in Manjha has not yet happened in 2013, as the spray workers were on strike, hoping to become permanent government employees instead of temporary contractors. Hopefully this won't mean a big uptick in KA cases next year.

miltefosine capsule packs
Dr. Singh explained that for PHCs, the government provides one of the newer KA medicines, miltefosine, to give to KA patients for free. Miltefosine is supposed to be given for 28 days, and he believed that most patients stuck to the regimen and completed the full course. Miltefosine takes some of the strain off of the crowded PHCs, as it is an oral drug; this allows KA patients to be outpatients instead of taking up valuable bed space in this small facility.

He also mentioned that miltefosine was used to treat PKDL patients - as previously described, PKDL (Post-Kala-azar Dermal Leishmaniasis) is an otherwise harmless infection of the skin by the Leishmania parasites after an apparent cure of KA...but those with PKDL serve as a reservoir for the protozoans, and keep the disease cycle going. Thus, curing these patients where they're found helps control the disease. It was good to hear that these patients were being identified and referred to the PHC - in this case, by the CARE Link Workers and the ASHAs.

 ASHAs - Accredited Social Health Activists - are the front-line health care workers in rural India. They are all literate local women who report through the block's ANMs. As the government creates one ASHA position per 1000 population, there are about 200 ASHAs in Manjha Block. Taking our leave of Dr. Singh and the PHC, we went to meet a group of ASHAs who were getting together for a training discussion at a nearby high school.
The ASHAs were kind enough to give us over an
 hour of their time 
While the ASHAs' primary function is to attend to the needs of mothers and young children in the villages, they receive training to help manage most public health issues, including infectious diseases like TB, malaria, and Kala-azar.

For KA, they are trained to identify the early signs of the onset of the disease (two weeks+ with fever that doesn't respond to medicine, tender abdomen with enlarged spleen) and get the patients quickly to the PHC for treatment.

Clara taking notes, with some curious onlookers
 Along with finding KA patients, the ASHAs also spend time in dispelling some of the myths about the disease, and teaching villagers about how it is transmitted. They are also critical on-the-ground help when the government holds a "Kala-azar camp," shepherding ill villagers to the camps to get tested for KA and treated if positive.

Atul and Ishani translated our questions for the ASHAs
 and asked some of their own
Another key role they play is preparing the village for IRS, helping the inhabitants to understand why the spraying must occur and explaining how to prepare their homes. This requires moving many of their belongings out of the house to enable full coverage of the spray, and making sure that food items are fully covered so that they are not contaminated with the DDT. As I mentioned in my post about the tola we visited in Patna district, sometimes villagers go along behind the spray workers and plaster over the DDT, completely negating its effect! The ASHAs teach the homeowners not to do this.

Villagers sometimes doubt that the spraying helps - after all, it's hard to see the sandflies to begin with, as they are quite small and hide during the day. ASHAs do their best to assure people that it does indeed make a huge difference.

They told us that people's trust in them has been growing, and they are viewed as important members of the community now.

Importantly, the ASHAs told us that it was inevitable that villagers would visit Rural private providers (quacks), as many had the attitude that "anything free can't be good." But they were working to try to ensure people took their health seriously and to try to get people to trust the government facilities.
We attracted the usual crowd!

Photo op with the ASHAs

Thanking the ASHAs for their time, we next went to a tola to see some of the people they help.

Atul told us that this tola, Dhai, was home to a lot of current and past Kala-azar patients - and he sure was right. The villagers told us that almost every home in the tola had at least one KA patient, over 60 in all. This tola was not subject to the same abject poverty as the community of Musahars we had visited on our last field trip, but still lived with a mix of concrete, brick, and straw-and-mud homes, with livestock living in and around their homes - so still a great environment for sandflies.

