Saturday, October 25, 2014
The Ugandan HIV and AIDS Prevention and Control Act, 2014, has been rightly criticized for potentially criminalizing certain kinds of HIV transmission and for compelling pregnant women (and their partners) to be tested for HIV.
It is felt that the law will result in people avoiding testing in order that they cannot be accused of attempted or intentional transmission of the virus. However, pregnant women who are not tested are unlikely to receive prevention of mother to transmission treatment or treatment for their own infection.
But there are other flaws in the act, which appears to have been put together in a hurry and without any proof reading. For a start, it seems to be assumed that HIV is almost always transmitted through sexual intercourse, aside from transmission from mother to child.
In Uganda, this is ridiculous. Children with HIV negative mothers were found to be HIV positive in three separate published studies, in the 80s, the 90s and the 2000s. More recently, several men taking part in the Rakai circumcision trial were infected even though they did not have sexual intercourse, and several more were infected despite always using condoms. (There are links to all the studies on the Don't Get Stuck With HIV site.)
The act makes no explicit mention of non-sexual transmission through cosmetic and/or traditional skin-piercing practices, though tattooing and a handful of other practices are mentioned. But there is no mention of circumcision (or genital mutilation), male or female, whether carried out in medical or traditional settings.
The above incidents raise questions about the act's definition of 'informed consent', which requires that people be given "adequate information including risks and benefits of and alternatives to the proposed intervention". Were mothers informed about all of the risks that their infants faced? Were they even made aware of risks to themselves, through unsafe healthcare?
Were the men in the Rakai trial informed about unsafe healthcare risks? Trials should not endanger the health of those taking part, and participants should be adequately informed about the risks. But where people appear to have been infected with HIV as a result of taking part in the trials, this possibility has not even been investigated.
The act does not include transmission as a result of infection control procedures not being followed (or not being implemented). Nor does it include careless transmission, as a result of not following (or implementing) procedures, not training personnel adequately, not providing health facilities with the equipment and supplies needed, etc. The Ugandan state itself has an obligation to prevent and control HIV transmission, according to the act.
Curiously, the act states that there will be no conviction if transmission is through sexual intercourse but protective measures were used (also if the victim knew the accused was infected and accepted the risk). Protective measures probably include condoms, but do they also include antiretroviral treatment? Vast claims are made about reductions in HIV transmission when the infected party is on treatment. Yet people have been convicted of intentional transmission in countries other than Uganda; being in antiretroviral treatment didn't always protect them from conviction.
Part one of section 45 reads: "All statements or information regarding the cure, prevention and control of HIV infection shall be subjected to scientific verification"; part three reads: "A person who makes, causes to be made or publishes any misleading statements or information regarding cure, prevention or control of HIV contrary to this section commits an offence and shall be liable on conviction...".
So it’s not just pregnant mothers and other parties who may fall foul of the HIV Prevention Act. Those who wrote the act may have contravened it themselves in a number of ways. Even those running drug and other health related trials, health practitioners and traditional and cosmetic practitioners may also risk contravening the act.
Friday, October 17, 2014
When Peter Piot, the 'Virus Detective Who Discovered Ebola', went to one of the first identified outbreaks in 1976 in the Democratic Republic of Congo, he reported that "it was clear that the outbreak was closely related to areas served by the local hospital".
Piot says: "The team found that more women than men caught the disease and particularly women between 18 and 30 years old - it turned out that many of the women in this age group were pregnant and many had attended an antenatal clinic at the hospital."
He goes on: "The team then discovered that the women who attended the antenatal clinic all received a routine injection. Each morning, just five syringes would be distributed, the needles would be reused and so the virus was spread between the patients."
What he has to say about people getting ill after attending funerals is repeated in contemporary reports on ebola in West Africa, ad nauseam. But the comments about visits to the hospital, women attending antenatal care and reuse of syringes (and possibly other medical instruments) are no longer mentioned so much.
The CDC does write that ebola "has been characterized by amplification in health care settings and increased risk for health care workers (HCWs), who often do not have access to appropriate personal protective equipment", but they are not as expansive as Piot about exactly what that means on the ground.
There was a whole rash of recent reports about women being more likely to be infected with ebola than men in the current outbreak and a rather narrow set of speculative explanations about why this might be so, one being that women are more likely to be involved in giving care than men.
