The
“Free by 5” Campaign for Universal, Free Antiretroviral Therapy
User fees
pose a significant barrier to achievement of the “3 by 5” strategy
Alan
Whiteside *, Sabrina Lee
Alan
Whiteside is the Director of the Health Economics and HIV/AIDS
Research Division (HEARD) at the University of KwaZulu-Natal
in Durban (http://www.heard.org.za). Sabrina Lee is a graduate of the Development
Studies Masters programme at the University of KwaZulu-Natal
and a research assistant at HEARD.
Competing
Interests: The authors declare
that they have no competing interests. AW's time in preparing
this article was supported by a British Department for International
Development Knowledge Programme. The views expressed are the
authors' alone.
Published:
July 19, 2005
DOI:
10.1371/journal.pmed.0020227
Copyright:
© 2005 Whiteside and Lee. This is an open-access article distributed
under the terms of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and reproduction
in any medium, provided the original work is properly cited.
Abbreviations:
ART, antiretroviral treatment; UNAIDS, Joint United Nations
Programme on HIV/AIDS; WHO, World Health Organization
Citation:
Whiteside A, Lee S (2005) The “Free by 5” Campaign for
Universal, Free Antiretroviral Therapy. PLoS Med 2(8): e227
*To
whom correspondence should be addressed. E-mail: whitesid@ukzn.ac.za
The Free
by 5 declaration (http://www.ukzn.ac.za/heard/freeby5/freeby5.htm), launched in November 2004, is a campaign to achieve
free access for all individuals with HIV to a comprehensive
minimum medical package including antiretroviral treatment (ART).
The declaration was developed in response to the World Health
Organization (WHO) and the Joint United Nations Programme on
HIV/AIDS (UNAIDS) “3 by 5” strategy, which aims to scale up
access to ART to ensure that 3 million people have access to
ART by the end of 2005 [1].
We believe that the declaration made an important contribution
to the debate on provision of ART in resource-poor settings.
A number
of debates still surround the 3 by 5 strategy, including how
it will be operationalised and funded [1].
Questions remain over how the poorest and most vulnerable groups
can be reached and how a suitable level of adherence to the
drugs can be achieved to avoid drug resistance [2].
The Problem with
User Fees
Currently,
fewer than 8% of people living with HIV/AIDS in Africa are on
ART [3].
While user fees represent only one of the barriers to access
to essential ART, the Free by 5 initiative firmly states that
unless treatment is provided free of charge to all
in developing countries, 3 by 5 will struggle to meet its ambitious
target. Many countries still impose user fees for ART and associated
tests, and as AIDS is an impoverishing disease, this means treatment
is unaffordable for most [4].
We must
state clearly that we acknowledge that providing treatment free
of charge is not the only precondition for the scale-up of treatment
programmes. In most developing countries, the availability and
efficiency of health infrastructure is the dominant obstacle
to effective health care. Adequate primary health-care infrastructure
and staff is fundamental to the provision of treatment programmes.
However, we argue that where drugs and services are administered,
providing treatment for free would assist patients to gain greater
access to, remain adherent to, and avoid instability in treatment
regimens. Simply stated, the Free by 5 campaign maintains that
user fees are an additional and unnecessary obstacle to treatment
access and the efficiency and equity of treatment programmes
in the context of this major health crisis. Furthermore, removal
of patient fees as a significant barrier to access is realistic
and feasible in resource-poor settings
This article
outlines the Free by 5 campaign and its objectives. It sketches
the arguments for free treatment and describes how the initiative
influenced the debate surrounding HIV/AIDS treatment among donors,
international institutions, non-government organisations, professionals
in the fields of public health and economics, and the concerned
public.
Origins and Objectives
of Free by 5
The Free
by 5 initiative began as a challenge to one of us (Alan Whiteside)
at a Commission on HIV/AIDS and Governance in Africa meeting
in Maputo from Veronique Collard, an academic and activist,
who asked, “What do economists believe?” This challenge led
to the idea that a declaration, giving the economists' position,
could be adopted by the International AIDS Economics Network
meeting in Bangkok. A first draft was prepared and presented
at this meeting, but the reception from the assembled economists
was underwhelming.
