This sorrowful experience was shared by a 15-year old girl in the West regional capital of Cameroon, Bafoussam during a sensitisation and motivation campaign carried out by the FALCOH Foundation among adolescents living with HIV as part of the 2018 World HIV day commemorations. This tale, one of many, left the entire crowd of participants and facilitators sobbing in grief.

FALCOH members (clinician, psychologist, nurse, PH expert) interacting with participants

It is hard to believe that in this day and age, when there has been sustained global attention on the fight against HIV/AIDs and the promotion of women, children and adolescents’ health, HIV positive adolescents continue to experience stigma in hospitals and schools in low-middle income settings like Cameroon. A lot of investment (time, money, research and technical knowledge) has gone into eliminating stigma against HIV patients around the world, however, it appears that programmatic approaches to improving the quality of HIV/AIDS services (or any other vertical disease programme) which are done in silos without consideration for wider health service quality improvement, do not resolve the issue. Are global public health efforts missing the elephant in the room? And is there an aspect of quality improvement that HIV interventions, and the wider health system, have to pay attention to?

The one thread which has been identified to run through quality health systems, services and care is compassion. In recent times, quality health care has been highlighted as a prerequisite to achieving (quality) primary health care for Universal Health Coverage. For such safe, effective and people-centred care to be delivered there is a growing need for strong public health systems which design health services around individuals, with the full engagement of communities (personnel-personnel, personnel-user, facility-facility), yet this kind of engagement is lacking in most health service delivery systems in LMICs. Besides, what does it mean to be compassionate and how readily is this component of quality exhibited in healthcare delivery in Cameroon?

It is a common saying (and a biblical principle) that you should treat others as you would have them treat you. The feeling of empathy towards another’s suffering or pain and the drive to help relieve them of their suffering is the underlying principle of compassionate care, and compassion is deeply rooted in love for one another, an acknowledgement made by Donabedian (the father of quality in healthcare). Yet, isn’t it also true that you can only give what you have? By simple logic, it is clear that a health worker who is ‘not loved’ or well-treated by the system will find it hard to be compassionate.

Most HIV interventions have prioritised training programs for focal persons who are directly involved in HIV care, and some of these capacity building sessions usually have technical, as well as behavioural change dimensions. However, the health personnel are sometimes transferred from the facility where they were trained even before the programme is rolled out. In addition, poor transition mechanisms in health services often create a knowledge vacuum and disruption in the continuity of care. In fact, in some settings like the one mentioned above, patients’ antiretroviral treatment has been disrupted because the staff who initiated the patient on the regimen was absent for a variety of reasons. This highlights the importance of  personnel-personnel or personnel-facility engagement. Besides, how often do the donors or care providers involve service users in designing training programs and care plans? And how often do we involve the teachers and other relevant stakeholders in designing the care plans of adolescents living with HIV?

Although a few day care centres exist in urban settings for paediatric & adolescent HIV care, most of the HIV treatment centres in my setting, like the ones our participants attended, are not adolescent-sensitive. Surprisingly, we realised that most of the adolescents we encountered have been swallowing pills blindly for years and even when they reached the age of disclosure of status this was hardly ever done. Often only their individual curiosity led them to the discovery that they had been HIV positive all along. This is not surprising when one thinks about the fact that many of their parents have passed away and some of them depend on relatives as benefactors. Besides, the healthcare is not tailored to meet their individual needs, anxieties or challenges; for instance, in the case above, the caregivers were not compassionate enough to realise that they were stigmatising the 15-year old, or that she had dropped out of school as a result of the same stigma from her teacher and peers. But perhaps this lack of compassion is a reflection of the entire health system.

Many health workers in LMICs must live with miserable salaries, deplorable working conditions and poor leadership, however HIV, and other heavily-funded disease programmes, provide regular training, better service delivery platforms and financial remunerations for health workers employed in such programmes, in order to improve the quality of their services. This creates a two-tier system within the same facilities and promotes envy, apathy and discontinuity in health services from the staff involved in routine care, so, the staff attitude may just be a reflection of the insensitivity embedded in the wider health system. The question then is, how can policymakers or donors in HIV and other vertical programmes improve the quality of healthcare for adolescents in the context of deficits in the health system as a whole?

