Mandatory HIV Testing for Infants in the UK, Research Paper Example

Introduction

While there is no question that treatments for HIV and AIDS have advanced significantly in the decades since the HIV virus and its attendant medical complications were first identified, there is also no question that the best defense against the spread of AIDs is the prevention of HIV transmission. Rates of HIV and AIDS are at their highest in the developing world and in nations with low income standards, as access to medical care to and prevention information are scarcest in these regions. In the Western world, rates of HIV infection and AIDS are significantly lower; this does not mean, however, that the problems related to infection and transmission have been eliminated.

The United States-based aids.gov website provides an overview of HIV/AIDS-related statistics and information as a means of understanding the global impact of the AIDS epidemic. The latest available information presented at aids.gov indicate that roughly 33 million people are living with HIV/AIDs worldwide; fully 97% of these people live in the developing world. Regions such as sub-Saharan Africa, Central Asia, and Eastern Europe have the highest rates of HIV/AIDS; Western Europe, the United States and Canada have some of the lowest rates. A 2010 report issued jointly by the World Health Organization (WHO) and the United Nations Children’s Fund (UNICEF) addressed the global AIDs epidemic by offering policy suggestions and guidelines for HIV testing of pregnant women, mothers, and infants as a means of slowing transmission rates of HIV in vulnerable populations. According to the report, “infants and children bear a considerable part of the overall burden of HIV” (unicef.org). In 2008 alone approximately 2.7 million people acquired HIV; 430,000 were infants and children (unicef.org).

The most common route of HIV infection in infants and children is mother-to-child transmission (MTC). A very small percentage of cases of MTCT occur during actual pregnancy via transpacental infection; estimates place the number at 1.5 – 2% (patient.co.uk). The vast majority of cases of MTCT take place during childbirth via maternofetal blood transmission or after childbirth during breastfeeding (patient.co.uk). This means that, given appropriate and effective medical care before and after childbirth, the risk of MTCT can be significantly lowered. For infants that are born with HIV, appropriate treatments with antiretroviral therapies and other medications can stave off HIV infection; the majority of HIV-infected infants who are left untreated will die within their first two years (aidsmap.com).

With these and other considerations in mind, HIV testing is clearly the fundamental component of any anti-HIV/AIDS strategy. Routine HIV testing of pregnant mothers, infants, and children offers the best hope of lessening the rate of MTCT and of targeting those affected for appropriate treatments. Many nations have adopted protocols that make such routine testing a part of typical pre- and postnatal care. Adhering to such protocols can be challenging in the developing world where they are most needed, and the widespread availability and access of testing remains elusive in many parts of the world (Armstrong, 2008). In the UK, where HIV/AIDs rates are comparatively low, the issue of MTCT still poses risks and challenges for patients and health-care providers alike. Significant consideration has been given to the issue of HIV testing for pregnant mothers and for infants and children, up to and including the advocacy of mandatory testing for members of these populations (Armstrong). The following paper offers a discussion about some of the most significant factors related to the issue of HIV testing for women, infants, and children in the UK, with particular emphasis on the possibility of mandating such testing for infants and children.

Mothers, Infants and Children with HIV/AIDS in the UK

The most significant risk factor for MTCT of HIV is undiagnosed infection in the mother (bhiva.org). According to recent statistics, 1 in 440 women giving birth in the UK were infected with HIV, and the rates of infection among women grew by 66% between 1997 and 2006 (pateient.co.uk). The rates of HIV infection among women have grown both in the UK urban centers and in rural areas, with the lowest rates of growth seen in London and the highest rates of growth seen in other urban centers and outside of cities. While it may be difficult to say with certainty what factors account for such variances, it would seem likely that those living in urban centers have greater and easier access both to information about prevention of HIV infection and to adequate medical care and testing regimens. The UK has made a concerted effort to offer appropriate HIV testing to pregnant mothers and their offspring, making such testing routine in most cases. Despite the establishment of such routine protocols, MTCT and other forms of transmission can still affect children in the UK; as such, it is important to offer routine checkups and testing where the possibility of post-natal transmission exists, and to monitor for signs of symptomatic development in children.

While there are a range of symptomatic presentations and conditions associated with HIV, health care providers are instructed to watch for several signs that are potentially indicative of HIV infection in children. These signs include recurring bacterial infections such as meningitis, pneumonia, and septiceamia as well as less-common infections Mycobacterium complex. Other signs to watch for include developmental delays associated with AIDS-related encephalopathy or CNS damage associated with systemic opportunistic infections. These and other symptoms and signs may be indicative of HIV/AIDS in children, when present, appropriate testing and treatment should be offered.

