No Jab No Pay Essay: Challenges With Informed Consent And Social Inequity.

Linking Eligibility for Welfare to Vaccination Status

Question:

Discuss About The Linking Status And Eligibility For Welfare?

The Australian Government’s No Jab No Pay policy that applies at the national level is associated with full vaccination of children with the use of vaccines that have been listed on the National Immunization Program or NIP[1]. According to the policy, parents will be eligible to receive Family tax benefit Part A end of year supplement, child care rebate and child

care benefit if their children who are below 20 years of age have been assessed to be fully immunized. No parent can object to the vaccinations and are mandatory for all in order to obtain the benefits[2].    The aim of such a policy was to reinforce the importance associated with the benefits of immunizations. Moreover, it was also associated with increasing and promoting public health, particularly the health of the children[3]. These benefits will be provided to only the citizens of Australia or those who hold a permanent visa, temporary visas or special category related visas. Moreover, the benefits will also be applicable for offshore humanitarians holding a permanent visa[4]. The immunization status of the children is determined by the assessment of the Australian Childhood Immunization Register or ACIR, which is connected with the Medicare services of the country[5]. This law was necessary due to the cases of child deaths below the age of 5 years resulting from various vaccine preventable diseases. Some of the vaccine preventable disease affecting the Australian children, thereby resulting in their deaths are influenza, invasive meningococcal infection, Pertusis, Pneumococcal septicaemia, meningititis and pneumonia[6]. Some regions of the Australian subcontinent like Woonona located in New South Wales and Broome located in Western Australia showed immunization rates of 99.5 and 99.2%, respectively. However, other regions like the central business district of Sydney and Burnwood located in New South Wales showed immunization rates of only 70.5 and 72.8%, respectively. These immunization rates were observed in the year 2015-2016[7].

Thus, the research question is whether No Jab No Pay policy follows the rules of informed consent and the associated challenges. The question stems from the fact that although this policy has increased the rate of immunization in the Australian sub-continent but still there are issues regarding the migrant or refugee populations and also the fact that it violates the right of informed consent[8]. Thus, this report provides a literature review and also provides a discussion of the advantages and disadvantages of the No Jab No Pay policy in order to come to a conclusion and also to address the research question.

Vaccine Preventable Diseases in Australia

This section consists of the review of the literatures dealing with immunization and the No Jab No Pay policy[9].  The most important problem associated with this legislation is the challenges associated with informed consent. Informed consent is associated with legal and ethical requirements involving human participants. Informed consent is associated with a statement of the procedure, duration, description of any risks associated with the procedure, description of benefits associated, information of remuneration or compensation if required and voluntary participation, which can even result in withdrawal from the practice without any subsequent penalties on the participants[10].  Some of the challenges of informed consent is associated with the presence of language barriers. Misunderstandings can result from inadequate or incorrect language translations. Individuals give consent without being fully aware of the procedure, which can result in severe consequences and even results in withdrawal. Other challenges of informed consent involve religious influences, false expectations, patient perceptions, research involving children, vulnerable groups of people, among others.  Religious beliefs also play an important role in deciding whether to participate in the trial or not. Many times the methodology associated with the procedure results in conflicts due to the rules set by religion. False expectations arise due to previous historical evidences that have shown the inefficiencies of a particular program, which in turn results in patient refusal. Patient perceptions with respect to side effects or the occurrence of adverse events prevents patients from participating in research trials or vaccination programs. With respect to involvement of children, permissions are required to be obtained from parents or guardians. Vulnerable groups and people involve individuals who are unable to protect their interests and in turn results in difficulties in obtaining informed consent. These could include individuals like those with learning disabilities or individuals like refugees or migrants[11].