While women may well more often be the 'caregivers', an article in the New England Journal of Medicine summarizes available data on every reported case. However, it finds that there is very little difference in the numbers of men and women infected, and even the number of men who die from ebola.
There are also far fewer children infected than adults, despite claims that 'women and children' are more likely to be infected than men.
As far as I can see, media speculation into why women may be more likely to be infected than men (because they may have been more likely in some instances) did not question the possibility that women are often more likely to access healthcare, especially when pregnant.
Piot makes this connection during the first investigated ebola epidemic and goes on to connect women's elevated risk with the use of unsterile syringes, not just casual contact in healthcare facilities.
It is to be hoped that clinics are no longer issued with five syringes a day, though clear data about supplies of syringes and needles is hard to come by. But what about other infection control equipment and supplies; especially equipment and supplies in facilities that are experiencing extreme shortages?
What about facilities that are understaffed, where an adequate number of workers may be able to take certain precautions to protect themselves and their patients, but an inadequate number may only be able to think about their own safety, or not even that?
In the case of HIV there are many reasons why a woman might be more likely to be infected through unsafe healthcare. They are expected to attend antenatal care during pregnancy, give birth in a health facility, attend post-natal care, and perhaps several other reasons.
But since western countries, especially the US, have started taking an interest in ebola, they have reinforced efforts to round up people who look in the least bit like they have a fever and sticking them in an already overcrowded health facility, where conditions are appalling.
So if women were more likely to be infected with ebola earlier on in the current epidemic, and in some of the earlier outbreaks in other parts of Africa, perhaps the current approach is influencing the gender balance somewhat. One result possibly being that men are no longer less likely than women to go to a health facility (especially if they are given no option).
Piot says: "The closure of the hospital, the use of quarantine and making sure the community had all the necessary information eventually brought an end to the epidemic - but nearly 300 people died." Most people were quarantined in their own homes, not in an overcrowded and filthy ward.
How things have changed. Far from trying to persuade people to stay in their homes and supporting family members to look after them, US soldiers are helping to send people to what could be the very epicenter of the epidemic.
There are now far more confirmed and suspected ebola cases than there is hospital capacity to care for them. So a strategy that aims to strengthen and make hospitals safer, in combination with strengthening communities to care for people at home might now be the only option left.
Wednesday, October 15, 2014
My last post cited an article from the English Guardian claiming that a two year old boy had been bitten by a fruit bat and thus became 'patient zero' for the current ebola epidemic in West Africa. Since then, the newspaper has rewritten the paragraph to read:
"In December last year, near the village of Meliandou in southern Guinea, two-year-old Emile may have come into contact with one of the fruit bats that fly through west Africa’s skies, often gathering at dusk to roost in trees."
'May have come into contact with' is a lot better than what Clar Ni Chonghaile wrote previously, but the article still confidently claims that this two year old boy is 'patient zero'. An article in the New England Journal of Medicine shows that this confidence is mislpaced:
"Potential reservoirs of [ebola], fruit bats [...] are present in large parts of West Africa. Therefore, it is possible that [ebola] has circulated undetected in this region for some time. The emergence of the virus in Guinea highlights the risk of [ebola] outbreaks in the whole West African subregion."
An infectious disease doctor at CDC goes further: [these] two kids were likely early cases of the outbreak but not the first cases.
My criticism of Ni Chonghaile is not that she is wrong about bats or patient zero, but that she infers some kind of certainty where there are at best hypotheses, and at worst pure speculation. I accept fully that epidemiology is often like that, therefore I object to the use of 'fruit bats' and 'funeral practices' as explanations when these are probably a very small part of the story.
Although it is not my purpose to check 'facts' in the article, I would also say that timing is very important; it matters a great deal when the first suspected case was reported, whether they survived, when the next case was reported, etc. So it is worth pointing out that Ni Chonghaile also gets the dates wrong: the symptoms started for the first suspected case on December 2, not December 26; he died four days later.
But the most important thing that Ni Chonghaile and others writing on the subject fail to discuss is the possibility that unsafe healthcare is likely to have played a considerable role in transmitting ebola. Infection from healthcare worker to patient, as well as from patient to healthcare worker, are very likely, so is infection from patient to patient. What about reused syringes, needles and other equipment? Even reused gloves?
