Antenatal HIV Screening Without the Screening Programme
The June 2015 issue of “Screening Matters,” (1) the National Screening Unit’s newsletter, contains an article which euphemistically referred to “changes” to antenatal HIV screening.
The NSU is actually dismantling the screening programme, but antenatal HIV screening will continue as “an integral part of antenatal care.” This means there will be no more “comprehensive monitoring reports and district health boards (DHBs) will no longer receive funding for an HIV co-ordinator.”
As the AWHC pointed out in our May 2015 newsletter (see article below), the antenatal HIV screening programme was only detecting one HIV+ woman each year, and that these women were in high risk groups and should have been offered an HIV screening test as a standard part of their antenatal care.
It is seven years since antenatal HIV screening was rolled out DHB by DHB after a child became infected with HIV through perinatal transmission after the mother who came to New Zealand from a high risk country was not offered an HIV test. At the time a number of women’s groups felt that establishing a formal antenatal HIV screening programme was using a sledge hammer to kill an ant. We also had concerns around the need for women to make an informed decision to have an HIV test.
However, the solution to the problem is not to dismantle the screening programme, remove the monitoring and reporting processes, but continue routine antenatal HIV screening. This is unethical and totally unacceptable for a number of reasons.
Women are not always asked to give their consent to an HIV test which is usually included in the first blood test that is done following confirmation of pregnancy. Past monitoring of HIV screening revealed that around 87% of pregnant women are being tested for HIV, but it is not clear how many of these women are asked to consent to an HIV test or know they have been tested. GPs order the majority of these first blood tests, and some women subsequently learn from their LMC midwife that they have had an HIV test.
Then there is the harm caused when a woman gets a non-negative result and is asked to return to the laboratory and provide another blood sample for a second test. As reported in previous articles on this issue GPs are not always able to answer the woman’s questions about her test results and sometimes get defensive.
The NSU’s Policy and Quality Standards for the Antenatal HIV Screening Programme were updated in June 2010 and stated in the monitoring & evaluation section that:
“Monitoring and evaluation of the Programme will follow the screening pathway and assess process (the organisational aspects of the Programme and policy implementation) and outcomes (health outcomes and process utility). The main aspects of monitoring and evaluation include:
• Screening uptake – by DHB, requester type, age, ethnic group & NZDep score.
• Information provision and informed consent
• Screening results in DHBs: (a) confirmed newly diagnosed HIV positive pregnant women; (b) pregnant women with non-negative results who were not infected.
• Referral management and follow up of women
• Interviews with clinicians and women who had: (a) positive results; (b) required to be retested but were not infected in order to mitigate any adverse effects resulting from the screening process. (1)
So all of the above will be abandoned and women will now be routinely screened without oversight of those doing the screening.
While the NSU claims that “if testing shows a reactive or positive result, the screening laboratory will provide practitioners with guidance on the next steps” this is obviously not always the case. This is very worrying as it is the retesting needed when the first HIV test returns a non-negative result that is causing the most harm.
Being tested without your knowledge or consent is far more common and may contravene the Code of Consumers’ Rights, but very few women choose to complain to the Health and Disability Commissioner. Once the monitoring ceases there will be no information collected on the amount of harm caused by antenatal HIV screening, nor on the numbers of women being screened, and whether there is any benefit to anyone at all.
HIV SCREENING DURING PREGNANCY
Each year the AWHC puts in an Official Information Act request to the National Health Board asking for the numbers and ethnicity of women identified as being HIV+ during pregnancy as a result of the antenatal HIV screening programme.
The resulting letter from this year’s request revealed that in 2014 one woman was found to be HIV+ as a result of antenatal screening.
In both 2013 and 2011 only one woman was identified as being HIV+ as part of antenatal screening. In 2012 two women were diagnosed as HIV+ during pregnancy.
Costs of the screening programme
This raises the issue of the cost of a screening programme that results in the identification of one or two women who may gain a benefit. To provide further context for this result, it has been estimated that an HIV+ woman has a 25% chance of passing the virus to her baby during pregnancy. So it is quite possible that none of the women identified as being HIV+ over the past 4 – 5 years would have given birth to a baby with HIV.
Aside from the millions being spent on the National Antenatal HIV Screening programme, there are also concerns around the adverse impact on some of the women being screened for HIV, as well as the lack of informed consent for an HIV test.
Lack of informed consent
Reports from childbirth educators in the Auckland region reveal that many pregnant women are unaware that they have been tested for HIV, something women’s health groups have been concerned about since the programme was first proposed.
Some women will be screened for HIV and receive what is referred to as a non-negative result. A non-negative result is one in which there was a low level of reactivity to the test, and a subsequent blood test will usually result in a negative HIV test.
The impact of being told that the test for HIV was not negative, and that another blood sample is needed is considerable. Women and their partners are likely to experience a range of extremely distressing emotions and don’t hear the reassuring information that the second test is highly likely to result in a clear result that shows she does not have HIV.
Several months ago a very distressed woman rang the AWHC as result of a non-negative result. She had no idea she had been tested for HIV, and she struggled to understand why the practice nurse would be phoning and telling her she needed to have another HIV test because the first one had produced a non-negative result. She described how she had then tried to get information from her GP who contacted her but was unable to answer any of her questions. He advised that he would ask another GP to ring her. She tried phoning the laboratory who said they could not give her any information. When the second GP phoned her he either would not or could not answer any of her questions and simply told her to go and have another HIV test.
When screening programmes are introduced the most important maxim is the requirement to first do no harm. Careful monitoring is therefore needed to make sure that the benefits of screening far outweigh any possible negative impacts.
Antenatal HIV screening is currently offering a potential benefit to just one woman. It is difficult to justify the resources being spent on it, especially when consent to being screened is not always obtained, only one family potentially benefits from the mother being identified as HIV+, and the screening test causes considerable harm to many other women and their partners.