Health for a 50 year old refugee camp

To start with this week, and as if to prove the point regarding sustainability of funding for vertical programmes, see this article on cash crisis for Global Fund. Financing ongoing interventions, let alone new ones, is going to be a huge challenge over the coming few years.

I had the opportunity to visit a refugee camp in the south-west of Uganda this week. It was a strange and fascinating experience, which i largely viewed from a medical standpoint. The camp has a long, long history, originally opened in 1957 and since then playing host to various waves of refugees from Burundi, Rwanda, DRC and, most recently, Somalia. It was a new and strange concept to me, that a refugee camp should be over 50 years old. But as repatriate rates fall age becoming a commoner feature - leaving a population in limbo, unable to fully integrate into their host country and unable/not wanted back in their original country.

Health within these camps is provided, at the moment and until January 1st (when one NGO takes full control), by several NGO's who take most of their funding from the United Nations High Commission for Refugees.  The fascinating irony of this was that these refugee's received far better primary healthcare than their surrounding nationals. It was all free at the point of delivery, which although was in keeping with national guidance, rarely happened at national centres as drug and testing stores were normally empty within a week of their arrival, leaving patients to buy their own. Clinical officers, who competed for higher than average salaries (contributing to the internal brain drain), could choose from a variety to rapid, point of care tests to help with their diagnosis and select from a variety of drugs. One striking example from that day was that IV Ceftriaxone - the choice antibiotic for meningitis and severe pneumonia - was available in these health centres but not in the nearby University Teaching Hospital. I guess at this point it's important to note that this service did not exclude Ugandan nationals. In fact approximately 40% of their patients were local people, travelling into the "camp" for healthcare

What is the consequence of this? On face value it means that it is possible to provide high quality care to potentially vulnerable populations; an equitable and commendable aim. But, there is also the risk in creating a dual health system with questionable sustainability. What happens when this NGO decides that another refugee camp needs it services more? Do they pull out, leaving their drugs and equipment, and leaving the health workers to move back to their original homes to find a national salary? Most likely, following the short burst of healthcare provided by the NGO, the population is plunged back into the situation it started, and back to the drawing board of building its health system. Its a situation i have seen happen before and i am sure happens across the world.

I have to say though, in this situation and watching these health centres so successfully provide for the basic health needs of the "camp" with an all Ugandan team, employed by a foreign NGO, is a satisfying experience and perhaps there is a lot to be learned from them that can be applied generically. Maybe the answer therefore is in the handover, making sure that the good work that these NGO's do is not lost, and its not a case of back to the drawing board.

Ethical Research? “Prove it works, then work out how to do it”

The fun’s over for the moment, so its back to a more medical theme for this blog. I’m going to start with a story of a 13 year-old girl I met on the ward today. She came in with the worst headache she had ever had. She lay on the bed as her mother held her head and she cried. She had recently completed treatment for TB and her and her mother both said her HIV status was negative, however a test today found that she was positive. Given all of these pieces of her history the Ugandan team admitting her astutely felt the most likely cause was Cryptococcal meningitis.

She was clearly very unwell: Cryptococcal meningitis in high resource settings has a mortality of approximately 25%. In the best study settings in low resource countries this is around 40%. A team from the Infectious Disease Institute (IDI) running an ongoing trial into Crytpococcal meningitis management came to see her and agreed with the diagnosis. Unfortunately, being under the age of 18, she did not fit their study criteria and therefore could not receive the “best available treatment”; a CT head, serial lumbar punctures (LPs) from pre-prepared packs, a full follow-up from the study team using a treatment protocol, all at no cost to her.

Instead, and despite being in the best equipped national hospital in the country, she would be looked after by an overstretched team of Ugandan Doctors and Nurses without easy availability of equipment (even one LP would cost her and her family, then the equipment was not easy to find), medications (Amphoterecin B was available at a cost, Fluconazole is free) and no available CT as it was broken (although if it were available it would be at a cost). The contrast is care is obvious and goes along way to explaining the sadness of her situation. It’s also probably why the IDI team offered an LP pack to her family. She duly received her LP, and her cerebrospinal fluid hit the wall as the needle went in. Within a few minutes her headache was better. Her prognosis from now is likely guarded. She will need a full course of antifungal treatment, serial LP’s and careful follow up to start antiretrovirals (ART), but for the moment she was much more comfortable.

To me this case highlights the deep chasm that separates clinical trials from standard practice in developing countries. I think this raises some ethical issues to do with equity of care for patients, and for the implementation of research after the trials have been performed. Perhaps at its most extreme on could argue that the last few years have given rise to a heavily funded research fetish that is open mainly to the western researcher and deals with ideas that are far beyond the scope of system and resource availability they are set in. On the other hand, perhaps trials like these are the only way to create high quality evidence to guide national and international policy.

