Olivia Lunardo
Ed McDonald
Luc Miller
Sprague Group Notes
11/7/13
Honors 490
Reading Notes:
“The AIDs Rebel” by Samantha Power
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Place: Khayelitsha, Cape Town, South Africa
o 1983: blacks were force to reside in Khayelitsha by the apartheid
government
o Had one of the highest tuberculosis rates in the world
o 50,000 infected with HIV
African National Congress (ANC) – refused to distribute HIV drugs like AZT to
the public
Zackie Achmat
o HIV activist
o Chairman for TAC (Treatment Action Campaign)
o Believes HIV/AIDs is like diabetes, it can be managed (60)
o 1980: joined 60 other detainees on a hunger strike to get beds, books,
and radios for prison inmates  saw how effective mortal sacrifice
was (56)
o Refused to take antiretroviral drugs until everyone else can
Thabo Mbeki – ANC leader who succeeded after Nelson Mandela
Stigma for people who have HIV  see as automated death
o Defeat this stigma by showing you can live with HIV
o “In Africa, where AIDs mainly affected heterosexuals, the infected
were commonly branded as promiscuous, unfaithful sinners”(59)
Reasons why people in the ANC would not distribute antiretroviral drugs
o Believed they were harmful
o “Continues dependence on foreign ‘charity’ in [Mbeki’s] view, would
keep Africans locked in a state of subjugation” (58)
o David Rasnick – “Money should be steered not toward harmful
antiretroviral drugs but toward the improvement of nutrition and
sanitation” (62)
Eric Goemaere – Belgian doctor who opened HIV clinic at Khayelitsha
o “One young woman from Langa, a neighboring township, was so
desperate for medicine that she assumed the identity of a cousin from
Khayelitsha…generally only Khayelitsha residents are eligible for
antiretroviral. Even with this limited scope, the clinic cannot meet the
demand” (56)
Medicine Act – legislation in South Africa that allows them to override drug
patents and provide more affordable genetics
Achmat was originally targeting pharmaceutical companies and shaming
them until ANC denied to distribute AZT drugs
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Achmat bought drug for fungi in Thailand and smuggled them to South
African – pharmaceutical company (Pfizer) then offered that drug for free to
public clinics
Once AZT drugs were affordable “Mbeki had stake[d] his reputation on the
idea that the drugs were dangerous. The fact that they were now affordable
could hardly justify a change in course” (62)
Organized a civil disobedience protest and marched to the police station and
demanded to arrest the minister of health, minister of trade, and minister of
industry for “culpable homicide”
o Culpable homicide = illegal killing of a person either with or without
an intention to kill
Achmat health declines and decides to take the antiretroviral drugs
o Original protest served its purpose of getting pharmaceutical
companies to lower the costs
o Would do more harm by dying instead of being alive and helping his
comrades fight to make HIV antiretroviral drugs accessible
“Health system weakness constrain access to AMTC…” by Srague, Chersich,
Black
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Prevent mother-to-child transmission of HIV = PMTCT
4 public sector facilities studies
o Academic hospital in Johannesburg
o Gauteng
o Academic hospital (regional), Eastern Cape
o Academic hospital (primary health care clinic), Eastern Cape
Informed Consent – translators were present
Qualitative methods to understand women’s experiences of HIV services and
of delays or impediments to these services
Shortages in staff & supplies delay HIV testing for pregnant women
o Failed to receive test in first visit
o Eastern Cape – 1 nurse per facility running the PMTCT programe and
offering all HIV counseling
o No testing or counseling if nurse was away or for patients admitted
during the afternoons, weekends, or on public holidays
o “commonplace for nurses to depart for more promising posts in the
private sector or overseas” (3)
Delays in obtaining CD4 cell count results hinders ART initiation
o Necessary to determine ART eligibility
Lack of Healthcare Worker Knowledge impacts on safe infant feeding
o Postnatal HIV prevention responsible for 50% of infections
o Weak interventions for counseling women on infant feeding
o Workers would steer the mom to their own preference for what is