First, HIV care has to be integrated into the general health care delivery. Resources for HIV interventions and other vertical programmes should serve as levers for strengthening the general workforce and building trusted relationships within health facilities, and between caregivers and local communities. Furthermore, enhancing compassion for quality care should be prioritised by all capacity building programs for staff within the entire health system. This will produce a boost in return on donors’ investments, and optimise the outcome (users’ satisfaction) from these interventions.

Second, special adolescent corners should be created in all HIV treatment centres in all health districts in Cameroon. Adolescence is a very delicate period in anyone’s life and stigma from the communities regarding a positive HIV status, may cast the dice in the wrong direction. They may for instance be traumatised when health facilities and schools which ought to serve as safe spaces become breeding grounds for stigma. To highlight the extent of the damage stigma can cause, the 15-year-old we encountered during the FALCOH campaign is currently enrolled for psychotherapy. Not only did she drop out of school, she also became severely depressed and delusional. This is particularly galling because a little compassion was all she needed from her caregivers and tutors, to live a normal life and fulfil her dreams in life.

Third, in addition to setting up these special care centres, a mechanism should be put in place to identify and actively engage all the significant others in the life of the adolescent in designing and planning for their healthcare – this is important because some of them in the course of seeking affection and care have ended up with early pregnancies which further compound their care needs. At the appropriate age, the status should be disclosed and the adolescent should be involved in designing their care plans according to their needs and preferences. In addition to training nurses and other clinicians to perform counselling roles, it is beneficial to have a psychologist or social worker in the care team.

Fourth, refocused sensitisation campaigns against stigmatisation should shift attention from local communities to the technical communities (teachers, nurses, midwifes, laboratory technicians, doctors etc). We had always assumed that these groups are knowledgeable enough to understand the sensitivity of the subject of HIV or any other pathology, but research has shown that behavioural change depends on many other factors in our environment, rather than acquired knowledge alone. The neuroscience of communication is one of those important factors which has to be taught and applied in building trusted relationships for compassionate care.

Favour Low-Cost Healthcare Foundation (FALCOH) team in Bafoussam, Cameroon

So, as we commemorate HIV week, let us be aware that HIV/AIDs stigma is still very much well and alive in LMICs like Cameroon, and this even more so for vulnerable groups like adolescents. We have to remove the log of stigma from our (clinicians’) eyes before seeking to remove the specks from the eyes of local communities. Compassion has to be carefully kneaded into healthcare, irrespective of the programme, if we are to reap the desired outcome (users’ satisfaction) in terms of quality, and the engagement of civil society organisations which are key actors in driving communication and behavioural change to improve the quality of healthcare for adolescents must be prioritised.

A lot of progress has been gained from global public health efforts to combat HIV/AIDs, but much still remains to be done to achieve quality UHC in which adolescents infected with the virus will not be left behind. It is not their fault that they are HIV positive. The health system is expected to promote well-being and ensure healthy living for all citizens, including HIV positive adolescents. To achieve this, the sexual and reproductive health and rights of adolescents must get priority in the policy and strategic planning for health in the country.

Then one day, I received this 62-year old lady in my consultation room with a longstanding history of hypertension and Diabetes Mellitus (Type 2). She had traveled widely for her health problems within and outside of the region and had been seen by many physicians, GPs, and specialists alike. She had 4 consultation booklets full of histories and prescriptions. Confronted with this I was completely lost on how and where to start addressing her problems.

To begin, I used about 3 minutes to flip through the pages of her many medical booklets. Later I gave her the moment to express her concerns on the onset of her illness and how she had been struggling with it. She had my full attention because I was very keen to understand the root causes of her predicament.

The old lady narrated her experience with these chronic diseases while I patiently listened, and like a clueless investigator seeking for answers, I probed with questions inspired from perusing her booklets earlier. At the end of this exchange, behold, the old lady broke into tears before me. I was so embarrassed thinking I probably asked a wrong question or insulted her in a way ignorantly.