Ethical Guidance

In 1964, TheDeclaration of Helsinki was created to guide medical research worldwide. Today it is the cornerstone of medical ethics worldwide but sadly lacks any legal capacity. From this document, point 17 of 34 states:

“Medical research involving a disadvantaged or vulnerable population or community is only justified if the research is responsive to the health needs and priorities of this population or community and if there is a reasonable likelihood that this population or community stands to benefit from the results of the research.”

The interpretation of this can of course be debated. What is the timeframe of the “benefit”? Does the statement create a relationship between the investigators and the person, or community, in the trial that means they should continue to receive treatment after the trial? To me it underpins the fact that if you are doing research somewhere the primary benefactors of that research should be the population or community that is being used. For example, on the basis of a trial performed in Kenya HIV positive individuals it shouldn’t be the case that American or British HIV positive individuals receive those benefits years before their Kenyan counterparts.

The Research Buzz

In the HIV/AIDS arena several trials have created a “buzz” amongst researchers and to some extent their clinicians; people think that for the first time controlling the HIV virus is a real possibility. Male circumcision reduces the risk of contracting the virus for men by 54%. Tenofovir gel reduces the risk of infection for women and gay men by 39%.  Pre-exposure prophylaxis reduces the risk of infection by between 62-73% in concordant couples, with relatively few side effects. There is also emerging evidence for vaccine efficacy; a recombinant vaccine in Thailand recently showed a 31% reduction in new HIV infections, although the length of protection is still unclear. Finally, and perhaps most interesting at the moment, is the idea of treatment as a method of prevention; HIV discordant couples (on HIV positive the other not) showed a 96% decrease in infection rates, with the same virus, when the positive partner was started on ARTs.

(Interestingly, researchers in the treatment as prevention study got around the problem of what to do with these HIV discordant couples who they had started on ARTs early, at CD4’s of 550, that they felt they couldn’t ethically discontinue ART in by continuing to treat them in a “demonstration project’.)

Given all this evidence it can be argued that the future is bright. But what about the current reality? The two most important factors in this are resources and the epidemic.

Resources

In Sub-Saharan Africa, most of the funding for ARTs and the systems that provide them comes from the Bill and Melinda Gates Foundation and PEPFAR, the Presidents Emergency Plan for AIDS Relief. Between 2003-8 PEPFAR committed $15 billion, which was expanded to $48 billion to 2013. In Tanzanian terms this amounted to a budget of around $350 million (similar in Uganda), in other words approximately a third of the national health budget. The Gates fund is more difficult to estimate however as far as I can see it is probably worth in the region of $30 billion to be spent over the coming 60 years. For both PEPFAR and Gates funding, especially given the current state of the financial market, the sustainability of funding is definitely not clear. Local resource input is clearly important, however as I have argued previously a country like Tanzania has very little available to spend on health relative to the costs needed.

Epidemic

As I am currently based in Uganda I will use it as an example to show the current deficits in basic provision of ART:

Number of people on ARTs	200,000
Estimated number of people needing ARTs (WHO definition CD4 350)	520,000
Approx number of people to treat for prevention (CD4 550)	? 750,000*

 (*estimate via personal communication)

Add into this the dynamism of the epidemic; more and more people are infected and diagnosed on a daily basis. In Uganda the HIV positive, untreated population is still growing as more people are diagnosed with HIV daily than start on ARTs. Despite the boom in funding we still cannot keep up with demand for HIV treatment at the most basic level of ART provision.

“Prove it works then work out how to do it”

The obvious argument for doing these trials is that we badly need evidence to show what does and doesn’t work in HIV, for individual patients and policy. And, although most countries that face the brunt of the HIV/AIDS epidemic have weak health systems that are not capable of implementing many of the interventions, if researchers can show that these interventions work, then the funding will come as the allure of slowing and possibly stopping the epidemic becomes too tempting. People say “look at what happened with ARTs; 10 years ago people said that you couldn’t put people ART and now look what’s happened” – PEPFAR has reduced AIDS deaths by an estimated 10% by starting them on ART. Maybe this is true but at the least it’s a gamble.

Personally, I can’t help but feel sad and angry about the care that this 13 year-old girl will receive. I’m sad and angry because I know down the corridor from her is someone who, by virtue of being 5 years older, is being looked after by a foreign research doctor (getting paid a western salary) to provide international quality care for their trial patient. Care that can, in the words of one researcher, "we only do in a research setting". Underpinning this is the fact that her health system can’t provide (for a myriad of reasons) a similar standard of care and, unless we see a paradigm shift in how HIV care and health systems are going to be funded and interventions rolled out, is most likely not going to provide that standard of care in the near future. This funding could be donor driven but in the current climate this is unlikely, which leaves resource limited countries the option of reprioritizing their own scant resources, the alternative is that they perform an economic miracle of growing their economies in an equitable way at a vastly increased speed. For research there is a growing move towards “operational research” focusing on how to scale up interventions by cost-effective means. Perhaps this will prove to a more equitable and just method for improving access to care, we will have to wait and see.