Naturally, the Guardian and other media outlets decry conditions in health facilities in African countries in the abstract. But concrete evidence that unsafe healthcare may have been responsible for transmitting HIV, hepatitis, TB and other diseases in the past, and may still be responsible, doesn't seem to impinge very much on their ostensibly enlightened consciousness.
Eliminating contact with bats, funeral rites and a handful of other exotic phenomena will not, have not, stopped the epidemic. Sure, a bat (or some other animal) may have started the current outbreak, but how has it been sustained since then (whenever that may have happened)? This is not at all about blame, but about tracing how each infection occurred and eliminating that mode of transmission.
These trivial 'certainties' deflect attention from a host of uncertainties, but also from the unspoken suspicion that the current approach itself is not working, that protocols may be incomplete, that the proposed solution may be part of the problem. It should not be beyond a journalist to question things that seem to be relevant, but are currently being ignored. Or perhaps I expect too much from them?
Monday, October 13, 2014
The English Guardian reports: "In December last year, near the village of Meliandou in southern Guinea, two-year-old Emile was bitten by one of the fruit bats that fly through west Africa’s skies, often gathering at dusk to roost in trees." In fact, as the article goes on to make (partially) clear, this is just one hypothesis out of many.
The 'first' person infected in the current outbreak may or may not have come into direct contact with a bat, or some other animal; or the outbreak may have occurred in a health facility, rather than in 'the bush'; the term 'Patient Zero' is suitably dramatic for articles about disasters set in exotic locations, but has distracted attention from how people continue to be infected with ebola.
It's comforting to think that African two year olds are a lot less likely to be bitten by bats now that the scientists, medics and disaster workers have moved in; perhaps African parents will even give up or modify their unsafe bat-hunting habits and take people to hospital if they are thought to be sick, and cease to take vaguely defined risks of being infected at funerals.
Meanwhile, when a healthcare worker in Texas is infected with ebola, being one of the many people who nursed ebola victim Thomas Duncan, a 'breach of protocol' is immediately suspected. Another hypothesis, of course (although it leaves out the possibility that the protocol has failed to take into account some additional mode of transmission).
Compare this to an earlier blog post: when 86 people who have no identifiable risks for the virus are infected with hepatitis C in the US, expensive investigations are carried out into possible breaches of infection control processes in the health facilities that the victims attended.
Yet, when millions of Africans who have no identifiable risks for the virus are infected with HIV, an entire industry develops around the prejudiced view that Africans engage in huge amounts of unsafe sex. No investigations are carried out into conditions in health facilities, although various reports show that infection control processes are seriously lacking.
Of course, there was no ebola protocol in West Africa back in December of last year. But all the more reason, then, to investigate health facilities. What kind of infection control processes were in place then, and are now? Subsequent findings suggest that there are severe shortages in trained personnel, supplies and beds, etc, similar to those noted in other African countries.
Rational explanations in western countries, but metaphors and non-rational backstories in Africa. Spacesuits, because it is an exotic virus from a different planet, brave westerners, but only poor and uneducated Africans.
It just seems a bit suspicious that ebola (and HIV and other diseases) are spread through the ignorance and carelessness of victims in African countries, but through a 'breach of protocol' in the US. Health facilities are such dangerous places in African countries that it is surprising authorities insisted on rounding up those suspected of being infected with ebola and marching them off to a clinic in the first place.
But that approach may now be challenged if this article in the New York Times is at all correct. It says that officials have admitted defeat and that they are going to "help families tend to patients at home". About time too. This could be a major turning point if it is taken to its logical conclusion (if logic if given a role, for a change).
As David Gisselquist has pointed out on this site, people are not being asked about possible infection through through healthcare procedures they may have received in the recent past. Gisselquist has been arguing that people should be warned about healthcare risks, treated with respect and fully supported if they decide to care for ebola patients at home.
Long before the current ebola outbreak occurred it was already common practice for healthcare professionals to say as little as possible about lack of safety in facilities, resulting in HIV, hepatitis, TB and other diseases being transmitted through various procedures, such as injections with reused syringes and needles, unsterilized equipment, reused gloves and other materials. This needs to change, as the ebola outbreak shows (and as the hepatitis and HIV epidemics have been demonstrating for several decades).
