Supply and demand

There was a great debate on Ebola this week hosted by the Thompson Reuters Foundation (http://www.trust.org/spotlight/ebola-when-will-it-end/) which brought together experts who are part of the response across West Africa.  One of the major areas of discussion was, despite funds that are being made available, why are resources lacking to enable an effective response to the Ebola outbreak?  The main things that were named as missing were cars, personal protective equipment (PPE) and skilled workers – in particular, doctors, nurses and infection control personnel.

The lack of cars on the ground did not come as a surprise.  When I was in Monrovia I was astounded to find that even a small, second-hand vehicle that would never pass an MOT in the UK costs around £2500-5000 (that is $4000-8000).  I genuinely looked into whether it would be cheaper to have my £500 faithful old banger shipped to Liberia than to buy or rent a vehicle in order to conduct my fieldwork there.  Even the Red Cross, reliant on having heavy-duty vehicles to reach its offices all over the country struggles with insufficient transportation.  Now that the Ebola outbreak has spread so widely in the country, the need to get people around, particularly in the rainy season, is an enormous challenge.

I find it hard to understand and accept the lack of sufficient personal protective equipment (PPE).  After all, what is it but boots, gloves, boiler suits, masks and aprons?  These all seem to be things that should be common place.  I can only assume that the economic principle of supply and demand applies – there is not usually the level of demand for these items (which need to comply with specific standards to be used for Ebola), so manufacturers are not prepared for a sudden increase in orders.  Or procurers do not know where to source the quantities that are now needed.  Still, this surely is an issue that international organisations should be able to resolve – and they had better do it quickly, as it is closely connected to the question of personnel.

In relation to the staffing needs, Jorge Castilla of the European Commission for Humanitarian Aid (ECHO), based in Guinea, lamented during the debate,

“The gap between needs and offer is big.”

One contributor suggested that potential volunteers from the US might be put off as insurance companies refuse to provide medical protection for Ebola.  I can well believe that – I was recently refused mortgage protection insurance myself because I said I was planning to travel to Liberia.  Perhaps there are also issues of the speed of recruitment processes and capacity to advertise for positions, or the specific profile of volunteer that is needed, particularly those with experience in managing infectious diseases.  But I wonder if the most overriding factor is fear.  Ebola is a terrible disease, and both local experts and international health workers have been infected.  And as we know, there is no ZMAPP left for next time just yet … we also know in theory that Ebola can be controlled when proper procedures are followed, but this is hard to reconcile with the knowledge that people you would not expect to take any risks or deviate from procedures have nevertheless contracted the disease.  I wrestle with this, being married after all to an intensive care doctor.  His work commitments would not enable him to go at present, so it’s a futile dilemma in any case.  But if they did, and if he wanted to, would I entertain the risk of him going?

The potential for impact if foreign medical staff make themselves available is hard to overstate.  The right infection control procedures can enable staff to do their jobs safely.  And in addition to the direct clinical benefits of having the personnel that are needed on the ground, as Jorge Castilla observed,

“Foreign medical staff can create confidence in national staff and show that it is possible to deliver services with no risk because there are adequate measures in place.”

Why I love the Red Cross

I am very proud to be associated with the Red Cross and Red Crescent Movement in my research, as well as in this campaign.  Not only because they have proved to be excellent partners in my work so far in Liberia - there are a lot of features of the organisation itself that I am impressed with.  Another day I will focus on how they are involved in fighting Ebola more specifically – today let me tell you a bit about what I think the organisation has going for it.

1.       The Liberian National Red Cross Society is a Liberian charity.  It was first set up in the aftermath of World War I as a voluntary relief committee.  It serves the Liberian people.  Its staff are Liberian and its National Executive Board members are Liberian.  It is recognised by an act of Liberian law.  The same goes for the British Red Cross, the Sierra Leone Red Cross Society, and every other Red Cross or Red Crescent Society.  They belong to the people who they serve.

2.       It is part of the International Federation of Red Cross and Red Crescent Societies (IFRC).  Each national Red Cross or Red Crescent society does not stand alone, they are members of the IFRC and so are all connected.  This means that knowledge, experience, personnel and funds can move between national Societies, making sure that resources can be applied where they are most needed.  The movement as a whole is more than the sum of its parts.

3.       It unifies people.  The mission statement of the Liberian Red Cross states that it exists “to respond to the needs of the vulnerable people at all times, and to treat them with dignity and without discrimination.”  Sadly, historically, communities in Liberia have been anything but equal, from the disparities between Americo-Liberian settlers and indigenous peoples in the first century or more of the country’s recognition in the Western world, to the different cultural identities that were manipulated and polarised by the instigators of the civil wars.  In its response to human hardship and vulnerability, the Red Cross sets an example of overriding distinctions between people for humanitarian good.