When she was calm and stable again, I asked her curiously why she had reacted the way she did. She told me, “My son, I have been to so many doctors, some specialist and far older than you are. But none of them has ever taken the time to listen and talk to me the way you just did”. I didn’t know how to interpret these words and the emotions around them. First, I had a feeling of fulfillment that I was on the right path to my calling as a medical doctor, but later a feeling of empathy and grief followed because I myself have also lost a loved one to the same health system ‘s insensitivity to the needs of its patients.

As I reflected on this experience in the course of my practice, I felt that maybe I had a lot more time to listen to this lady as a medical student than a full-blown GP or internist. However, as I reflect deeper I realize my keen interest to listen to her so passionately was motivated by the feeling of empathy and curiosity to find solutions to her problem. Put differently, I showed ‘compassion’ – the humane quality of understanding suffering and wanting to do something about it. Besides the complex nature of her case, the impression of ‘incompetence’ on my part to single-handedly address her problems was even more preoccupying. Therefore, I felt compelled to follow her story to understand the evolution of the illness, identify her concerns and preferences for care.

In my experience in clinical practice, most practitioners fail to see this complexity in patients’ complaints. We have simplified them to “cases” with standard management protocols and guidelines to such an extent, that the moment a patient starts giving his/her complaint, the health professional quickly sums up the syndromes into a diagnosis, “Oh! This is another case of PID or diabetic neuropathy or stage 3 hypertension etc.”, and a list of investigations and a potential management plan already inscribed follows. This one-size-fits-all approach in medical practice has many limitations. Therefore, it is not surprising to note that diagnostic accuracy is wrong in about 40% of medical cases and that medical errors remain frequent.

This syndromic and case-oriented approach to medical practice is partly the result of the emphasis of medical curricula and training. The reductionist (simplistic) approach of the biomedical model, that focuses on germs and how they alter the human system, has not paid enough attention to the role of society, cultural and personal behavioral practices on the disease and its curative process. This view is perhaps changing now with the emergence of non-communicable diseases. By and large, however, standardized protocols and guidelines are still the mainstays in today’s clinical practice.

Most clinicians find it very difficult to divorce the arts of clerking and summarizing patients’ problems as cases, memorizing management guidelines and talking to “cases” rather than persons during ward rounds. These attributes emanate from our training and how we observed our professors in medical schools refer to patients by the names of their diseases. But the question is, can patients’ perceptions, expectations and needs also be standardized?

In some of our settings, quality has been reduced to the technical effectiveness of healthcare in the form of presence and adherence to clinical protocols, the use of modern technology and state-of-the-art equipment, among others. Am I saying that emphasis on technical effectiveness is wrong? Of course not. Incompetence in performing a Caesarean Section or poor management of a postoperative patient who ends up septic is a characteristic of bad quality healthcare. However, the technical effectiveness of care should not be void of compassion, rather both should be integrated and complement each other. My 62-year old patient could not understand the efficacy of antihypertensive and antidiabetic regimens, all she needed was a good listener and an empathic care provider. This was quality to her and to a host of others who visit our hospitals every day.

If the technical dimension of quality in healthcare is the cake, then compassion is the icing/cream on the cake. To echo the words of Tom Shakespeare in a BBC news article, “We need health professionals who are technically competent, but who can also demonstrate the virtues of compassion and empathy…”.

I believe that our greatest responsibility as health professionals in improving the quality of healthcare today is to be able to “decode” the perceptions of quality care by the beneficiary population. We need to acknowledge the uniqueness of people and their concerns and not define and manage them by their cases (diseases) only. At times, they just need someone to talk to and not necessarily a prescription. Until we begin to speak the same language of quality with the consumers of healthcare services, we shall continue to serve the cake without the cream.

So far, 2018 has seen an increased focus on quality in healthcare delivery. A report on delivering quality services was published recently by WHO, WB and OECD, and the launch of the Lancet Global Health Commission on High Quality health systems is scheduled for next week (6 September). Recently, WHO also launched a co-development call to explore ‘Compassionate Healthcare’, “the human aspect to improve quality of care”.

Let us hope that through these milestones we shall pay enough attention to the cream of the cake as well.