| Box
1. Some of the Influential Signatories of Free by 5
Stephen Lewis, UN Special Envoy
on HIV/AIDS
Helene Rossier-Blavier, Director
General of AIDES France and Vice-President of the Global
Fund
Hoosen Coovadia, Victor Daitz Chair
in HIV/AIDS Research, University of KwaZulu-Natal
Philippe Douste Blazy, French Minister
of Health
Bernard Kouchner, Founder of Médecins
Sans Frontières, former French Health Minister
Omar Kabbaj, President of the African
Development Bank, Tunis
Max Essex, Chair, Harvard School
Public Health AIDS Initiative
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Despite
this, we decided to press ahead. Veronique gave freely of her
time in developing the initiative and was guided by many people,
particularly Bernard Taverne of Institut de Recherche pour le
Développement, Senegal; Alice Desclaux of University of Paul
Cezanne, France; Gorik Ooms of Médecins Sans Frontières (MSF)
in Belgium; and Alan Whiteside. We at HEARD contributed to the
costs involved and provided a secretariat. Countless others
in the field gave their support and enthusiasm, without which
the initiative could not have happened.
The overall
goal of the initiative was to gather support from professionals
and organisations to promote universal free access to a minimum
health-care package, including ART, for people with HIV. It
aimed to lobby international institutions, including UNAIDS,
WHO, and donors— such as the Global Fund, the World Bank, and
the US President's Emergency Plan for AIDS Relief—to adopt guidelines
and actively promote the principle and implementation of free
treatment. Donors were urged to pledge additional resources
to ART through long-term commitments. Finally, the initiative
sought to provide economic and public health evidence to inform
the decisions of policy makers and governments and assist activists
in their advocacy efforts.
What Do WHO and
3 by 5 Say about Free Treatment?
The Free
by 5 declaration makes the point that the 3 by 5 strategy is
unrealistic. Although the WHO seeks increased access to ART
for all people living with HIV/AIDS, it does not address the
costs at the patient level. The Free by 5 campaign believes
that free treatment is an absolute prerequisite to the scale-up
of treatment programmes and universal access to treatment.
User fees
inhibit patient adherence.
Despite
clear indications that patient fees inhibit access to treatment
programmes, as outlined in the following section, the WHO strategy
documents do not address this issue. Instead, the WHO treatment
guidelines make frequent references to “affordability.” The
WHO strategy published in 2003 recommended making antiretrovirals
affordable and providing them free of charge to the poor [5].
A revision of the guidelines recommends providing “medication
free of charge to those who can least afford treatment through
subsidized or other financing strategies” [6].
A 2004 Consultation Report stated that if “cost recovery schemes
prove inefficient or obstructive to access, free delivery to
all should be considered” [7].
It should be noted that much of this debate is confined to ART.
In the Free by 5 declaration, we recognise that treatment includes
testing, laboratory examinations, and associated drugs.
Arguments for and
against Free Treatment
What affordability
means and who is poor is not defined in these WHO guidelines.
Defining the poor by income level is problematic in countries
where the informal economy (that is, unregistered, unrecognised,
and unsupported employment) dominates and income records are
poor.
The process
of implementing exemptions based on income is a waste of scarce
financial and human resources as systems are costly to put in
place and administer. Exemptions or waivers rarely reach those
who are eligible to receive them [8].
While the WHO maintains that “free treatment would be difficult
to implement in many health systems” [9],
the Free by 5 declaration states that it will be easier and
more cost-effective to provide treatment to all patients free
of charge.
Countries
set their own criteria for access, and these vary. In addition,
perceptions of equity vary among and between governments, donors,
and activists. These variations are difficult to manage from
a clinical perspective and prevent equity from being attained
at a national and international level [10].
Existing criteria for access are inequitable: a first-come,
first-served basis favours the rich, more educated, and urban
people. Universal free treatment is necessary to achieve equity
in access and to avoid exclusion of the most susceptible and
vulnerable groups.
The Free
by 5 declaration details a number of arguments that have been
made against free treatment and gives evidence that counter
these views.
There are
claims that patients should pay in order to give value to treatment
and remain adherent to the drugs. Studies in Senegal have shown
that user fees inhibit patient adherence and cause frequent
interruptions in therapy [11],
and in Kenya user fees have led to the discontinuation of treatment
and delays in health-seeking behaviour [12].
The negative relationship between end-user costs and adherence
has also been echoed in data from Uganda [13],
Nigeria [14],
Botswana [15],
and the Côte d'Ivoire [16].
When ART must be paid for, patients are also more likely to
misuse drugs and purchase them on the informal market. This
ultimately leads to drug resistance. In some cases, the costs
of laboratory tests deter people from joining treatment programmes.