4.       It works in support of the Government.  Many Non-Governmental Organisations (NGOs) across the world do excellent work supplementing Governmental work and filling the breach where Governments lack capacity – this is particularly crucial in the aftermath of wars (civil or otherwise) or natural disasters.  This is life-saving work, and in many cases is done respectfully to and in partnership with the Governments of aid-receiving countries.  However, there can be a danger that as tasks are ‘outsourced’ from any given Government, the country’s political class becomes detached from decision-making in their own field in a way that can be disempowering as donors’ and other interests compete with their authority to govern.  The civil service can be denied the opportunity to develop in its capacity to run its own public services in the future as they are shipped in from outside, fostering a neo-colonial culture of aid-dependency.  The Liberian Red Cross is set up as an auxiliary to the Government of Liberia, and as such serves the Government’s agenda and augments its service-provision capacity.  No wonder it is one of the organisations at the heart of the Ministry of Health’s response to the Ebola crisis.

5.       Its life-blood is local volunteers.  As of 7^th August, the Liberian Red Cross had mobilised 650 volunteers across the country in support of the fight against Ebola – all Liberian.  That is a colossal resource, and in a context where trust is low, the value of public health messages being brought from within communities themselves by their own members cannot be underestimated.

That’s why I love the Red Cross and why I am working to raise support for it at this time of crisis.  If you would like to help with this, click on the image of the motorbike to the right of this page to link to my campaign’s giving webpage.  Thank you for your support!

Hands off

Last month I was visiting a potential field site for my PhD research in Monrovia, and meeting some of the people in the area.  One of the Liberian Red Cross staff was showing me around, and he explained to people that I am a researcher from the University of Southampton, and that I will be coming to do some research in their neighbourhood.  People seemed genuinely pleased, and reassured me, “You are welcome.”  I smiled and shook their hands warmly – we shared a limited amount of language, but at least we could share that basic courtesy, a sign of friendship and respect.  In the UK we shake hands as a formality in quite specific circumstances.  In Liberia, as in many parts of Africa, it is more than that – it acknowledges a person’s value, it says, “I see you.”  After a while, my colleague quietly cautioned me, “Not too much handshaking – Ebola.” 

Of course he was right – physical contact is the way that Ebola is spread.  I don’t know if someone I meet is caring for someone who is sick at home and if we’re all going around shaking each other’s hands by the end of the day, how many people might we have infected?  Sure, it’s unlikely, but it’s not impossible, and if everyone avoids physical contact with others it will have an impact on the spread of the disease overall.  It is sensible and right to avoid too much handshaking.  But what does that mean in a culture where people value physical touch?  When I meet a person I am anxious – if I do not go for a handshake, will they think, “This person is being careful for my health,” or will they think, “This person thinks they are better than me”?  Whatever I do, I risk seeming disrespectful.  In a small, everyday way, no handshaking breaks a simple way that people treat others with dignity.

How much more acute is the rejection when a person is suffering from Ebola-like symptoms, and they are denied physical touch?  Of course this precaution is absolutely essential.  But it is also tragic.  We all know how much we need the reassurance of a kind touch when we are feeling unwell.  Something that says, I see your suffering and I am sorry for it.  Something that says, I care for you.  Something that says, you are not alone – I am here with you.  Instead, suspected Ebola-sufferers must be isolated, and are met with physical barriers that protect their love ones and other carers, but which drive home the message, you are on your own.

I wonder, if I was that sick, whether I would have the strength and grace to see those barriers to touch not as a denial of the love and care that I would crave, but as a way of me asserting my own care and respect for those around me.  Is it possible, in day-to-day life, for people to reverse every instinct and see refraining from touch as an acknowledgement of another person’s dignity, to read the message in hands withheld, “I see you”?

If you would like to support the Red Cross' work fighting the spread of Ebola in West Africa, click on the image of a motorbike on the right-hand side of this page to go to my giving page.

Where has all the ZMapp gone?

After two American aid workers, one Spanish priest, one Nigerian and two Liberian doctors have been treated with ZMapp, there has so far been just one death – 1/6 is good odds in this Ebola outbreak.  So why can’t more people be treated with this promising drug?  Well … because there is none.  And there won’t be any more for a few months.  This is not a limitation that is exclusive to ZMapp – we can expect other drugs to be limited in their availability to meet demand.  So why is that?

