T~f SOUT~HIN MRICAN JOURNAL OF ~IV MfOICINf ----------- NOVfMEfR 2000

CARE ACCESS

M JHeywood, BA HOf/S (Oxford University> Head: AIDS Low Projecf, and Centre for Applied Legal Studies,
University of the Witwatersralld

THE CAPACITY OF SA'S HEALTH INFRASTRUCTURE
TO EXPAND ACCESS TO TREATMENT

During the management of most HIV-infected people, clini-
cians will reach a point where 'care' requires access to prophy-
laxis for the treatment of opportunistic infections (Ols), and
ideally to antiretroviral (ARV) therapy At the moment, how-
ever, only two groups of people are able to access effective ARV
treatment: the small minority who can afford it and a small
minority of poor people who are taking part in clinical trials.

In the context of the current scientific knowledge about
the benefits of effective management of Ols and the proper
use of ARVs, this is a profound challenge to the principles of
medicine and public health.

Regrettably, when calls are made by groups such as the
Treatment Action Campaign [TAC) to expand access to ARV
treatment, HIV/AIDS clinicians, government officials and

Regrettably, however, the provision of pre-test counselling
remains the exception rather than the rule. In reality the
unlawful malpractice of private and public clinicians often
coincides from different vantage points. In the private sector
it seems that the objective of getting people in and out of the
surgery door within pre-set times does not allow for effective
counselling. This occurs particularly in relation to antenatal
screening. In the public sector, in contrast, the genuine lack
of trained counsellors and the pressure of large numbers
of patients are used to justify the frequent argument that
obtaining informed consent is 'not realistic:

The consequence is that many people are diagnosed with
HIV without an understanding of their status. These people are
later accused of causing new HIV infections because of their
inability to disclose their HIV status to their sexual partners;
something that could have been avoided if they had been
properly pre-test counselled.

The same arguments could be made in relation to confi-
dentiality. The promise of confidentiality (even if not absolute)
is necessary to encourage wider take-up of HIV testing and
treatment. Yet breaches of confidentiality and a profound
lack of appreciation of its importance - even from a medical
perspective - remain the norm.

It is therefore vital for the HIV Clinicians Society to take a
very public stand on these psychotherapeutic ingredients of
good practice, and to defend confidentiality and informed
consent as essential aspects in the care and management of
people with HIV. Among other things this means lobbying for
increased public health expenditure and sufficient resources
for the provision of counsellors, as well as ensuring know-
ledge of and compliance with the Guidelines of the HPCSA.'

HIV TESTING - CONFIDENTIALITY
AND INFORMED CONSENT

HIV/AIDS presents a health and development emergency of
unprecedented proportions. In the words of epidemiologist Kevin
de Cock, it 'threatens to do more to undermine development in
Africa in the 21st century, than slavery did in the nineteenth'
(comments made at the UNAIDS!WHO Consultation on HIV
Reporting and Disclosure, October 1999). Faced with this threat
an extraordinary duty faits on health professionals.

The formation of the Southern African HIV Clinicians
Society has been a very important step in the regional re-
sponse to the AIDS epidemic, and the emergence of this
institution invites a frank discussion of the responsibilities of
'clinicians' who work in the field of HIV/AIDS.

The aim of this article, therefore, is to elucidate some of
these responsibilities from a human rights perspective and to
argue that clinicians must more visibly confront different
responsibilities at different ends of the spectrum in the
continuum of care for people with HIV/AIDS. The AIDS epi-
demic dictates that clinicians engage with public health, and
not just confine themselves to medicine'

Underlying this discussion is an appeal for better collab-
oration between 'activists' and clinicians around a plan to
improve understanding of HIV in society as rapidly as possible
and to discuss treatment possibilities. This is a necessary step
in the campaign to extend access to effective treatment
against HIV to all people with HIV!AIDS in South Africa. In
this context three major issues must be considered:

• The clinician's duties in relation to HIV testing, particularly
in relation to confidentiality and informed consent;

• The suitability of the available health care infrastructure
with regard to expanding access to treatment; and

• The role that clinicians should play in advocacy directed
at pharmaceutical companies and the government.

CLINICIANS AS PUBLIC HEAlTH ADVOCATES:
The Need for Health Professionals to be More

Vocal in Campaigns to Extend Access to
Effective HIVjAIDS Treatment

HIV is an unusual disease. Because of the long asymptomatic
phase of HIV infection, infection with HIV requires a higher
degree of self-management and understanding of the con-
dition on the part of the person infected than is the case in
many other illnesses. This is one reason for the emphasis that
has evolved on pre-test counselling, a duty that has not only
become a part of medical ethics (first elaborated in 1993 in
the South African Medical and Dental Council Guidelines on the
Management of Patients with HIV and AIDS), but also a legal
requirement' There is no dispute that with regard to HIV the
continuum of care starts before the HIV test is even performed
- with thorough counselling.



