The introduction of the appointment-book and other small revolutions:
What Diabetes can learn from Aids
Von Jochen Ehmer / SolidarMed
HIV/Aids has become more and more a disease which is characterised by factors, which can be compared with chronic diseases. Many experiences in the treatment of people living with Aids can be used for patients of non-communicable diseases.
We live in a globalized, but unequal world: Rich nations spend millions of Dollars for the consequences of life-style diseases such as hypertension, diabetes or stroke, and low income countries struggle to cope with conditions like malaria, diarrhoea, pneumonia or tuberculosis.
It is therefore not surprising, that 2/3 of Africa’s disease burden is due to communicable diseases whereas non-communicable diseases account for 90% of the burden in high income countries. Nonetheless, to conclude that low income countries are not affected by chronic diseases is wrong: Chronic diseases affect poor people worse than rich people and poor economies more than rich economies. Already now - and despite the low non-communicable disease burden – four out of five deaths due to chronic diseases occur in low and middle income countries. This unequal distribution in disease type and mortality goes hand in hand with an unequal distribution of the disease burden: WHO estimates that the general amount of disease in Africa is four times higher than in high income countries (measured in disability adjusted life years per 1’000 population).
This is the world of today, and future holds many odds. Climate change, security threats, migration currents, emerging diseases and economic instability are some of them. Certain developments, however, are predictable:
- Populations will age and will cause demographic change. In 30 years time, the number of people older than 65 will have doubled - largely due to an increase of life expectancy in low income countries. As a consequence, non-communicable diseases will increase progressively.
- In parallel, improved health systems and living conditions will lead to declines in mortality for the main communicable causes and provoke a change in disease pattern and burden.
- This double demographic and epidemiologic transition will make the 21st century, as the former Nigerian president Olusegun Obasanjo puts it, “a century of chronic diseases”.
What are the implications for policy makers, donors and health institutions? And how can we avoid that the “century of chronic diseases” turns into a disaster for the most vulnerable?
Most illustrative success stories in global health relate to non-chronic diseases. The introduction of long lasting impregnated bed nets, childhood illness algorithms (IMCI) or new vaccines are some examples. There is one remarkable exception: The history of Aids.
Shared features with chronic diseases
HIV has started as a devastating, acute infection in the 1990ies, destroying millions of lives within years. It has hit Africa as a silent Tsunami, a gigantic wave rubbing out generations, turning children into orphans and pressuring health system beyond limits. The impact of the disease goes far beyond health, with social, cultural, economic and political consequences. In many Sub Saharan countries, Aids has decreased life expectancy by at least 10 years (often from 45 to 35 years). It is still the leading cause of mortality in both men and women in Africa. Currently, ca. 33 Mio people worldwide are infected, 70% of them in Sub Sahara Africa, with 2,5 Mio new infections and 2,1 Mio Aids deaths occurring every year.
Aids has led to widespread human suffering. But it has generated a global coalition of people determined to prevent and treat the disease, and to care for the sick. Grassroots organizations, philanthropists, policy makers, research institutes, private sector companies, patient groups and funding bodies: They all have joined forces to sustain the momentum. As a consequence, funding has increased ten fold since the year 2000 (reaching 10bn USD in 2007), new antiretroviral drugs have been licensed, treatment prices have been falling, technologies have been developed and new global institutions have been created. The UN has set clear and measurable targets. This global determination to act on Aids has led to unexpected results, with currently 4 Mio people on life saving ARV’s and 45% infected mothers accessing treatment to prevent transmission to the baby. The massive treatment roll-out has transformed patient’s lives, health systems, policy maker’s minds and the disease itself, which has turned from an acute illness into a chronic condition, necessitating life long treatment. And despite certain specificities such as its association with stigma, sexual transmission, alternation between phases of well being and acute illness, and the need for laboratory support, HIV today shares most of its features with other chronic diseases.
The management of Aids as chronic condition in Africa is highly successful, with positive consequences both at individual and population level: The current life expectancy of HIV positives in South Africa after the first year of treatment is almost as high as in the general population. The number of Aids deaths has begun to decline on global scale. ART has led to decreased population level adult, infant and under-five mortality. And there is growing evidence that ART has an important causal link to reduced HIV incidence and prevalence.
Why is the antiretroviral roll-out such a success story? And what lessons can be learnt for other chronic diseases?