We first spoke with one patient, Raju, who was currently receiving injections of the old (and now at times ineffective) cure for KA, Sodium Stibogluconate (SSG). SSG is an antimony-based drug, which can be a bit tough for patients to tolerate. But we were especially interested in why Raju was getting these injections instead of taking the pills - especially since the SSG was expensive (about $50 - a huge sum here) while the miltefosine is free!

Raju (left of center) telling us about his
 Kala-azar treatment experience
Raju explained that he had indeed gone to the PHC (after a few days of ineffective treatment by a quack) and received his miltefosine - but he had started vomiting from the capsules within two days, and stopped taking it. He then went to a private doctor and received the prescription for SSG, which was being administered every other day by a local compounder (medicine mixer). 

One of Raju's SSG vial boxes
This was the first we had heard of serious side effects leading to discontinuation of miltefosine. But Raju wasn't the only one in Dhai Tola who had experienced it - quite a few of the villagers had gone the same route. We saw the records and prescriptions for each of the villagers, and noticed that they all had visited the same Private doctor, located about 6 or 7 km from the village. Raju related that this doctor had said that miltefosine was not effective (which is completely counter to all the evidence we'd seen - though this may be a bit of a miscommunication on the villagers' part - he might have been referring to tolerability, not efficacy, issues), and that they should take SSG instead.

We then started looking at the other villagers, and noticed that at least a couple of them were showing signs of PKDL - which often shows up as bumps or spots on the face or arms. One adorable little girl, named Soni, clearly had PKDL, with typical bumps covering her face. PKDL isn't painful or distressing in any way other than aesthetically, so those afflicted often don't bother seeking medical help for it - the exception usually being young women worried about their marriage prospects. A full course of treatment usually clears up the spots - but of course more importantly eliminates a reservoir for the parasites.
  Soni had had Kala-Azar a couple of years ago, and like Raju was prescribed miltefosine at the PHC...but vomited from the medicine. She had been taken back to the PHC to get anti-nausea medicine, but her mother told us that it didn't work, so she ended up getting SSG as well.

This past week at a government conference, we had heard some evidence that those treated with SSG were more likely to develop PKDL after their apparent cure, and that seems to be bearing true here in Dhai. Several others seemed to have PKDL, including Soni's mother.We explained that the PHC could help them get treated.

Now, if you'll remember, the Manjha PHC doctor had told us that all the villages in the area had been thoroughly sprayed. It turns out that this tola hadn't seen any spray crews for five years! This helps explain the high prevalence of KA in this community. And with so many paying for SSG and visits to the private doctor, it is taking a bit of an economic toll as well. One patient told us that he had to rent out a piece of land to pay for treatment.

Striking a pose for the camera

The kids got a huge kick out of watching Ishani take pictures of them

Livestock roamed - or was led - around the tola
We walked up to one patient's house
just after this goat gave birth to her kid
This teenaged girl was just finishing up her miltefosine. The goat
 at left was hers - and notice the cow walking into her home
We walked through the tola and met a few other patients, including one woman who was still feeling quite ill, and a young lady, 15 or 16, who was just finishing up her miltefosine treatment. She had been started on a heavy dose, but after vomiting apparently had gone back to the PHC and received a lower dose, which she managed tolerate.

A shot down the main road - you can see a rice field on the right
 Intrigued by the situation in this tola, we decided to visit the private doctor that the tola residents had been seeing. The doctor there mentioned that he was usually seeing 10-15 patients per month. He believed that there was a lot of cases similar to Raju's and the others we'd spoken with in the tola - where they were not able to tolerate miltefosine and had to be switched to SSG. He was aware of amphotericin B, which is available in some of the District- and State-level hospitals, but it was not available locally.
 He was aware of some of the local quacks, who likely referred patients directly to him. And he mentioned that he sometimes referred difficult KA cases to the Patna Medical College Hospital that we visited on our last field visit.

Private doctor
He also said that he wasn't currently reporting KA patients to the local PHC - something that CARE hopes to enable to do through a comprehensive information system that they are currently piloting. It is important to track patients to ensure the government and the development community can identify KA hotspots, provide help where it is most needed, and measure progress against the goal of eliminating the disease.