NOVf:MEfR ;JOOO -----------m SOUTHHlN AfRICAN JOURNAL OF HIV MEDICINE

pharmaceutical companies respond with a joint refrain: 'in-
sufficient infrastructure and the dangers of poor adherence in
developing countries: HOwever, as recent research in poor
communities in the USA and Brazil has shown, there is no
inherent barrier to drug adherence among poor people -
pointing to an important role for clinicians. Where an effort
is made to raise the level of understanding with regard to
HIV disease and treatment by assisting community-based
organisations to raise levels of 'treatment literacy', compli-
ance is improved.

'Infras ructure', on the other hand, is evoked to draw atten-
tion to a lack of capacity to diagnose HIV and to counsel
and monitor compliance, as well as to lack of sophisticated
laboratory facilities to measure CD4+, viral load and drug
resistance. This response does not stand up to scrutiny.

Health infrastructure should not be assessed using the
lowest common denominator. Debates about infrastructure
should not exclude the capacity of the private health sector
to provide services and treatment. In 199B, South Africa
had 162 private hospitals [with a total of 21 000 beds): 6B
regional hospitals, 281 district hospitals, and approximately
3 000 clinics. There is also an extensive network of private
laboratory services. If we are really dealing with a national
emergency, all of these resources should be marshalled to-
wards assisting with HIV prevention and care.

If a horizontal approach is taken towards available infra-
structure (i.e. if one that looks in all directions rather than
merely up and down), then the reality quickly emerges that
South Africa already has surplus capacity with which to expand
access to HIV testing, counselling and effective medicines.

Between 1990 and 1998 the private hospital sector grew
by 33%, and increased by 8 000 beds.' This is evidence that
health infrastructure can be quickly expanded - particularly
if the expansion is dictated by the need to prevent and treat
illness rather than by profitability.

On this basis, with government commitment and commit-
ment on the part of the private sector and private practi-
tioners to a genuine partnership against AIDS, it would be
possible to expand access to treatment immediately.

The Brazilian experience is relevant to this discussion from a
number of perspectives. like South Africa, Brazil is a develop-
ing country. It, too, has only recently emerged from years of
dicta orship and its government faces a legacy of foreign
debt, wide income disparities and a profound disjuncture be-
tween the metropolitan and rural areas.

In many ways the Brazilian and South African epidemics
have followed similar courses. Both epidemics began in the
early 1980s among men who have sex with men [MSM) (and
in Brazil also among injecting drug users), and moved increas-
ingly into the rest of the population, particularly among the
poor and marginalised'

However, Brazil differs from South Africa in its consistent
response to AIDS - a response that has by no means halted
the epidemic, but has slowed it down and made it more
manageable. What is unique about Brazil's response has been
its commitment to integrating and expanding access to treat-
ment into its general HIV/AIDS prevention strategy. In a
recently published UNAIDS Best Practice booklet this is
described as 'a degree of national daring ... that goes against
many of the recommendations on how a developing COUntry
ought to manage the epidemic:-

Table I provides a brief chronology of significant develop-
ments in Brazil.

The last decade of the Brazilian experience proves conclu-
sively that health infrastructure is not created in a vacuum.
It is created by need. In the words of UNAIDS, infrastructure
developed 'On becoming indispensable instruments in the
clinical laboratorial follow-up of HIV patients under antiretro-
viral therapy .. (and) contributed to the optimization and
more rational use of medicines'.8

In other words, public infrastructure develops when a gov-
ernment acts on the recognition that access to all dimensions
of health care is a human right - as well as a public health
imperative in HIV prevention.'

Other very tangible benefits have accrued from treating
AIDS. Most obvious has been the government's ability to
manufacture essential medicines and bring down imported
drug prices once it embarked upon a real as opposed to a
theoretical programme of treatment."

