Children living with HIV: reshaping law and policy in Québec to preserve and promote their rights.

Although law may have a less obvious relationship with pediatric HIV than medicine or social work, the legal community also has the potential to make a significant contribution to the lives of HIV-infected chiren. In particular, the law may promote some of the interests and values that children with HIV consider most critical. For the law to be meaningful for HIV-positive children and youth, it must consider and reflect the issues that are of foremost importance to them. For the purposes of this paper, an article that compiled short essays and artistic works by children with HIV was considered to determine some of the concerns that are most significant to them.(7) This article referred to works completed by 24 HIV-infected children and adolescents and 8 non-infected siblings. These children ranged from 5 to 17 years of age, and all were from the United States. Although their stories and pictures differed depending on their distinct situations, two common themes threaded the ideas they put forward. First, these children expressed their hope for a cure for HIV, or at least, for quality medical care that would strive to prolong their lives and preserve their health. Second, many of them conveyed a desire to be treated with equality and dignity, and a hope that having HIV would not interfere with their ability to socialize and interact with their peers.(8)(9)Although HIV is not the only illness that carries such emotional impacts, the social stigma attached to HIV-positive status renders the psycho-social consequences of this disease quite distinct. A child diagnosed with HIV will learn that she is different from those around her given the significant way in which her life and social interactions may change after her diagnosis. Moreover, the way in which families and communities deal with HIV may cause children to perceive it as a shameful or morally reprehensible illness. This likely will be the case where a child is instructed not to disclose the fact that she is HIV-positive. For these reasons, children with HIV may experience severe psychological and emotional repercussions that deserve consideration in assessing how the disease affects their overall well-being.(20) As such, the multi-faceted health issues that arise in the context of pediatric HIV must be recognized, and each distinct aspect of a child's health care needs must receive adequate attention and treatment.(21)Treating children with this medication fails to account for the considerable physiological differences between adults and children with HIV. For example, although adults with HIV remain asymptomatic for an average of ten years after contracting the illness, HIV-infected children develop symptoms more rapidly. Almost fifty percent of children who contract HIV perinatally become symptomatic in the first year of life. By the end of the second year, almost seventy per cent have HIV symptoms, and by their third year, almost all infected children are symptomatic.(25) These distinctions impose an ethical and legal obligation on researchers to investigate the types of treatment that will be effective for the pediatric form of HIV.(26) Without such research, the right to the highest attainable standard of health conferred by article 24 of the U.N. Convention will not be guaranteed for HIV-positive children.

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