HIV Testing in the UK

Despite the advances made in the treatment of HIV/AIDS, a significant number of people in the UK succumb to AIDs because they delayed testing and treatment. Worse still, many of these deaths occurred in people who had been seen by a physician in the recent past yet remained untested and undiagnosed (patient.co.uk). HIV testing is not mandatory for anyone living in the UK, though members of vulnerable populations are strongly encouraged to undergo testing on a regular basis. The national health system in the UK makes such testing significantly more practical and feasible than it is in many parts of the world, a factor that certainly contributes to the relatively low rate of HIV infection among members of the UK population. Further strengthening the testing regime in the UK has been the adoption of the “opt out” approach; in this regime, HIV testing is offered to all individuals in specified medical settings as part of routine preventive medical care, with those who do not wish to be tested having the option to decline the test (bhiva.org).

This current approach was not always the case in the UK, however; prior to 2001 HIV testing was typically only offered in genitourinary medicine (GUM) clinics, and even then was generally offered as an opt-in test. The number of individuals opting to take the test was relatively low, and the statistical and health-related information and outcomes deemed insufficient. Beginning in 2002, HIV testing in GUM clinics was changed to the so-called universal (opt-out) standard; as a result, the number of individuals choosing to take the test rose dramatically, though a not-insignificant number of individuals chose –and still choose- not to take the test (bhiva.org). There are a variety of reasons and factors that lead some individuals to opt out of the test, including fear of the social or cultural implications of HIV infection and other factors. It is possible, and perhaps even likely, that making testing universally available and routine has helped to de-stigmatize HIV infection, leading to changes in the social perceptions related to testing and management of HIV/AIDs.

At roughly the same time that universal testing became standard in GUM clinics, studies conducted in prenatal and antenatal care settings determined that testing for pregnant mothers and infants was accepted and conducted in haphazard and inconsistent numbers. According to a 2010 report from the British HIV Association, HIV testing in this time period was “highly variable and dependent upon health care worker factors rather than clinical need” (bhiva.org). A randomized controlled study conducted to assess HIV testing compliance determined that using a risk-assessment method to determine whether individuals should be tested had the effect of driving down compliance, while the opt-in approach served to increase compliance (bhiva.org). Such studies, along with the practical results demonstrated in clinical settings, prompted a reform of testing protocols in the UK, making HIV testing nearly universal in many clinical settings.

Antenatal HIV Testing and Treatment in the UK

Universal HIV testing is now offered in a variety of clinical settings in the UK, including GUM clinics, drug dependency programmes, pregnancy-termination services, and prenatal and antenatal care clinics. Expectant mothers are offered HIV testing on a universal basis, and those who test positive for HIV are directed towards clinics offering specialized care for HIV-infected mothers to minimize the risk of MTCT. Infants born to mothers with HIV are offered testing; such tests should ideally be conducted as quickly as possible after birth.

Testing of newborns requires a specialized approach, as the standard ELISA tests are not considered to be reliable for the first 18 months. During pregnancy it is possible for HIV antibodies to be transmitted placentally from mother to fetus; such antibodies may be transmitted even when the actual HIV virus is not. Moreover, these antibodies may remain present in the systems of infants for up to 18 months. Typical HIV tests for older children and adults look for the presence of such antibodies, while their presence in infants may not be indicative of infection. With these factors in mind, the appropriate testing of infants is the polymerase chain reaction (PCR) test which looks for the presence of viral DNA (bhiva.org). These tests are generally offered to potentially-infected infants in the first several hours after birth and again at six weeks and three months of age. Negative test results at all three stages are generally considered evidentiary that HIV infection has not occurred (aidsmap.com).

Infants that are diagnosed with HIV infection are offered treatments based on HIV infection and on possible concurrent and opportunistic infections. In the UK the most common form of treatment for pregnant mothers with HIV and for infected newborns is highly active antiretroviral therapy (HAART). In the event that a pregnant mother tests positive for HIV a number of factors must be taken into consideration. The risk of fetotoxicity resulting from HAART has prompted some clinicians to delay treatment until the late stages of pregnancy. Concerns about fetotoxicity must be weighed against the potential risk for placental transmission, which rises slightly in accordance with higher viral loads in mothers. Additional concerns about treatment include the possible presentation of multi-drug-resistant HIV and the desire to prevent MTCT during childbirth. In order to minimize the potential for MTCT during birth, mothers who test positive for HIV are generally advised to deliver via cesarean section in the absence of complicating factors that would make such a delivery inadvisable.