One of the most important vaccine preventable diseases that have been found to affect the Australian children is measles. Surveillance data from the Public Health Event Surveillance System revealed that within 2005-2014, 237 cases of measles had been reported in the state of Victoria. Among the affected children mostly were found to be unvaccinated. Records revealed that there was no details related to immunization or vaccination histories of the students. Due to the lack of immunization, the Australian Government with the aim to promote vaccination, provided incentive payments to the providers of immunization in order to identify and immunize the children who were overdue for vaccinations. Moreover, the No Jab No Pay policy brought about by the Australian Government will not provide any federal government assistance benefits or payments to the parents, whose children are unvaccinated or under vaccinated[12]. With the help of this policy the vaccination rates had increased in Australia. This policy accepts exemptions from vaccination only on medical grounds but not on religious or conscientious grounds[13].

Challenges with Informed Consent: Language Barriers, Religious Influences, False Expectations, Patient Perceptions

During the 1990s, the Australian vaccination rates were very low and very few of the children had nationally recommended immunization coverage. During that time the federal government had issued a welfare incentive program. This welfare incentive program was refurbished in the year 2015 and was replaced by a new law, which was termed as the No Jab No Pay policy. The Australian families were eligible to receive federal benefits of up to 15,000 dollars per child per year depending on the status of immunization of the family members. Such benefits will not be applicable for those individuals, who do not participate in immunization programs or those whose children of age groups 1, 2 and 5 years old are not vaccinated by the recommended vaccines. The Australian Government had indicated a savings of 380 million dollars as a result of the implementation of the new law. Most of the savings were due to benefits which were not paid and it was estimated that 10,000 families would lose eligibility for obtaining payments. The Government revealed that with such a policy, 5738 unvaccinated children received vaccinations and 187,695 children who were under vaccinated had caught up with the vaccination schedules. Although favorable outcomes has resulted from the implementation of the policy but still immunization coverage has been found to be disproportionately low among welfare dependant families[14].

However, another study revealed that such policy based on the alliance of the state and the pharmaceutical companies are in direct violation to the principle of informed consent. The mandatory regime around the legislation thereby undermines the freedom of speech and also carries out implementations that silences the voice of criticism. With the No Jab No Pay policy, there is no question of consent that needs to be obtained from individuals as it is mandatory for all, which would otherwise result in exemption from much needed benefits, which are also their fundamental rights. According to the UNESCO Universal Declaration on Bioethics and Human Rights (UDBHR) (2005) which states, “any preventative, diagnostic and therapeutic medical intervention is only to be carried out with the prior, free and informed consent of the person concerned, based on adequate information”[15]. Proper education is the right of every children but with the No Jab No Pay policy, children will be prevented from attaining their basic rights if complete vaccination is not done. Moreover, with the lack of informed consent, mandatory vaccination can have ne4gative effects with respect to the health of the individuals, which in turn can have life long consequences or vaccine related deaths. Moreover, questions also arise of the efficacy of these pharmaceutical companies to determine the quality of the vaccines. Thus, rather than scrutinizing whether this policy will really benefit the individuals, such health policies have become highly politicized, where only profits and savings are being calculated rather than giving importance to the individual consent to obtain vaccination[16][17].

Informed Consent with Research Involving Children, Vulnerable People

The No Jab No Pay policy requires the parents to enable their children of up to 19 years of age to participate in the immunization programs and other catch up programs[18]. According to this policy, the Government revealed that 508.3 million dollars will be saved in the next 5 years[19]. However, research studies have revealed that poor socio-economic status may be associated with non-vaccination or under vaccination of the children in Australia. National health performance data revealed that children who are below 5 years of age and belonging to rich suburbs located in the regions of Sydney and Melbourne and other affluent suburbs were fully vaccinated and were up date with their vaccination schedules[20]. Thus, it indicated that the immunization coverage was lower in the regions where the individuals lived in poor socio-economic conditions[21]. This in turn exposed the inherent inequity present in the newly established No Jab No Pay policy. This inequality is further contributed by the fact that financial penalty would be incurred by those who live at the lower end of the society that is the low socio-economic strata. Such individuals are in need of these financial benefits assistance and payments. Thus, apart from the challenges the policy brings with respect to informed consent, it also has other challenges like social inequity.