right
o Some weren’t given an option
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Ensuring early HIV diagnosis remains challenging
o Transportation
o Limited areas that test infants
o Stigma – afraid that they may have it so don’t want to find out
“Health personnel who know the patient’s status – and offered guidance
about the complex challenges facing HIV-positive women in South Africa –
were thus able to play a critical support role for some women in the study”
(6)
Inadequacy of data and information systems for monitoring and evaluation
Recommends
o More staffing
o Improve productivity, competence, and responsiveness of health care
workers
o Develop accountability systems – performance management
o Ensuring patient’s autonomy
o Provide psychological support
o Counseling on infant feeding
South African women – poverty, gender inequality, social disadvantage,
maybe intimate partner violence or other forms of abuse
Flaws to study
o Bias in interviewers where patients may downplay negative
experience due to fear of poor subsequent treatment even though
consent forms explicitly stated confidentiality
Class Notes
Associate Professor, Global Health, UMB
Dept. Conflict Resolution, Global Governance and Human Security, College of Nursing
& Health Sciences
Social Movement based off access to treatment, “Were going to let people die”
South Africa, very good physical and health infrastructure, decent health personnel
People could only survive and do well with treatment; people needed the meds for quality
of life to be at standard
Letting people die when it is a preventable disease?
Worked with community of researchers and professionals
How to address and manage HIV in the realm of work 25 to 30% infected with HIV
2002, Public Health Rollout started in 2004, people would not go forward for treatment
or testing, afraid of stigma
Concentric layers of sexual behavior, individuals putting themselves at risk, use or don’t
use information, knew they would transmit or get HIV/AIDS
How can we intervene with epidemic using research to help solve the problem
Where is knowledge valued and located?
Rich countries? So much knowledge in other parts of the world that needs to have greater
value
Local knowledge is important, not just textbook knowledge, ASKING THE RIGHT
QUESTIONS
AIMS
1) Role of Research
2) Discuss premature maternal and child mortality linked to HIV-related infections
in SA
3) Consider Implications
Addressing question you care about?
How do we create easier access?
How do we acknowledge what research is important?
We want to improve the Health of individuals in all nations, ultimate goals
Is there a value to research?
Christine, value depending on what you do with it
Palkin, clinical equipoise, research done for real purpose, local population and they need
This is going to have value; this is going to attempt to be used as something of value
Infectious disease is about control, eliminate and eradicate
Notion that there is application at the end of research
Ultimate Goal is about improvement and understanding
Regardless of research results, people use this data for future research, building on
ultimate goal
Turning theory into Practice
Research
- Methodologically Sound
- Scientifically Rigorous
- Ethical
- Culturally acceptable and appropriate
Ethical responsibilities to institution and populations being studied
CONTEXT
Applied Social Science Health Research
- Things that pin prevalence of HIV socially
- We need evidence and quantitative methods to pin problems
- Building an existing evidence base
Need more data for third-world countries; very challenging to collect social health data,
especially when these are places where we need quality health services the most
STORY OF GLOBAL HEALTH
Health Inequity – Certain facilities due to one group and not the other group
Inequalities in specific diseases, burden of disease in your country and location
Inequity - Differences in Health that are Unnecessary, Avoidable, Unfair, and Unjust
Research to understand whether populations understand this definition
Sensitivity of Race in other countries, Especially South Africa
Achieving Health Equity, the highest attainable standard
Statistics are like bikinis, what they do not reveal is as important as what they do
Global Health Trends
How and why people die?