 He said that he did indeed use local boots-on-the-ground (like the compounder Raju had mentioned) to administer the SSG injections if the patient could not easily get to his office. Another set of private providers that we hadn't considered!

Overall, this was a very informative day. After one last stop at the local (Gopalganj District) CARE Office, we retired exhausted to our hotel

Next: Quacks, Ineffective homeopathy, and More conflicting stories....

Tuesday, July 2, 2013

Visit to Patna Medical College Hospital

For the last of our Field Visits, Ishani from the Patna CARE Hub took us to Patna Medical College Hospital (PMCH). This public facility is considered one of the higher-level hospitals in the area, and it was mentioned by the Rural Medical Providers (quacks) as the place to which they would refer kala azar patients.

The initial impression was that it was a huge and sprawling campus, as you might expect in a city of 4.5 million people.

However, it was good that we had been prepped not to expect the kind of facilities that Clara and I were used to seeing in the US or UK.

Aside from a couple of security guards at the main door (who didn't require anything of us), there was nothing to stop us from going anywhere in the campus -  and no information desks or staff to ask for guidance on most floors.

It took a bit of searching for Ishani to find the Kala Azar Ward. It was in the Infectious Diseases Department of the hospital, across the hall from a tuberculosis ward. The ward was bare-walled, with peeling paint, no air conditioning (though it did have a functioning ceiling fan and windows – no screens).
PMCH sign for the TB (top line) and Kala Azar (second line) wards
 There was one kala azar patient in the ward, alone in a room of six beds. No staff were present, so we asked the man standing by the patient’s bed if we could ask him a few questions. He happily obliged.

As Ishani translated, we learned that the man was the patient’s father-in-law; though he lived about an hour (by bus) away from the patient, he felt obliged to take him all the way to Patna from his home in Arrah, which is about 60km away, as he wanted to ensure his daughter’s husband would survive the illness.
Kala azar patient Ram, resting in the ward
Looking into the KA ward
Speaking with Ram's father-in-law (left)... and curious
 visitors from the TB ward across the hall

The patient was a young man named Ram, who looked like he was in his late teens – and though his father-in-law said he was 25, his chart said 18.

These men were Musahars (the subcaste mentioned in my previous blog post), and were very poor. The cost to travel to Patna along with the expensive cost of the treatment - about 3000 rupees, over $50 - plus another 1000 rupees for various other expenses were a small fortune for them, and it had been difficult to raise the funds. The father in law had to go to the chemist himself to purchase the medication, and was also asked to purchase blood for a transfusion. Ram was in bed for the past few days, and had several more weeks of treatment to go.

We asked about Ram’s home; he lives in a mixed mud-and-brick home, probably similar to some of the ones we saw in the tola we visited the previous day. While he didn’t have cattle living in or near their shelter, he did have pigs (some of which he had to sell to fund this) – which would of course contribute to a better environment for sand flies to breed. He works in the fields of a rice plantation.

Ram had been sick about ten days with fever and a sore stomach when he first sought help from a quack. He was given treatment for jaundice and fever for two months, during which his skin turned black (as often happens with kala azar patients) before being referred to a private doctor and had gone through several more months of various treatments (no doubt at great expense) before being sent to PMCH, where he was admitted to the emergency room and was finally diagnosed, seven months after falling ill.

Neither Ram nor his father-in-law had ever heard of kala azar before this, and they didn’t know anyone else who was ill.

Ram was being treated with Fungizone, which is amphotericin B – not the Liposomal variety which is much less toxic - so he was being evaluated daily with blood and urine tests (and, we assumed, cardiac monitoring, though there was no equipment in the ward besides his IV infusion drip). He would be getting the medicine once every two days for the next month.