P.s. To add to the western focused research fetish; why do trials publish in NJEM when there is f*^k all chance that a clinical officer or medical student, who is arguably the most important reader of these trials, is able to access them?

Moshi - Nairobi Cycle Experiment

The last week has been a bit of an experiment. The four-day cycle from Moshi to Nairobi was meant to test out a few things; what is wild camping like, how hot is it in the middle of the day, where can one get food and water? Luckily, after four days cycling, the bottom line is that its all good.

I was lucky enough to have company for the first two days in the form of a KCMC mosquito expert, Rick (who shares the name of Rick - my future long distance cycle companion). We set off from Moshi at 5:30am as the first rays of light streaked across the still starry morning sky and Kilimanjaro lit up to our right. Our aim was to cycle around the mountain. When we reached the other side Rick would complete the loop while I headed north into Kenya, roughly following the Mombasa road into Nairobi. It’s a fairly well traveled route into Kenya, especially since the road on the Kenyan side of the border has been tarmaced. 

We hung on to the early morning mist and coolness as we rose toward Sanya Juu and made lunch at Engare Nairobi just in time before torrential downpour turned the main street into a temporary river. We sat this out in the company of a local water engineer enjoying lunch over a Kilimanjaro beer, or two. He explained how the local Hai district had recently become one of the first to have a reliable, chlorinated water system, however this district (Meru) was yet to be declared safe. As a result he played safe and only drank beer while he stayed in the area. As with many Tanzanian government employees he often works a long way from home, for him however faithfulness during these stints wasn’t a problem as he was “not a reptile”. We congratulated him on his warm-hearted approach but were quickly corrected us. “No, no, I am not erectile”.

After a couple of hours the rain abated and we said farewell to our Chipsi Mayai lady and Engare Nairobi. The afternoon got tougher as we climbed through the rainforest and the 3900m Shira Plateau slowly came into focus above us. Colobus monkeys and local farmers cheered us on until, nearing exhaustion, we slowed and started looking for a camping spot. We asked a local farmer if we were anywhere near any local town. Happily he informed us that we weren’t too far from the park gate! Realising our wrong turn was some way back down the hill we sheepishly descended to the much more friendly alternative route. As a consolation however we did very soon find a campsite with a magical view overlooking the sunset beside Mt Meru. 

 

In the space of two days we rode through a huge variety of landscapes, from starting on the coffee plantations between Moshi and Arusha, the huge foreign owned arable farms on the Western slopes, the interspersed Tropical rainforest, the Masai and Chagga villages, the more arid acacia bushland and finally to the commercial pine and eucalyptus forests on the Northern side. Throughout these the mountain sweeps down to the hotter plains of the Arusha National Park and Amboseli Reserve.

Our second day was punctuated with several muddy sections that tended to slow us down. At one point we were in danger of struggling to make the border area to camp, however we were quickly reprieved by a perfect tarmac road and huge pine forests that helpfully retained the some mist and shade. Cycling along the tarmac amidst the forest felt at points as though we were somewhere on the West Coast of the US. The highlight of the second day was undoubtedly a superb camping spot, overlooking the treetops of a lush ravine and a stunning sunrise view of Kilimanjaro. 

Rick and I parted company at the border post of Tarakea the next morning. At the border I was welcomed into Kenya with shocking efficiency; perhaps this administrative competence was a sign of things to come in Kenya? Despite this timeliness I had a way to go to get across the Amboseli plain that day. The map showed a completely straight road and only one town, Mkutano, about half way across. It was during this morning that I came to appreciate probably the most important thing from the cycle - it get seriously hot very early in the day – and by half 9 I was sweating my way up the hill to Oloitoktok. The good news was that the general direction was down the mountain and so, with the help of several litres of water, I made it by half 12.

Mkutano was a series of tin shacks one of which I dived into for lunch – a hearty bean and sweetcorn stew. The lady who served me was smiling Masai lady, very much contrasting with the Gasta-Rap posters that adorned her shack. Seemingly, the two main publicity exports from the west/global north/whatever you choose to call it are football and rap. Two days previously, while watching the downpour from the Chipsi spot in Engarutu Nairobi I saw three umbrellas go past: Manchester United followed by Chelsea and Barcelona. In my experience it’s rare to find a town in East or West Africa in which you can’t find the premier league. It’s an evangalism that seems too easily propagate itself. The worshiping faithful can be found on a Saturday afternoon in the “Stahere Screen” house, adorned with a satellite dish, reveling in the stories of their dubious Messiah, Wayne Rooney. One local police officer I met confessed his pilgrimage dream. “My dream is to watch Manchester United play at Old Trafford”. (He was at that point sadly mourning their 6-1 loss at home to Manchester City).