SolidarMed as Swiss organization for health in Africa implements a region wide HIV treatment and prevention program in four Sub-Saharan countries since the year 2004, in nine hospitals and 39 health centres. Together with its local partners, SolidarMed cares for more than 20’000 HIV positive patients and treats more than 6’000 people with antiretroviral drugs. The following eight key lessons learnt, relevant for chronic diseases, can be drawn from this experience:
1) Human resources for health
Health professionals are the basis of every health system. They need to be trained, motivated and available in sufficient numbers. Chronic disease management requires new, additional health worker categories such as counsellors, data clerks or receptionists. As patients come back regularly, it also requires more health professionals.
As an example: Moçambique has 0.36 full time equivalents of health workers per 1’000 population (2004 figures). 2.5 health workers per 1’000 population are needed to achieve the Millennium Development goals. And 8 health workers are needed to treat every 1’000 people with ART. It is not surprising, that HIV has forced health systems to pilot new approaches such as task shifting, participation of lay workers or the collaboration of counsellors within care networks. Moreover, various clinical, operational or counselling mentoring schemes have been tested and introduced at large scale. All these experiences are well documented and lessons learnt are widely available. A recent edition of the journal “Aids” (Nov. 2009) reports that Moçambique has tripled the number of ART-prescribing facilities within six months by using mid level health workers to manage HIV.
2) Adherence and Retention
Adherence to treatment and retention in programmes are important for all chronic diseases. In the case of HIV they are fundamental, as non-compliance promotes resistance to ART. HIV has told us, that chronic disease programs need to understand the barriers to adherence and retention (which are often context specific) and must address them proactively. Cost, distance, stigma, waiting times, treatment complexity or low understanding of disease mechanism are some of them. To promote a client-centred culture and to increase access, HIV programs have experienced various strategies: Treatment buddies, pharmacy counselling, transport vouchers, food support, pill count, adherence measurement scales, flexible opening hours, patient flow-charts, SMS-reminders, free treatment and care, home based counselling, peer educator sessions and directly observed treatment for low adherent patients are amongst the most popular. Tracing of patients lost to follow-up through self help groups or community committees is another strategy, which – in addition – increases the acceptance and popularity of treatment programs at community level.
3) Interdisciplinary care teams and chronic disease units
Chronic (HIV) care in Africa is only possible within a nurse based system, building on nurses as central pillars of the care team. To provide quality services, however, the team must be multi-disciplinary, with doctors providing specialized back up, pharmacists and laboratory staff understanding their roles, counsellors and peer educators offering patient support, data clerks and receptionists handling the monitoring, and other sector staff (such as Tb or MCH) completing the care network. Whereas the introduction of such interdisciplinary teams is one of the biggest merits of HIV, mechanisms to ensure smooth patient referral and adequate treatment quality must be established.
4) Infrastructure, logistics, communication and technology
The management of long term conditions such as Aids relies on the availability and functioning of infrastructure, logistics and communication. Rooms for counselling, cars to bring drugs, telephones to announce referrals – theses are the basics which need to be in place first. This seems to be a banality – it is not. Before it can be charged with programmatic burdens, the basis of a health system needs to be solid.
In addition, HIV has shown that it is possible to upgrade rural laboratories with modern technologies such as CD4-machines, if a supporting environment for maintenance, repair, quality control and reagent provision is established and sustained.
5) Prevention and Treatment
Treatment and prevention are two sides of the same coin, taking HIV or taking Diabetes. Prevention can work if interventions are complementary, messages consistent, action-frameworks multi-sectoral, information coming from different sources, target groups well chosen, governments showing stewardship and strategies validated at population level. In the case of HIV, the last point has been of specific difficulty; population based prevention strategies need to be evaluated further. Strategies to prevent disease must also take cultural and gender specificities into account (even more to prevent HIV, due to its association with stigma and sexuality), and should closely be linked to the communities.
An important lesson learnt is that efforts to treat and prevent should go hand in hand, and not through parallel, non communicating coordination systems.
6) Measure, measure, measure
“Putting patients first” means aiming at the highest possible treatment quality. Continuous improvement of service quality and efficient use of limited financial resources are not self evident. They depend on continuous program monitoring, introduction of new approaches and analysis of achieved results.
Essential for treatment, operational research is also the heart of effective prevention: Prevention doesn’t know magic bullets, and solutions are often context specific. Easy concepts have far too often proved wrong (such as the idea that HIV is more frequent in poor people); social determinants are fundamental but not always easy to understand.
It is no wonder that HIV has generated a paradigm shift: It has put operational research at its due place, into the spotlight. The Sydney Declaration of the International Aids Society calls for 15% of all HIV-funds to be earmarked for research and evaluation. This goes far beyond the traditional “project monitoring” and contributes to a momentum supported by complementary initiatives such as the health metrics network. It is a difficult but important task to communicate the value of operational research to donors and policy makers.