A study was carried out in order to determine the childhood immunization coverage in Victoria by age and vaccine cohort[22]. The ACIR was analyzed and data was obtained of the immunization coverage in Victoria. Results obtained in the study revealed that in the age cohort of 12- less than 15 months, immunization coverage was found to be lowest in the area with the lowest socio-economic quintile score with respect to all vaccines. When rankings were carried out with respect to financial status using the IER score, immunization coverage was again found to be lowest in the previous socio-economic status quintiles in the case of both the 24- less than 27 month and 60 – less than 63 month cohorts. Therefore, it indicated that financial constraints acted as a barrier to achieve high and far reaching degrees in immunization coverage. Moreover, it was also found that the proportion of the children in the lowest socio economic quintile who remained partially vaccinated were 20-50% higher than those children who were living in most advantaged areas. Additionally, it was also found that costs of care prevented 16% of Australians to undergo medical tests or visit a doctor.

Advantages of No Jab No Pay Policy: Increasing Vaccination Rates

Various financial barriers to immunization coverage were determined, which were found to be transportation costs, lack of time from work and consultation costs. These financial barriers were found to be associated with the difficulty to access the healthcare services. Moreover, the study indicates that with the implementation of the No Jab No Pay policy, further hardships and financial burdens will be applied to the already disadvantaged population. The study also indicates the need to develop strategies that would help to address these financial barriers faced by the disadvantaged society belonging to the lower strata of the socio-economic ladder[23].

However, contradictory to the above findings it has been reported that many children with recorded objections in vaccinations or who have received either no vaccination or one vaccination belonged to the higher socio-economic strata with respect to economic resources as compared to the children living in poor socio-economic conditions. According to this study, wealthy individuals registers objections against immunizations more frequently than their financially disadvantaged counterparts[24]. These educated individuals unlike their poor counterparts belonging to the other end of the socio-economic strata question the efficacy of the vaccines with regards to safety and efficacy. This results in vaccination hesitancy. Thus, the No Jab No Pay policy ensures that such objections are not applicable. This is because the No Jab No Pay policy ensures tracking of the vaccine objections in Australia. However, without the use of informed consent, the No Jab No Pay policy raises questions with regards to balancing of parental autonomy and medical paternalism with respect to healthcare provision for children[25]. Thus, the study questions the inequity issue due to the implementation of the policy. This is because individuals belonging to higher socio-economic status are not subjected to any forms of penalty for not carrying out complete immunization of their children or not vaccinating them at all. This is because they either do not claim for such child benefit schemes or even if they are exempted for not carrying out proper immunization of their children, they will not face any financial hardships. Moreover, the No Jab No Pay policy also affects the migrant families of Australia. Although the migrant families either have very low or no rates of objection from immunizations but they face various other barriers to immunization. One of the barriers were poor recording or absolutely no recording of the overseas or catch up vaccinations in the ACIR. This resulted in unfair exemption of the migrant families from payment benefits[26]. Such inequities faced by the migrant families needs to be addressed by the Government, particularly the policy makers and even the politicians in order to evaluate the success of the No Jab No Pay policy. Thus, the study revealed that access issues and financial problems are some of the barriers that prevent vaccine uptakes. However, the study also revealed lower vaccine uptakes on the other side of the socio economic strata that is the educated and skilled individuals. Thus, the study warrants investigation on the impact of socio economic status on the vaccine uptake of individuals and also urges the need of immunization policies that would maximize the rates of immunization among individuals belonging to both the higher and lower strata of the socio-economic ladder. Moreover, it also addresses the need to develop tools that would monitor the trends in vaccine objections and in turn will help to develop effective and timely interventions[27].