High Income v. Low Income, what you are going to contract so on and so forth
Maternal Mortality, important social indicator, reveals society is able to provide, pregnant
women and children are most vulnerable, and most coveted if they cannot be treated,
healthcare system is very in adequate
AIDS and Complications from pregnancy and child birth are top 2 reasons women die
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Variations in life expectancy
Different causes of deaths in different reasons
Infectious diseases and growing burden of NCDs
Implications of disparity and inequity
- Poor health outcomes correlate with lower social and economic statuses
- Must be CAUSE TO ACT
Incidence in US is 0.6%
Prevalence in southern region, 17.8%, lag in data reports
Would be called public health crisis, and handle
Turning Social Problem into Research Question, deconstructing social construction,
numbers in statistics can motivate you
Sometimes people take too much of a biomedical approach to research, yet no social
interviewing etcetera (yes I typed out the full etc.)
Demographics of woman causing them not to seek care, economics and scarce resources,
need money to make choices, need education to make more money
Even if had the choices, scarce resources in facilities, no tests left, no personnel etc.
Health Personnel are very important in health services, they have the power to treat or
turn you away
Health System is Vehicle for good health – many aspects needed to be fixed and can be
fixed
Additional SDH ensuring good health for these population groups will not result solely
from interventions
What Counts as Evidence?
- Data, follow path
- Evidence based practice
- Shown to be more effective, shown to be safer
Discussion:
In the case of the HIV/AIDS epidemic within South Africa, the issue does not
stem from a lack of scientific knowledge or ability, but instead from not being able to
reach the poorer populations within South Africa. The country itself is home to a stellar
medical system in terms of treating diseases, but HIV/AIDS carries with it both a stigma
and a price tag that many of the poor within South Africa cannot afford. The black
population within South Africa is hit the hardest something we can see in looking at
causes of Maternal and Neonatal deaths. About 35% of all neonatal and maternal deaths
stem from HIV/AIDS (along with other AIDS related diseases like TB). For researchers
looking at this data, they must wonder what the primary barriers to accessing health care
are for these groups? Research reveals that the barriers are on both the individual and
facility/system level.
For individuals the issue begins with lack of access to health care facilities
treating HIV/AIDS. For most, it involves women who are unemployed or making less
than two dollars a day finding a way to get to such health care sites. However, in making
such a trip, these women lose income that they may have been making in the days that
they would be gone. Thus it is generally not feasible for these women to go out and seek
the care they desperately need.
Individually, there is a stigma attached to HIV in that if their test results are
positive, the infected women will fear the actions of their partners. Domestic violence is
prevalent within South Africa and a positive HIV result could lead to such violence
(regardless of whether or not the HIV was passed on from the partner). Further, because
these women are generally economically dependent on their partners, there is a great fear
and loosing that provider, as well as not being able to afford many aspects of
transportation to treatment.
While these women do sometimes look for treatment within facilities, it is
sometimes difficult for them to receive the treatment they need due to understaffing.
While the staff may be able to take care of the women while they are there, they have no
way to check in on the women once they leave the site. Therefore, researchers cannot
even gauge the effectiveness of many of these sites because the data tracking systems are
either inefficient or nonexistent. The women get lost in the system that is trying to
facilitate them.
In researching the flaws within health care systems it is essential that the research
be as ethical as possible under the conditions. As Professor Bromwich noted in her
discussion, There must be a scientific reason for using less than the best treatments, the
host community must be able to benefit from the research and it must cause no harm
within individuals and host communities. In maintaining such research, we can ensure
that the research is value-neutral, but instead used for social change and justice, as
Professor Sprague describes.
It is important to note from a research perspective, that South Africa is not an
extremely underdeveloped nation compared to countries like Haiti. This is significant
because the type of international aid needed greatly differs. Unlike Haiti, which lacks the
type of health care providers, South Africa has in place, S. Africa requires both money
and a creative retooling of its health system. Thus countries like the U.S. are important in
adding new minds to contribute to the conversation of healthcare, they should not fear
“overstepping their boundaries” and potentially creating a sort of neocolonialism that
could stem in Haiti and other underdeveloped countries. In other words, South Africa has
the ability to become self sufficient in that they would be able to solve these problems
internally. However, just as Professor Castro talked about with the need for
implementing new systems within Latin American countries, South Africa is also in need
of such a change. Thus outside aid is important if only to add their voices in helping fix
such systems.