7) Global coalitions and realistic judgement of interests
One day of lipid-lowering treatment costs three times more than one day of ART.
Why is that so? And who shall pay for the lipid drugs in Africa?
HIV treatment has become affordable only after drug prices fell substantially and after generic drugs have been introduced into markets. Charles de Gaulle once said: “States don’t have friends, states have interests.” The same is true for drug companies, which play an important role in the management of any chronic disease. It is worthwhile noting that company and Government interests do not necessarily match with those of patients in Africa; in some cases, they are opposed. The current discussion about an ART patent-pool is a good example. The decrease of ART drug prices was only possible with strong and intelligent lobbying at all levels (from MSF to Bill Clinton). In parallel, alternative funding strategies such as UNITAID, Global Fund rounds, private-public-partnerships or campaign-RED have contributed to an increase in available funds for HIV.
Development assistance for health is still largely under-funded. It seems important that different health sectors (maternal health, malaria, child health or HIV) do not play against each other, but join forces to claim the resources they need.
8) Diagonal, public health approach
It was a long way from Alma Ata to the Millennium Development goals, followed by an important learning curb. Whereas clear targets and disease specific funding have enabled the unprecedented roll out of ART, negative side effects of vertical implementation have also been noted. Disease specific programs do certainly strengthen health systems, but they should be implemented diagonally and should include “do no harm” monitoring elements. For HIV, it was important to discuss these issues – it was equally important to move beyond the “horizontal-vertical” – debate.
The biggest lesson learnt from HIV is the feasibility and success of the WHO-led public health treatment approach, offering simplified and evidence based treatment algorithms for a condition which is complex and difficult to manage. This public health approach has enabled the current treatment of 4 Mio people. The future challenge will be to keep them under treatment, to scale up further, and to provide treatment of better quality.
As Winston Churchill said (in 1942, referring to the battle of Egypt): “This is not the end. It is not even the beginning of the end. But it is perhaps, the end of the beginning.” The same is true for HIV.
*Jochen Ehmer is living with his family in Basel. He is a general practitioner with further training in humanitarian aid (Bochum, Aix-en-Provence), tropical medicine (London) and HIV-medicine (Johannesburg). Experiences in developmente cooperation with Cariats, European Commission Humanitarian Office and as country coordinator in Mozambique for SolidarMed. Since 2007 he is responsible for the HIV programmes of SolidarMed as well as the country programme Mozambique at the SolidarMed office in Switzerland. Contact: firstname.lastname@example.org
Jochen Ehmer would like to thank Thomas Gass for his valuable contributions.
Selected further reading
- Peter Piot, Michel Kazatchkine: Aids: Lessons learnt and myths dispelled. The Lancet. March 2009
- Ford, Mills, Calmy: Rationing antiretroviral therapy in Africa - treating too few, too late. New England Journal of Medicine. April 2009
- James Shelton: Ten myths and one truth about generalised HIV epidemics. The Lancet. December 2007
- WHO, UNAIDS, UNICEF: Towards universal access. Scaling up priority HIV/AIDS interventions in the health sector. Progress report 2009. December 2009.
- Ooms, Van Damme, Temmerman: Medicines without Doctors: Why the Global Fund Must Fund Salaries of Health Workers to Expand AIDS Treatment. PLoS Medicine. April 2007
- Health and Women: Today’s evidence, tomorrow’s agenda, WHO. 2009.
- Christensen, Doblhammer, Rau: Ageing populations: the challenges ahead. The Lancet. October 2009
- El-Sadr, Abrams: Scale-up of HIV care and treatment: can it transform healthcare services in resource-limited settings? Journal AIDS. 2007
- Rosen, Fox, Gil: Patient Retention in Antiretroviral Therapy Programs
in Sub-Saharan Africa: A Systematic Review. PLoS Medicine, October 2007
- The WHO ART guidelines: http://www.who.int/hiv/topics/treatment/revisions/en/ (accessed in December 2009).
- Kenneth Sherr et al: The role of non-physician clinicians in the rapid expansion of HIV care in Mozambique. Journal Aids. November 2009.
- Rabkin et al: The Impact of HIV Scale-Up on Health Systems: A Priority Research Agenda.
Journal Aids. November 2009.
- Brinkhof et al: Mortality of HIV-Infected Patients Starting Antiretroviral Therapy in Sub-Saharan Africa: Comparison with HIV-Unrelated Mortality. PLoS Med. April 2009
- Punishing success: Early Signs of a Retreat from Commitment to HIV/AIDS Care and Treatment.
The MSF Access to Essential Medicines Campaign. November 2009