Disadvantages of No Jab No Pay Policy: Challenges to Informed Consent, Social Inequity

The legislation prevents objections that are based on either conscience or religion. But medical objections can be acceptable only on the grounds that such medical objections be verified by general practitioners. Vaccination exemptions can be administered on grounds of contradictions like anaphylaxis or immunosuppression. However, general practitioners verify such exemptions. But the most pressing problem is associated with migrant or refugee children. The migrant or refugee families face difficulties in gaining eligibility for obtaining Centrelink payments due to lack of updated records about their vaccinations or immunizations in the ACIR. Due to the lack of such updated records they lose their chances of getting the benefits even if they have fully immunized their children.

Moreover, increased pressure on the vaccination providers with respect to clarifying the vaccination histories of the refugee families, updating the ACIRs and providing catch up vaccinations for the migrant families. Thus, such increase in pressure results in the vaccination providers being unprepared with inadequate resources in order to meet the growing demands of the refugee or migrant population of Australia. Moreover, due to the mobility of the refugee families the refugee children obtain their vaccinations from different regions and also from different healthcare sectors[28]. Thus, such preparation of time consuming reports prevents the submission and eventual registration of the data in the ACIR. Moreover, some of the healthcare providers believe that calculating the missed vaccination schedules for the migrant children is very difficult as compared to the indigenous children. Further another concern with the new legislation is that the refugee children do not need hepatitis immunizations due to their natural immunity resulting from infection or unrecorded overseas vaccination. According to previous Australian data, migrants or refugees from East Africa or the children belonging to the Karen refugees have immunity to or are infected by Hepatitis B infections[29]. Thus, such children do not need Hepatitis B vaccinations and are provided with other catch up vaccines. But the problem is that such children are not regarded as completely immunized in the ACIR. As a result they require medical exemptions verified by general practitioners but the problem they face is that they have changed their general practitioners as a result of their mobility, which results in proper recording of their vaccination histories, thereby resulting in reluctance on the part of the practitioners to exempt them from the vaccinations[30].

Thus, keeping in mind the above discussed facts, the new legislation has given rise to various challenges with respect to informed consent. Firstly, informed consent ensures that participants can refuse any medical treatment or vaccination without being subjected to any form of penalty. However, this legislation imposes penalties in the form of exemption from benefits like tax payments and child care benefits. Moreover, in order to obtain informed consent, individuals are not forced to participate in medication trials or programs, however, this legislation forces individuals to participate in the vaccination programs. Moreover, informed consent also allows individuals to refuse treatment based on religious preferences. However, this legislation also prevents refusals based on religion. Parents have the fundamental right of taking decisions on behalf of their children and if children are above 7 years old, then their consent is also required. However, the No Jab No Pay legislation not only prevents the parents from executing their rights of taking decisions on whether their children are going to get vaccinated or not but it also does not obtain consent from the children. Refusal results in not only exemption from tax benefits but also exemption from child care benefits, which acts as a barrier for children to obtain their primary education[31]. The legislation also is a challenge with respect to the migrant and the refugee families of Australia as well as those belonging to the lower rung of the socio-economic ladder. Not only they are incapable of understanding the facts associated with the vaccination program but also cannot access such programs. As a result, obtaining informed consent from them is challenging, which results in their exemption from various benefits[32][33]. Moreover, obtaining informed consent from educated people is also challenging because of the fact they have information about previous histories associated with adverse events due to vaccinations and also because they have perceptions that prevent them to participate in such programs[34].

Childhood Immunization Coverage in Victoria

Thus, it can be said that the legislation although provides benefits and increases the immunization coverage but still there are various loopholes in the legislation, which needs to be addressed. These arguments about the loopholes of the legislation have been proven by various evidences. According to Dr. Margie Danchin of the Murdoch Children’s Research Institute, “the No Jab No Pay policy was introduced with little thought for the complexities of minority groups such as migrants, who were almost always pro-vaccination”[35]. According to Dr. Danchin although such migrant families want to remain up to date with their vaccinations but lack of access to healthcare providers act as barriers. Moreover, she also reveals the difficulties in maintaining an accurate Australian Immunization Register or AIR, which prevents the migrants to receive Centrelink payments. Moreover, according to Jane Gunn, who is a professor of general practice at the University of Melbourne the general practitioners and nurses play a key role in updating the immunization data in the AIR but due to the time consuming process, such records are not completely updated. According to her “this highlights the problem of duplication in our health care system and the need for more integrated medical records and information-sharing”. Moreover, the legislation also adds to the bureaucratic burden as the migrant children who have natural immunity require referrals for exemptions from practitioners.