Sad but true, the bottom line is cost.  It takes a lot of money to go through the process to develop and test new drugs, and someone has to pay for that.  The immense costs associated with developing and trialling drugs either comes through grants or is met by pharmaceutical companies who will make a long-term profit gain if the drug is successful.  In order to make a business case for this process, either grant-funders or commercial organisations need to see a return on investment.  But previous outbreaks have been small and contained – there simply have not been that many Ebola cases in the past, certainly not enough to justify more than a modest investment, horrible though the consequences are for those that are infected.  So the money has not flowed in, the early development work has been slow, and the drugs are not ready to cope with this unprecedented level of demand.

Secondly, it’s easy for non-specialists like me to imagine someone just has to turn on a machine in order to pump out whatever synthetic products go into these drugs – but I understand it’s not like that.  Taking ZMapp as an example, manufacturers Mapp Bio explain that the humanised antibody proteins that make up the drug are grown using a low-nicotine tobacco plant as a host.  Once the plants mature, they are harvested and the antibody proteins need to be extracted, purified and tested before they can be made into a drug.  This is not a process of pulling a lever, it takes time to grow the basic components of the drug.  No matter how eager organisations may be to invest in this process now, it still takes as long as a tobacco plant to grow before you get any results.

Finally, in order for a drug to be produced on any significant scale it needs to be licenced, which means it first has to go through a clinical trial.  Clinical trials happen in a number of stages – the first stage tests the drug for safety using up to 100 health volunteers.  That is achievable – if the drug is produced.  Health volunteers are relatively easy to come by.  But the second, third and fourth stages of the trial require larger numbers of ill people, because they are not testing only the safety of the drug, but also the effectiveness of the drug in treating the disease it is designed to treat.  To conduct a phase two trial, usually several hundred people will be involved.  The problem with Ebola is, you only have these people available in the context of an outbreak, and no one knows when or where an outbreak may take place.  There is no precedent to the scale of this outbreak – there have already been more than five times the number of cases that any previous outbreak of any Ebola strain has accumulated.  This outbreak could provide a sufficient number of cases for a clinical trial to progress – but no one could ever have known to be prepared.

Ethics and experimental treatments

Last week the WHO approved the use of experimental treatments in the Ebola outbreak in West Africa.  There had been mounting pressure about this issue, particularly after three leading Ebola experts called for the WHO to take the lead in agreeing the use of such treatments the week before (http://blog.wellcome.ac.uk/2014/08/06/experimental-medicine-in-a-time-of-ebola/).  The report of the 12-member panel that the WHO convened is now publically available, so let’s break down the dilemma …

What do you mean, experimental?  Before treatments obtain a licence, they go through a lengthy process of experimentation and testing.  Usually they are first tested on tissues in a lab setting – no live creatures involved.  They may then be tested on animals, and usually drugs must be successfully tested on two types of animals before they go forward to clinical trials in humans.  The WHO has expressed a preference for experimental drugs that have shown promising results on primates in the case of Ebola treatments that may be used in this outbreak.

In order to prove their worth, the bottom line for new drugs is that they must be safe and efficacious.  Safe means that they don’t hurt people – a few minor side effects are one thing, but we need to know if a drug might cause an unacceptable level of harm compared to the potential for good.  Efficacious means that they work.  The dilemma in the use of experimental Ebola drugs is that we don’t know, in humans, whether they are safe and efficacious.

Why should they be used?  Taking a drug when we don’t know either whether it will work or what negative effects it might have is a risk.  The question is, is it a risk worth taking?  The WHO has decided that in this instance, such treatments may be used on compassionate grounds (i.e. outside of a clinical trial), because the scale of the outbreak is unprecedented, and health systems in the affected countries are already way beyond their capacity.  At the end of the day, the only way of finding out whether an Ebola treatment is safe and efficacious is during an outbreak – and some of the drugs under development are ready for human testing.

What are the conditions?  Informed consent and understanding of the risks is vital for patients, their families and carers, and medical personnel administering the drugs, along with management of communities’ expectations more widely.  The capacity to care for the patient who is receiving the experimental treatment fully must be there, including monitoring and treating any side effects.  The panel asserted that there is a moral duty to collect scientifically useful information during the use of untested treatments that can be used to understand how safe and effective they are in the interim until clinical trials can be conducted.  Finally, the use of experimental treatments should not distract attention from the public health interventions which are the main means of controlling the outbreak.