As noted previously, it is exceedingly rare for HIV to be passed via the placenta; the two primary modes of MTCT are through blood contact during childbirth and through breast milk during breastfeeding (bhiva.org). Mothers who are HIV positive are advised against breastfeeding; mothers for whom the cost of baby formula would present an economic challenge, are offered subsidized formula and other possible benefits (bhiva.org). It is impossible to demand that HIV-positive mothers do not breastfeed, though health care workers are charged with strongly advising against it (bhiva.org). Infants and children of HIV-positive mothers who breastfeed are generally subjected to more frequent HIV testing; in some cases prophylactic medications may be administered to help lower the risk of MTCT. These testing and treatment protocols are, of course, just general guidelines; each individual case must be assessed and responded to according to the specific needs of the mothers and children who have, or are at risk of acquiring, HIV or any potential concurrent infections and other related medical issues.

HIV Testing and the Issue of Informed Consent

The startling improvement in the rates at which individuals in the UK have been tested for HIV when the universal/opt-in approach was adopted clearly demonstrate that policy can affect how people respond to offers to test for HIV. Further, there are a variety of factors that impact –and often complicate- the issue of consent to testing, including privacy concerns, social and cultural factors, the availability of appropriate information, and easy access to testing and treatment (Armstrong). It is demonstrably clear that by adopting the opt-in approach and making HIV testing a standard clinical protocol (as opposed to a service proffered only to those who are assessed as high-risk individuals) the stigma associated with HIV and HIV testing is notably lessened. The adoption of the opt-in approach was not the only factor that prompted a shift in public perceptions about HIV and HIV testing, but it does seem likely that the move towards universal testing helped to underpin those changes.

Despite the changes in public perception about HIV/AIDs and the individual and societal benefits and advantages of HIV testing, there are still a significant number of people who have, or are at risk for acquiring HIV who go untested for one reason or another. In the UK, the generally-accepted guidelines related to HIV testing require that individuals provide informed consent to be tested; even under the opt-in testing regime, acquiring consent is necessary before an individual can be subjected to HIV testing (patient.co.uk). Such consent is more easily obtained in the opt-in approach, as individuals are offered appropriate information before being given HIV tests (or any other medical tests, procedures, or treatments). Globally, the opt-in approach has been adopted in many regions; the country of Botswana, for example, where the issue of AIDS orphans presents significant social and economic challenges, infants and children are universally tested for HIV unless a parent or legal guardian specifically refuses to allow an individual infant or child to be tested (unicef.org).

In the state of New York in the United States, HIV testing for newborns is now mandatory (aidsmap.com); such mandatory testing is not the norm in the developed world, but legislators in New York have decided that the potential health risks for individual infants, coupled with the social and economic costs associated with HIV/AIDS, outweigh the considerations of parents or guardians who might otherwise choose not to have their infants or children tested. In the earlier example of Botswana, HIV testing for newborns is not technically mandatory, but in practical terms it is so strongly encouraged that the current system amounts to de facto mandatory testing (unicef.org). In the UK, HIV testing for mothers, infants and children is not mandatory, but is strongly encouraged. When weighing the question of whether HIV testing for the most vulnerable members of a given population –such as infants born to HIV-infected mothers- a number of economic, social, ethical, and practical factors must be taken into consideration.

In their joint report on HIV testing policy, UNICEF and WHO refer to the United Nations’ Convention on the Rights of the Child when addressing the matter of HIV testing for infants and children. In this framework, all children have the right to “survival, life and development” and “the right to health” (unicef.org). Given the fact that, left untreated, HIV infection in newborns is a virtual death sentence, it could be –and has been-argued by some that mandatory HIV testing is an appropriate means by which to ensure that the rights of infants and children are adequately met. Despite the strong arguments made in favor of mandatory HIV testing for infants and children, supporters and opponents both acknowledge that establishing mandatory testing is an arena of policy-making that is fraught with controversy and complications.

Shuklenk and Kleinsmidt (2007) argue in favor of mandatory HIV testing for pregnant women and their offspring in regions where HIV/AIDS is prevalent. The purpose of mandating such testing for pregnant women is twofold: first, it identifies HIV-infected women before delivery, which allows potential treatments and prophylactic measures against prenatal transmission to be offered; second, it potentially obviates issues related to testing of newborns in regions where PCR testing is too costly or is simply not available. One possible alternative to standard PCR testing is the blood-drop test, wherein a drop of blood from a newborn is dripped onto a strip of test paper and allowed to dry (uniecf.org). The collected test strips are then sent to laboratory facilities for subsequent PCR testing; such an approach to testing eliminates the need for refrigeration or other costly methods of storing samples, and allows PCR testing to be offered to populations where laboratories equipped for PCR testing do not exist. Despite the lessening of barriers to PCR testing in this scenario, however, the tests are still relatively expensive; in such circumstances, identifying HIV-infected pregnant women before delivery may make it possible to avoid MTCT rather than simply testing infants for HIV after delivery.