In the US there are possible insurance claims, professional negligence inquiries, outbreak investigations, protocols to be rewritten, with some of these phenomena possibly being mentioned in the mainstream media from time to time. Oh, and perhaps some much loved mongrels to be euthanized.
But in Africa the media will continue with its customary approach: treat the people as an exotic, primitive species, to be pitied for their funeral practices and 'bush meat' hunting, their reluctance to go to a hospital (implied to reflect a suspicion of modern or 'western' things or people), etc. There will be lots more 'ebola orphans', two year old Emiles, ministering angels in spacesuits and the like.
It's as if this completely unforseeable 'perfect storm' (a metaphor also favored by the media when writing about HIV) took away Patient Zero, and the rest of the outbreak was down to a combination of other ineluctable processes. But, whereas a perfect storm is a rare combination of factors, unsafe healthcare has been around for decades.
The current ebola outbreak is a symptom of decades of unsafe healthcare; it is nothing like a 'perfect storm'. Two year old Emile, ebola's putative patient zero, is as far from being the index case as Gaëtan Dugas was for the HIV epidemic. Stopping ebola requires an admission that unsafe healthcare spreads disease and allows isolated outbreaks to become pandemics. Apologies if the truth is far too prosaic to sell newspapers.
Friday, October 10, 2014
When I was writing yesterday's blog post I didn't realize that the Amnesty International report I referred to had already been published. It's called 'Struggle for Maternal Health: Barriers to Antenatal Care in South Africa'. It is quite extraordinary that such a lengthy report about maternal health can fail to mention safety, unsafe healthcare, healthcare transmitted infections and the like.
But the report puts the cards on the table on page 21: "Heterosexual sexual intercourse is the main cause of HIV transmission in South Africa." The South African 'National Strategic Plan' is cited in support of this contention, and that document doesn't really support the claim at all, although it's clear that it comes from the usual documents from the usual normative agencies.
Normative agencies such as UNAIDS, WHO and others make guesstimates of the proportion of HIV transmission that can be attributed to male to male sex, intravenous drug use, commercial sex work and various heterosexual 'groups' (who are never very clearly defined). The minute figure that remains, 1-2%, is attributed to healthcare transmission of HIV.
But as yesterday's blog (and other data on the Don't Get Stuck With HIV site and blog) show, there are numerous types of healthcare transmission of HIV, including antenatal care, invasive forms of contraception, blood tests, donations and transfusions, child delivery, injections, surgery and many others.
Amnesty and others go on about stigma, the need for privacy, lack of information and poor public transport for pregnant women. But the stigma is not very surprising: if a HIV negative man constantly hears that the virus is primarily transmitted through heterosexual sex and that his wife is HIV positive, or that his child is, he is not being irrational in believing that his wife has been having sex with someone else.
Rather, he is misinformed. Misinformed by the likes of UNAIDS, WHO and, it seems, Amnesty International. Neither the woman nor the man are told that HIV may have been transmitted through some non-sexual route, perhaps even through unsafe healthcare. This is an especially important mode of transmission in the case of HIV positive infants whose mothers are negative, or HIV positive mothers whose partners are negative.
The closest Amnesty International's report gets to the issue of unsafe healthcare is where they recommend "[paying] particular attention to the need to develop, resource and implement programmes to address the underlying determinants of health that promote safe pregnancies and deliveries." [my italics] But there is little or nothing in the body of the report indicating that unsafe healthcare may be an underlying determinant in much of the morbidity and mortality among women, infants and children.
The report does talk to healthcare users and providers and there are some useful findings. People are not given clear, complete or even accurate information a lot of the time. Healthcare workers often lie or withhold vital information and they may even be ignorant of certain matters themselves.
Antenatal care provision may be lacking in South Africa, but the country has one of the highest figures for women giving birth in a health facility among all the high HIV prevalence African countries. It also has one of the highest figures for deliveries being attended by a skilled health provider.
In other words, high HIV prevalence countries tend to be those with better antenatal care indicators, rather than worse. Amnesty also reports on transport, but transport infrastructure is more developed in SA and other high HIV prevalence countries than it is in East and central Africa, where HIV prevalence is also lower.