Who gets them?  Perhaps the thorniest issue of all – technically, the WHO has agreed to the use of experimental treatments for possible treatment of those that are infected, for people who have been exposed to the disease but have not yet shown any symptoms (post-exposure prophylaxis), or for people who may be exposed (pre-exposure prophylaxis).  In reality, the supply of these drugs is very limited, so decisions need to be made about who gets it and who does not.  The main debate is about whether health care workers should be given priority – the main ethical principles for are reciprocity (after all, they are putting their lives at risk by treating Ebola patients) and social usefulness (we need them to fight the outbreak).  But where does this leave victims of Ebola in communities that have been affected?

It makes you wonder, under what circumstances would you agree to someone putting a drug in your body when no one knows whether it will work or the damage that it might do?  I don’t have the answer for myself, but I do know I would want to be given the choice.

No cure

I clearly remember the first time I heard of Ebola.  It was 2012 and I was in Juba, South Sudan with my husband.  He is a medical doctor, and was working in Juba Teaching Hospital, where there is an office that we were both using.  I was doing research on South Sudanese mothers’ experiences of medical care.  That summer there were a couple of Ebola cases in Uganda, and this made the news (Al Jazeera has been my first choice of news providers since that time because I was so impressed with the breadth of coverage).  At the same time, a rumour was going round the hospital where we were working that there was an Ebola case there in Juba Teaching Hospital.  As with most rumours, it turned out to be a false alarm.  However (after my hubby explained what Ebola was), I remember the disconcerting feeling of powerlessness from potentially being in the presence of an incurable, deadly disease.

Until I heard about Ebola I never realised how invincible I thought I was.  Don’t get me wrong – I know I could get hit by the proverbial lorry or some similar terminal mishap.  I acknowledge accident and injury as a real and serious danger.  But in relation to disease?  I am relatively young, fairly fit and healthy, and having lived the majority of my life in the Western world I expect to be immunised, to take prophylactic treatment or, should I contract a disease, to be provided with the latest treatments, without excessive cost (if any), and for these to be effective.  The thought of there being a disease with no cure and that we understand so little about out there seemed dark, mysterious, and incredibly unnerving.  As I experienced this reaction I was simultaneously painfully aware of the life of privilege my reaction betrayed.

When I was in Monrovia a few weeks back, I heard exasperated colleagues report that some unscrupulous people had been selling an Ebola ‘vaccine’ in the market, conning anxious laypeople with a false hope.  Perhaps even if you live in a context where the treatments you need for the diseases in my expansive ‘preventable/treatable’ category may be unavailable or unaffordable to you, there is something unnerving at the thought of a disease that no one could treat or cure.

The real cost to health

The number of cases continues to climb – as of 13th August, there have been 786 cases and 413 deaths in Liberia – that we know about. But I can’t help but think, horrific as the reality behind these figures is, it is the tip of the iceberg in relation to the impact of this outbreak on health in Liberia.

I was shocked to learn whilst in Liberia that the country has only around 150 of its own doctors – for a population of over 4 million people. At the best of times health care provision is limited – and many of these are working without all of the drugs or equipment they might need. It’s hard to imagine how demoralising it is for medical professionals to live in a context of overwhelming need and the skills but not the resources to help.

Unfortunately doctors and other medical professionals are one of the high-risk groups of contracting Ebola, due to their necessary contact with bodily fluids of patients with the disease. In fact, WHO Director General Margaret Chan reported on 12th August that so far in the outbreak as a whole 170 medical professionals have been infected, and 80 of these have died. That is a devastating blow to the health capacity of the region.

What about outside support, you may ask? Medecins Sans Frontieres has a huge presence in Liberia, but even this week their Emergency Coordinator in Liberia, Lindis Hurum, has announced,

“We have exhausted our available pool of experienced medical staff and cannot scale up our response any further ... We are Doctors Without Borders but not without limits.”

This of course is bad for the management of the Ebola outbreak, and we know that there are many more cases that never reach medical care than those that we know of. But what strikes me is, the usual health challenges that Liberia experiences are significant, and they have not gone away on account of the Ebola crisis. For example, the prevalence of Malaria is 50% higher in Liberia than in the Africa region as a whole, and it is the biggest killer of under 5s in the country. TB prevalence is more like 65% higher in Liberia than in the rest of Africa. Poor roads make road accidents common, often resulting in trauma. Where do you go, when health facilities are either overwhelmed with Ebola victims, or, in many cases, closed? Who will treat you when health workers are sick, dead, have fled due to fear and lack of payment for their services, or are busy in Ebola treatment facilities?

I wonder whether when all of this is done, someone will calculate how many extra lives were lost as a consequence of Ebola, even those that never contracted the disease? I wonder how many years health systems will be set back?