He was already feeling better, just a slightly tender abdomen, and his skin had returned to its normal color.
The doctors had not discussed much, if anything, with Ram or his father-in-law; they still had not been told his prognosis (which actually should be positive – now that he is on treatment, he should fully recover), details of the disease, or how to prevent it in the future.

Overall, we were left with a vivid portrait of a family who really had limited control over their own health needs, barely afloat in a complicated health care system.

After speaking with Ram and his father-in-law, we waited in the hall for a nurse to arrive, as heavy monsoon rains started outside along with some startling thunder. I noted that water was simply splashing in the sections of the hall open to the outdoors, as well as through open or paneless windows. Most of the lights were off, both in the hall and the wards, though a couple came on when it got particularly dark from the gathering clouds.

Heavy rains surprised us
Water flooded the hallway as we
waited for the nurse to arrive
As we were about to give up on our wait, we met the young Ward nurse coming up the stairs. Ishani asked if she would mind speaking with us and she answered something to the effect of “I have nothing better to do!” She made a very quick check in the KA and TB wards (everyone was comfortable), and led us to a small records room, where we sat to talk.

Talking with the Ward Nurse
She explained that her role was simply to check up on the patients, assist them in getting some exercise now and then, and take basic physical stats. The current KA patient was the second in the past month, and she showed us a handwritten record book that listed all the Infectious Disease wards’ patients for this year – apparently the only record-keeping system they had.
Looking through the
patient record books
We asked her to walk us through all the patients this year, and found that they had already had eight in 2013. I had expected that there may have been several patients from the same area, but almost all of them were from different Districts within Bihar. We then looked back over the previous two years and found they had just nine cases in 2011, and 12 in 2012. A few district names came up more than once, but there didn't seem to be much of a pattern, other than seasonality – the periods just before (April-May) and just after (September-October) the Monsoon season were the heaviest for KA cases. This was consistent with what I've found in the literature review I've been doing the past few weeks.

As many of the cases seemed to have been sent to the Ward from the ER, we decided to go there next, after thanking the kind nurse for her assistance.

The ER was quite an experience – many, many people crowded in the cavernous, dimly-lit waiting area, most of whom were standing or sitting on the floor. Queues to get forms and to get admitted into different areas of the ER were quite long. 

Outside the emergency room
We wound our way through the halls, asking directions from several people, before finding the right room, where a ER physician, Dr. Kumar, who would refer infectious disease patients to the Ward, was reviewing forms and directing patients on where to go next.

He handed his duties off to another staff member outside the room, and invited us to sit and talk.

When we started asking about Kala Azar, Dr. Kumar mentioned that he had studied under a quite famous authority on KA, one Dr. C.P. Thakur (I had read some of his work on the subject). He said KA was not a very common occurrence here recently.

A peek inside the ER

Here at the PMCH, they tended to diagnose the disease by the guidelines – looking for long-term, unresponsive fever and enlarged spleen, followed by the rapid diagnostic blood test (rK39) and then a splenic puncture to confirm the presence of the Leishmania protozoans. Importantly, they first would rule out the more common malaria and typhoid, as patients with these diseases often present with similar symptoms.

The treatment they usually used was amphotericin B, which the patient, Ram, was receiving. This was in contrast to the rural Health Center we went to the previous day, which used the newer treatment, miltefosine (which was being provided for free by the government there). Apparently the government programs are focused on the rural centers and not the larger district- or state-level hospitals; I will try to confirm this on my next visit to Patna.

Dr. Kumar said that kala azar used to be much more prevalent; in the epidemic of the early 1990’s, they would have as many as 400-500 KA patients in the hospital at a time (I wondered to myself where they would put all these patients, as the KA ward had only six beds – appropriate for today’s lower occurrence rate, of course).

I was very glad to hear of the declining rate of infection, but it seems this also presents some problems – KA is now rare enough that many have not heard of it (like Ram and his family), and many more do not know how to identify a potential patient (like the quack and the other doctors Ram had seen before arriving at PMCH, where trained physicians like Dr. Kumar know what to look for).