After three hours in a corrugated lunch shack I was well refreshed and, as I followed a heavy shower in front of me, things had cooled considerably meaning I could make Emali with half an hour before nightfall. Emali is very much a stop-over town on the Mombasa – Nairobi – Kampala road. Despite its hustle and bustle it never quite feels like someone’s home. It fitted well the description of one of the towns through which the AIDS epidemic would have initially spread – along the arteries of the major roads spread by truck drivers and other temporary visitors. 

I picked one of the better looking motels for the night, only sharing my room with a few dozen hungry mosquitoes. Throughout the four days there had been mutterings of “Al Shabab” by local, following the recent incursions into Somalia by Kenyan forces, and the grenade attacks and ongoing threats to Kenya by Al Shabab. I found that in Kenya things were more open than Tanzania, some people would see me arriving on my ladened bike and say “Look, its Al Shabab!”. This motel bar was no different and as I ordered some food and a beer, the lights went out with comedy timing. One a group of drunk men pointed at me and shouted – “Eh, its Al Shabab”. One of his nearby friends clearly found this laughable and he corrected him “No, this man is a donor, he is helping us fight Al Shabab”. Donor or not I was a very tired cyclist and I was asleep and in bed by 7:30. For the first time in my cycle the terrain and road for the next day was going be a complete surprise to me. I had in mind however that if I made good time, I might get to Nairobi the next day.

Giving myself the best possible chance, and any failing to find any sentimentality for Emali, I left town at 5:15, catching the first rays of sunlight after a Dave Biles inspired Muesli breakfast. The morning, and day turned out to be some of the best cycling I had. The mist clung to the shambas and the surrounding hills cast morning shadows across the road as it slowly wounds its way up to towards Nairobi. In my naivety I hadn’t quite appreciated that Nairobi sits at about 1600-1700m, while my starting point that day was not more than 1000m. For much of the early morning I shared the road with school children who, in comparison to their later-in-the-day alter egos generally watched me cycle past in inquisitive silence. Up to this point I was much more accustomed to running shouts of: “Give me money/sweet/chocolate”. The question of why and how this behavior is one that I have struggled with, but isn’t for discussion today. Through the morning I enjoyed a couple of 20 and 30 minute climbs happy that I was bi-winning gaining altitude and coolness, without the likes of Pete Randolph, Timmy the Tiger, Phil Williams (and Matt Bell?) pushing the pace. I made my lunch stop of Machakos just as the heat was becoming less bearable and I became more concerned about an imminent lack of water (in the previous town I had only managed to get 2 cartons of long life milk to add to my fluids, a step up from a cucumber i once shared with Rob Hughes). I was keen to press on, as it was looking likely I would make Nairobi that day, so after a quick lunch I cut back to the Nairobi-Mombasa road and my attack strategy into the city. As soon as I got to the road it was fairly obvious that 5 minutes would have finished my and I bike off; lorries and buses thundered past at 100 kph in long snaking trains. I took the tactical decision to thumb a lift and within a couple of minutes I was hopping into the pick-up of a friendly plumber, happy for the company (it seems plumbers banter is an international skill) and for my skin intact.

This little hop was my first cycle in East Africa, building on several trips in Europe and one in West Africa. It’s been a mini-experiment for the longer Kampala – Maputo/Jo’burg trip in the New Year. As always I am happy that its been the best way to get from A, for anyone who hasn't experienced that feeling, give cycling somewhere a go. I’ve seen some stunning sights,  expected and unexpected, and met some excellent people. For my longer though there have also been a few of important lessons. Firstly, that things are unpredictable, if it had rained heavier the sections on a dirt road could have taken twice as long. As a rule the combination of bike, panniers, road and heat mean its much more difficult to cover ground than in Europe (perhaps not surprising). On the subject of heat, it’s a lot hotter than I expected; even by 09:30 the heat can get unbearable without litres of water to cool you and to drink. Despite these challenges and once you avoid some of the very main roads around the biggest cities, that it’s definitely the way to travel. Finally, it goes without saying that my backside was eternally grateful to Matthew Burman, Rebecca Shepphard and Charlie Reid for their kind attention in the shape of a Brooks saddle.

As always if anyone has any comments or thinks there are things that should change about this blog please put your thoughts down here/facebook/email. Also, if anyone has any thoughts on what shouldn’t be missed on a trip through East Africa (or places to stay), thoughts definitely also welcomed.