According to Louis Newman, who is a professor of Psychiatry at the Royal Women’s Hospital and the University of Melbourne, special provisions are required within the legislation in order to address the delay in payments and support to the migrant families who are in immediate need of such financial services[36]. Moreover, the Government aims to save millions of dollars at the expense of the health of innocent migrant children by preventing them from getting benefits and access to education. Additionally, the parents who object to the vaccination reforms face a welfare damage of 15,000 dollars, the biosecurity controls force individuals to get vaccinated, presence of vaccine vigilantes who vaccinate without parental consent, among other[37]. Additionally, Section 3.5 of the Australian Code of Conduct states that consent is “a person’s voluntary decision about medical care that is made with knowledge and understanding of the benefits and risks involved”[38]. Thus, the legislation also conflicts with this code of conduct as it threatens individuals to carry out mandatory immunizations otherwise bear the risk of losing benefits with respect to finances and child care. Moreover, the children also lose their fundamental right of obtaining education. Section 10, subsection C, protects the rights of the patients to give full and free consent for a particular medical treatment. But the legislation will limit the right of the individuals to give full consent without being forced or blackmailed[39].  

Conclusion

The legislation, excludes valid contradictions like family histories with respect to adverse reactions of vaccines, convulsions, eczema, asthma, atopy, neurological conditions and also natural immunity. The doctors are told to ignore these contradictions while giving vaccinations. In such context, the role of obtaining informed or valid consent comes into play[40]. Moreover, according to the Australian Immunization Handbook, valid consent is defined as the voluntary agreement of a patient or an individual to a particular procedure only after obtaining reliable information with respect to risks and benefits associated with it[41]. Consent is therefore needed before vaccination after determining the any potential risks of medical conditions associated with it. Moreover, the right to vaccinate children lies fundamentally with the parent and the Government or the doctors have no right to implement such harsh rules that can have severe consequences in the future with respect to vaccine reactions that can be debilitating along with the burden of finances due to lack of Government compensations[42]. Thus, specific reforms are necessary in the legislation that would carry out vaccination based on valid consent and should not take away the legal rights of the citizens to obtain the benefits that would ensure a bright future for their children with respect to health and education. Moreover, the legislation should also be reformed keeping in mind the benefits of the migrants and those belonging to the lower socio-economic strata.

Conclusion

This report provides an analysis of the No Jab No Pay reforms or legislation that has been implemented in Australia. According to this legislation, individuals will get tax and child care benefits only if their children below the age of 20 years are up to date with their vaccination schedules. Although this legislation has resulted in increased vaccination rates and coverage but it does not provide benefits to those who do not carry out complete i9immunization of their children. Moreover, due to the various loopholes of the legislation, the individuals belonging to the lower socio-economic strata and the migrant or refugee children are also unfairly affected. Due to the lack of their vaccination records, they are deprived from the benefits of which they are in urgent need. Moreover, it also violates the legal rights of the citizens with regards to valid consent for administration of services. Thus, the country wants to make a large amount of savings at the cost of the fundamental rights of the citizens, especially the financially deprived and migrant populations. Thus, various reforms to the legislation are necessary in order to maintain the fundamental rights of the citizens. Thus, it can be concluded that the No Jab No Pay legislation although beneficial to some but overall its beneficence is not universally distributed to all, thereby giving rise to hardships in the form of exemption from benefits and basic rights of children to obtain proper education.

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