Amnesty International did not seem to question these phenomena, despite the fact that they have noticed that HIV prevalence is high in SA, especially in the areas they did their research (KwaZulu Natal and Mpumalanga), also that maternal morbidity and mortality are much higher among HIV positive than HIV negative women.
Had they questioned the often cited but never demonstrated reflex 'heterosexual intercourse is the main cause of HIV transmission', they might also have tried to find out if health professionals may be hiding behind patient confidentiality and privacy and deliberately avoiding testing partners of HIV positive women because they wouldn't want anyone to suspect that unsafe healthcare can be responsible for transmitting HIV.
These both look like conflicts of interest for healthcare providers, between informing HIV positive people how they or those they care for may have been infected and avoiding the suspicion that unsafe healthcare can result in transmission of HIV, hepatitis, bacterial infections and other pathogens (including TB, ebola and anything else going around in hospitals).
South African's constitution holds that healthcare should be of 'good quality' and that citizens have the right to the highest attainable standard of health. Unless health facilities are safe places, increasing access to healthcare may be counterproductive and expose people to avoidable illness and injury. Unless healthcare personnel are enabled to provide safe healthcare, training and retraining them may be similarly counterproductive.
A well funded and experienced human rights NGO such as Amnesty International must go beyond the corporate mythmaking of normative agencies, the views of people constantly bombarded with misinformation and prejudice about HIV transmission, and health professionals who are either ignorant about healthcare transmission or who wish to protect their profession from suspicion of infecting patients.
Thursday, October 9, 2014
Research in Mozambique, Swaziland and Kenya has shown that a substantial proportion of HIV positive infants have HIV negative mothers. These infants are likely to have been infected through unsafe healthcare, perhaps reused syringes, needles or other equipment, lack of adherence to infection control procedures, etc.
Amnesty International has launched a campaign to gather information from the public about maternal deaths in Mpumalanga, South Africa. In particular, they are interested in HIV testing, informed consent and whether consent is given voluntarily.
But what kind of 'information' are Amnesty collecting? The South African Medical Association's Ethical and Human Rights Guidelines on HIV and AIDS makes no mention of non-sexual transmission of HIV whatsoever. Is information about the likely source of an infant's infection not considered to be a vital part of giving informed consent?
Is information about how a mother (or anyone else) may have been infected with HIV not also vital? I would suggest that this information needs to be a standard element in pre- and post-test counselling for everyone, but particularly where the spouse is not HIV positive or where a HIV positive person has no identifiable sexual risks, is not an intravenous drug user, etc.
The Health Professions Council of South Africa's (HPCSA) Guidelines for Good Practice in Medicine, Dentistry and the Medical Sciences has this to say:
"The risk of transmission of HIV infection in the health care area from patient to patient, patient to health care worker, and from health care worker to patient through inoculation of infected blood or other body fluids has been shown scientifically to be very small. Fears, which are not always based on reality, have thus tended to exaggerate the risks out of all proportion."
This paragraph is not backed up by any citations and is expressed in language that is out of place in a set of guidelines for health professions; the word 'scientifically' is especially incongruous. What does it matter how small a risk of healthcare transmission of HIV is when an infant is HIV positive and the mother and their partner are not? Adults, also, could face healthcare and other non-sexual risks, but are these risks assessed by practitioners who have been told that they are 'very small'.
The Mozambique research further shows that some HIV positive mothers were likely to have been infected by their HIV positive infants, that HIV negative mothers with HIV positive infants have not been told how their infants may have been infected, that HIV negative mothers have not been told that they can be infected by their HIV positive infants, that some mothers have been allowed to believe that their infant's HIV positive status is their fault and that some healthcare workers are unable to answer, or even question, these phenomena.
The HPCSA General Ethical Guidelines for the Health Care Professions lists as one of the duties to patients: "Make sure that their personal beliefs do not prejudice their patients’ health care." Personal beliefs about how the patient may have been infected with HIV, even beliefs based on the HSPCA Guidelines, should not preclude an unprejudiced assessment of both sexual and non-sexual exposure to HIV.
Amnesty International would do well to consider the possible conflict between the interests of the healthcare professional and the interests of the patient in regard to providing those being tested for HIV with correct and complete information about how the virus is transmitted. When they have finished in South Africa, they may like to extend their investigation to other African countries.