The issue of adequate access to essential medicines has (re)captured global interest as it increasingly affects both rich and poor countries. This was demonstrated by the recent UN High-Level Panel on Access to Medicines in which, among others, WTO member countries were reminded of the need to apply the TRIPS agreement/flexibilities enshrined in the Doha Declaration. In Cameroon however, access to essential medicines is still problematic; the fact that anti-retroviral drugs which are distributed free of charge in health facilities, are sold on the black market, illustrates this very well. Consequently, the vulnerable population continue to consume poor-quality medicines especially antibiotics and antimalarials, from unregulated roadside vendors.

The growing influence of private providers of healthcare, especially in LMICs, cannot be overemphasized. They range from low-quality/under-qualified, not-for-profit providers, to corporate commercial hospitals, and this heterogeneity makes the regulation and rating of service quality challenging.

In addition to the typical private providers, roadside medicine vendors also play a big role in the Cameroonian health system, because they are convenient, affordable, and socially and culturally preferred. These vendors however, usually have little or no medical training. As a result, the poor who are the major users, are often exposed to sub-therapeutic doses of medications and wrong prescriptions, which can lead to drug resistance (especially antibiotic drug resistance), renal failure or death from toxicity. In addition to this, they face the risk of catastrophic out-of-pocket spending, because of repeated sub-optimal treatment regimens.

Many institutions have been created and tasked with ensuring the safety of medicines in Cameroon. The National Drug Quality Control and Valuation Laboratory (LANACOME) for drug quality control and the National Central Supply of Essential Medicine agency (CENAME) for procurement and distribution of essential medicines with its regional network, are among the most important ones. Besides these, private-not-for-profit institutions like the Cameroon Baptist Health Services Board also procure, distribute and regulate medicines for their institutions.

The formal private-for-profit arm of the industry, dominated by large commercial pharmacies and pharmaceutical agencies, is regulated by official pharmacists’ associations, while the informal sector remains unrecognized and labelled ‘illicit’ by Cameroonian law. Consequently, for many years the policy has been to prohibit the existence of roadside medicine stores, with occasional raids to ‘seize and burn’ their products and seal the stores. These attempts can be likened to depriving the poor of their only source of medicines.

The fight against illicit medicines in Cameroon and her regional neighbors has proven  futile because of many reasons.  One is lack of political will, and the sub-optimal capacity of state agencies to control the quality, safety and efficacy of medicines circulating in Cameroon. For example there are undetected counterfeit medicines in both the informal market and health facilities, and regular stock outs of essential medicines in  national drug warehouses due to poor planning and a low percentage of the government budget allocated to health (5.4%).

Another reason is the insufficient number of registered pharmacies which also often dispense mainly expensive branded medicines, and are seldom accessible at night when most health emergencies are experienced by the poor. Furthermore, there are many trained health workers without formal employment who, together with a vast number of lay businessmen, have availed themselves of a plethora of generics from Asian companies & local manufacturers. They fill the vacuum created by an inefficient public health sector and an expensive formal pharmacy sector in Cameroon, and in so doing, make a living through the seemingly lucrative medicine venture.

Experience from many LMICs has shown that the complete prohibition of actors from the informal sectors is an enormous challenge. Cameroon should therefore try to find a way of incorporating them into healthcare delivery, perhaps by partnering with them to the best extent possible, while regulating them as much as possible. The country should adopt measures to engage informal medicine vendors in the improvement of the quality and coverage of essential medicines.

Firstly, these vendors can be organized, trained and supervised to enhance the quality of medicines, as demonstrated with informal providers in India. Secondly, augmenting the existing community response via dialogue structures can adequately inform communities, make public facilities competitive and discourage unofficial vendors. Thirdly, CENAME can improve coverage by creating Generic Pharmacy Franchise outlets which are accessible to the poor and easy to regulate, as is the case in Mexico and the Philippines, rather than limiting medicine supplies to public health facilities alone.

There is a strong need for national, regional and multilateral collaboration to reinforce regulations on the importation & circulation of medicines in Cameroon territory. Increasing government spending on health (and aiming for the Abuja target ) would be a laudable first step, as it would help to reduce out-of-pocket payments and the currently frequent stock outs of medicines. However, the challenges outlined above illustrate the fact that there are no easy solutions to the problem. Still, the system must be reformed, because without change, UHC will remain a distant dream for Cameroon.

Image by: Henri Okonkwo, THE SUN – Voice of the nation