Finally, the public health benefits of these policies are in-
disputable. In Sao Paulo and Rio de Janeiro there has been a
48% reduction in the number of deaths among male patients
since 1995. Throughout Brazil there has been a reduction in
rate of hospital admissions, length of stay, and incidence of
opportunistic infections, with tangible cost savings such as
an 11% drop in the total national consumption of ganciclovir
between 1996 and 1998." In order to achieve this government
expenditure on drugs has been high - US$356 million in
1999. However, in addition to the impact that access to treat-
ment has had on human life and dignity, the programme has
resulted in estimated savings for the government public health
network of US$422 million between 1997 and 1999. In the
words of the Brazilian government: :.. the savings on intern-
ments, on welfare and on the number of years-of-life gained
show clear signs of a guaranteed sound cost-benefit ratio:

The outcomes of this 'daring' policy are evident. In 1997
Brazil (6Bth) was relatively close to South Africa (90th) in
its ranking on the United Nations Development Programme's
annually-revised human development index (HDI), which
includes in its measurement average life expectancy. Public
expenditure on health was 2.B% as opposed to 3.2% in South
Africa. At that time AIDS cases per 100 000 people were 6 and
6.8% respectively.

However, by the year 2000 the picture had changed drama-
tically. South Africa's position on the HDI had dropped to
103rd, a decline that the UNDP attributes squarely to 'the
drop in life-expectancy due to AIDS"

CUNICtANS AS TREATMENT ADVOCATES

The Brazilian experience is provided to try to convince health
professionals to become better advocates for a public policy
to expand access to treatment. Groups such as the South
African Medical Association (SAMA) need to be more out-
spoken in identifying and confronting the obstacles to ex-
panded treatment access.

The Durban Declaration is an example of an intervention
that was both strategic and timely. Although the Declaration
was literally trashed by the South Africa government, it was
not adversarial, merely a clear statement of medical science
with regard to the virology of HIV and the aetiology of HIV
and AIDS.

A similar consensus statement on the efficacy of drugs
used to treat HIVand the imperative to overcome obstacles to
treatment would be welcome. But this would compel clini-



THE SOUTHHlN AFRICAN JOURNAL Of HIV MEDICINE ----------- NOVEMBER 2000

TABLE I. ACTIONS SPEAK LOUDER THAN WORDS:
A SHORT CHRONOLOGY OF BRAZIL'S COMMITMENT

TO EXPANDING TREATMENT

1988 After years of military dictatorship Brazil adopts a new democratic
constitution that defines health care as a social right

1991 The National Programme for STD and AIDS decides to buy and
distribute ARV medicines.

1996 In the immediate aftermath of the Vancouver International AIDS Conference.
which reported on breakthroughs in the use of highly active ARV therapy (HAARD.
a law is passed establishing the right to free medication. The objective is to
'ensure access to ARVs to l()()qIJ of identified HIV patients in the country'.17

1996- Measures are taken to train health professionals, manufacture generic drugs. and
2000 to develop infrastructure for drug distribution and monitoring. The decision to

provide treatment also created a necessity to establish a national system of quality
of laboratory tests for STD and AIDS and a system of logistic control of medicines.

1999 87 500 public patients are in receipt of AIDS-related drugs.

1999 270 services in the country have ARVs available and outpatient follow-up for
people with HIV. By July 1999 the national CD4+ network had 70 units, while the
viral loads network had 55 units, performing 252000 and 165 000 tests a year.

cians to break their silence on the un-
justifiably high price of patented drugs.

A recent report by Medecins sans
Frontieres (MSF) illustrates how pricing
affects access" The report states the
obvious: 'doctors need drugs to care for
HIV infected people. Without them they
are simply managing decline and death.
These drugs must be available, afford-
able and properly used:

Advocacy concerning affordability is
not a political issue. It is an issue of
social policy and the common good. It
does not require that clinicians adopt a
stance that is anti patent or anti-profit
- rather one that is ardently pro public
health. Drastic and unconditional price
reductions would allow the most rat-
ional distribution and allocation of
medicine according to need and cap-
acity to distribute and dispense."

Unfortunately, the impression is that
many HIV clinicians are unwilling to do this. The reasons are
not too hard to decipher. To practice medicine it is necessary
to have access to medicines. Thus far, government has failed
to supply clinicians with this indispensable tool for practice.
Consequently many clinicians have been drawn to the private
health sector, or while continuing to work in the public sector,
they have entered into relationship with phar-maceutical
companies, with access to certain drugs achieved through
conducting clinical trials."

A relationship of almost feudal vassalage is at risk of
. developing. Forthright and sustained criticism of the price of

drugs becomes difficult when major pharmaceutical companies
are sponsoring clinical trials and scientific conferences. Hence,
the inclination to adopt the infrastructure escape clause, rather
than confront the issue of pricing.'"