The policy proposals offered by Shuklenk and Kleinsmidt take into account a number of potential issues related to mandatory testing. The authors describe how the “focus on obstetric care of pregnant women in high-prevalence regions” of HIV/AIDS is often made more difficult by need to acquire consent for testing. A study conducted in Johannesburg, South Africa, demonstrated that “the HIV seroprevalence rate among women who refused routine antenatal HIV screening was a staggering 44%” (Shuklenk and Kleinsmidt). Women in such this and other regions may refuse testing for a number of reasons, including the fear of being shunned or even banished by the other members of their community. Under such circumstances, mandatory testing would have to be done in a context that considered these potential complicating factors; the authors suggest that pregnant women who are subjected to mandatory HIV testing must also be offered the option of choosing to abort pregnancies as an alternative to mandated testing. In addition, women testing positive after being given a mandatory HIV test should be offered appropriate treatments for their own infection and for lessening the potential of MTCT.

There is no question that the impact of the AIDs epidemic in parts of the developing world is severe. The economic and social toll HIV/AIDS has taken in some parts of the world has left tens of thousands of children orphaned, and many hundreds of thousands of other children and infected or sick (Armstrong). In such conditions, it has been argued, the potential problems posed by mandating HIV testing for pregnant women or their offspring are more than offset by the advantages of identifying and treating those who are infected (Armstrong). Despite the strength of such arguments, however, mandatory testing is exceedingly rare, though the movement towards opt-out testing has resulted in a growing rate of compliance both in the developing and the developed worlds.

It is clearly demonstrated by statistical evidence that the adoption of universal/opt-out in the UK has had several ameliorative effects: first, it has led to a significant improvement in the rate at which individuals agree to be tested for HIV; second, it has seemingly helped to lessen the stigma associated both with testing and with HIV/AIDS infection; third, it has underpinned significant improvements in the rates at which HIV-positive pregnant mothers and their offspring are identified and treated. Given such improvements, it might at first glance be argued that mandatory testing for HIV of pregnant mothers and newborns would only lead to greater improvements. Such an argument ignores a number of facts, however, first among them being that it would entirely upend the rights of individuals to give informed consent for this or any other form of testing. It may also lead to the possibility that some mothers would simply avoid medical care, a scenario in which the potential benefits of opt-out testing would be lost in those individuals, and in which other necessary or important aspects of prenatal and antenatal care were not given. Finally, it ignores the fact that improvements supported by opt-out testing would be undermined, and would pose ethical and moral challenges that, under the current universal approach, are relatively rare and statistically insignificant. It is clear that the opt-out approach has shifted the momentum in the battle against HIV/AIDS; as such, it is recommended that the UK continues to adhere to this policy approach and does not adopt am policy of mandatory HIV testing for any members of the population.

References

Aidsmap.com (n.d.). HIV & AIDS Information :: HIV & children – HIV testing for babies and children. Retrieved from http://www.aidsmap.com/HIV-testing-for-babies-and-children/page/1060202/

Armstrong, R. (2008). Mandatory HIV testing in pregnancy: is there ever a time? Developing World Bioethics, 8(1), 1-10.

British HIV Association (2008, September). UK National Guidelines for HIV Testing. Retrieved from http://www.bhiva.org/documents/Guidelines/Testing/GlinesHIVTest08.pdf

Congenital HIV and Childhood AIDS | Doctor | Patient.co.uk. (n.d.). Retrieved from http://www.patient.co.uk/doctor/Congenital-HIV-Infection-and-its-Prevention.htm

Schuklenk, U., & Kleinsmidt, A. (2007). Rethinking Mandatory HIV Testing During Pregnancy in Areas With High HIV Prevalence Rates: Ethical and Policy Issues. Am J Public Health,97(7), 1179–1183.

World Health Organization and UNICEF (n.d.).http://www.unicef.org/aids/files/WHO_UNICEF_Testing_Policy_web.pdf. Retrieved from http://www.unicef.org/aids/files/WHO_UNICEF_Testing_Policy_web.pdf