Providing treatment for free reduces delays in seeking care
and improves adherence and may influence the quality of care.
| Box
2. Some of the Organizations That Signed the Free by 5
Declaration
Norwegian Council for Africa
International HIV/AIDS Alliance
Treatment Action Campaign
National Agency for AIDS Research
(ANRS) France
Réseau Accès aux Médicaments Essentiels
(RAME), Burkina Faso
Fondation Femme Plus, DRC
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A major
argument against free treatment is that of AIDS exceptionalism.
In other words, why should AIDS be treated for free when others
diseases are not? There are three simple arguments countering
this view.
First, AIDS
is the worst epidemic humanity has ever faced, which has devastating
long-term social, economic, and personal impacts and is a major
obstacle to development. The exceptionalism of the disease requires
exceptionalism in the response. At the UN General Assembly meeting
on HIV/AIDS in New York, on 22 September 2003, WHO Director
General Jong-Wook Lee described the lack of ART as a global
health emergency. Second, other diseases are treated free where
there is a public health reason to do so. Third, it is feasible
to implement free HIV/AIDS treatment in resource-poor settings.
Given the nature of the AIDS epidemic, providing free treatment
should be an imperative even if it can not be applied to all
diseases or all in need.
It is argued
that patient fees are necessary to ensure the sustainability
of treatment programmes. However, in Senegal fees amount to
little more than 10% of the cost of drugs [11].
Patient contributions do not cover other costs such as staff,
training, and social services. Sustainability can be achieved
only through long-term commitments from donors and governments.
The WHO and UNAIDS estimate that the total cost of providing
treatment through the 3 by 5 initiative for 2005 is $3.8 billion,
and this will increase to $6.7 billion in 2007 [17].
The contribution made by fee-paying patients is negligible.
In Ghana, for instance, user fees amount to no more than a tiny
fraction of the Ministry of Health aggregate budget [18].
Therefore, providing treatment for free will have virtually
no effect on global resource needs. Significant resources still
need to be mobilised.
AIDS is
the worst epidemic humanity has ever faced.
The Impact of Free
by 5
The Free
by 5 declaration, which is available in French, English, and
Spanish, was disseminated worldwide through global MSF offices,
universities, schools of public health, and NGO networks. It
was signed by more than 600 people, many of whom are respected
public health professionals, economists, policy makers, and
key activists. Some of the influential signatories are shown
in Box
1. The declaration was also signed by a number of organisations,
shown in Box
2.
The initiative
sparked extensive debate among Internet-based development and
public health fora. It culminated in a media release, which
was disseminated widely among the global press. The initiative
was picked up by British, French, South African, and Kenyan
national newspapers as well as the UN IRIN Plus News. It was
also featured on a number of Web sites.
It is difficult
to asses the impact of the declaration over such a short time
frame. After the media launch, the declaration and list of signatures
were sent to UNAIDS, WHO, and the World Bank. We urged these
organisations to give unambiguous support to the implementation
of free treatment and take a lead in raising awareness about
the issue. We encouraged all governmental and nongovernmental
actors to adopt universal free treatment and actively promote
its implementation. We asked that the issue be included on the
agenda of technical meetings and political forums planned in
the framework of the 3 by 5 initiative, and reflected clearly
in all WHO/UNAIDS guidelines.
At the very
least, the Free by 5 declaration publicised the issue and the
importance of universal free access to treatment and created
a debate surrounding free treatment in public health, health
economics, and human rights circles throughout the world. It
is an issue that has been placed on the international agenda
for discussion.
For instance,
the Free by 5 campaign played a role in inspiring the recent
WHO/UNAIDS/World Bank meeting entitled “Ensuring universal access:
User fees and free care polices in the context of HIV treatment”
(21–23 March 2005). The meeting acknowledged that “for many
individuals in poor countries, affordability poses an insurmountable
obstacle” that depresses uptake of AIDS treatment programmes
and decreases adherence of those enrolled. The meeting also
noted that user fees contribute very little to overall sustainability
and that if AIDS care and treatment programmes are to be scaled
up, a broad shift to other financing models is required [19].
Conclusion
There are
many lessons from this initiative, but two are particularly
important. The first is that a good idea can, with the right
support, be turned into something concrete. The second is that
goodwill and good sense are as important as money in shaping
the policy environment. It was a small initiative with a big
impact. We hope that eventually we will see the fruits of our
efforts: universal free access to ART to all who need them.
We feel privileged to have been part of this important campaign.
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