CONCLUSION

Dn 9 July 2000 in Durban the Global March for Access to
Treatment handed over a Memorandum to the Minister of
Health, the director of UNAIDS and the President of the
International AIDS Society (IAS). A section of this memo-
randum saluted the contribution of clinicians to understand-
ing HIVand to research into treatments and vaccines. It called
on clinicians to 'make your voices heard side-by-side with us
in demanding additional public funding and the best use of
medicines for the greatest number of people' and to 'publicly
quantify and demand the funds that you consider necessary
for urgent and relevant vaccine research, the development of
effective microbicides and antiretroviral therapies that are
easier to use by children and adults in countries where there
is a shortage of food, water and electricity: It also requested
the IAS to 'Initiate and coordinate an international scientific
collaboration on a plan and timeframe for research:

The Southern African HIV Clinicians Society has an impor-
tant part to play in these efforts. We believe that clinicians
must base their actions on South Africa's constitutional obli-
gation to respect equality and promote and progressively
realise the 'right of access to health care services: An alliance
with public health activists around advocacy, improving treat-
ment literacy and expanding access to treatment is a sure way
of achieving these objectives.

END NOTES
1. Jonathan Mann distinguished medicine from public health as follows: 'Public health

identifies and measures threats to the health of populations, develops
governmental policies in response to these: concerns, and seeks to assure ct'rtain
health and related services. In contrast, medical care focuses upon individuals -
diagnosis, treatment, relief of suffering, and rehabilitation: Medicine and Public
Health, Ethics and Human Rights, Health and Human Rights: A &ader, eds Mann,
Gruskin, Grodin, Annas, 1999, Routledge.

2. In a case known as CvMinister of CorrectionoIServices, the judge found that 'it is
axiomatic that there can only be consent if the person appreciates and understands
what the object and purpose of the test is, what an HIV positive result entails and
what the probability of AIDS occurring thereafter is:
The 1993 SAMDC Guidelines are currently being revised by the Health Professions
Council.

4. 1998 South African Health Review, Health SyStems Trust, 1998, p. 148.
5. HST, 199B.
6. See: UNAlDS 8est Practices- The Brazilian Response to HIV/AlDS, 200Cl, chapt 2,

Epidemiology. The initial profile of transmission, characterised by the predominant
spread of HIV among educated MSM of a high socio-economic level. similar to
North America and Europe, gradually altered in the direction of heterosexual
transmission concentrated in marginalised and impoverished sections of the
population: p. 19.

7. UNAlDS. The Brazilian Response to HIV/A1DS, 2000, p. 15.
8. See: UNAlDS, The Brazilian Response to HlV/A1DS, 200Cl, especially Chapt 3, Care and

Treatment; also Ministry of Health, The Brazilian STD and AIDS Programme. Care
and Treatment, 200Cl.

9. It is important to underline here that the approach adopted by the SA government,
whereby 'prevention is the only cure', excludes from the national effort all those
who are already infected and is a disinct'fltive for voluntary HIV testing. By contrast
the prospect of expanded access to treatment will encourage testing - and thus
play a direct part in prevention.

10. The annual COSt of double therapy with nudeoside analogues decreased on average
by 8~ between 1996 and 2000... For triple therapy the cost reduction was 36llb
over the same period: UNAIDS, Report of the Global HlVfAlDS Epidemic, June 2000,
p. 102.

11. UNAlOS, The Brazilian Response to HlVfAlDS, p.45.
12. UNDP Human Development Report 2000,150.
13. HlVfAlDS Medicines Pricing Report Setting Objectives: is there political will? MSF,

July 2000.
14. Drug donations are lsometimesl welcome. But they do nOt address underlying

issues- Donations to the public sector, such as the recent restrictive offer of free
Dlflucan by Pfizer, ignore the fact that many poor people seek health care through
the private sector. Restricting donations to the public providers risks adding to the
disjuncture between public and private health care, as poor people afe compelled to
turn back to the public sector in order to ~s essential medicines-

15. 1998 Health Systems Trust SA Health Review shows how 'most recent graduates are
employed in the public sector, and nOlo of all doctors who qualified in the previous
5 years are working in this sector. In contrast 10 years following qualification, the
majority are working in the private sector. p. 150.

16. This situation creates a self-perpetuating vicious circle whose adverse
consequences for medicine are enormous. Willing buyers are created among
clinicians through the advertising and sponsorship campaigns of research-based
pharmacetJocal companies- Similarly, clinicians are placed in situations of very
dubious ethics when they engage in 'short-course' drug trials to find a regimen of
reasonable efficacy, where the main rationale for the trial is to try to make the
intervention affordable - something that could be done much more easily by
reducing drug prices-

17. UNAlDS, The Brazilian Response to HIV/AlOS, 200Cl, p_ 41