In Their Voices: Children Living with HIV in Jamaica Speak

Danielle Toppin

Recognizing the unique circumstances of children whose lives have been directly impacted by HIV, a number of worthwhile initiatives have been launched in Jamaica to address the issue.

In the discussions around advocacy for those living with, or affected by HIV, children are often differently treated than are adults, with their age and dependence being two key factors that shape their experiences of living with the infection. In recognition of the unique circumstances of children whose lives have been directly impacted by HIV, a number of worthwhile initiatives have been launched in Jamaica, with the central focus being to provide young people with a platform on which they can air these unique experiences.

In Jamaica, as of January 2007, 5,125 children under the age of 15 were estimated to have been orphaned by AIDS. In 2006, 73 children aged zero to nine years old were diagnosed with HIV.

In the Rapid Assessment of the Situation of Orphans and Other Children living in Households Affected by HIV/AIDS in Jamaica (2002), the unique circumstances of this group of children was outlined. Issues such as access to poverty, effective public health care, stigmatization, insufficient psycho-social support and inadequate network systems all come together to negatively impact the lives of children affected by HIV. Negative cultural attitudes towards the illness negatively impact the level of support – both emotional and financial – that many children receive from their families and immediate support groups following the death of their parents or caregivers. This is further complicated in smaller communities, thereby increasing the stigmatization that is endured during an already troublesome period of their lives.

In recognition of these dynamics, there have been ongoing efforts to centralize the experiences of these children. In 2006, twenty-five young persons that are either infected with, or affected by HIV came together, with the guidance of Panos Caribbean to produce a series of public service announcements entitled "Our Own Voices: Youth Fighting HIV." Providing the young participants with basic journalistic training, as well as training on basic sexual and reproductive health issues and child rights, the program has not only sought to create an avenue for this group to cope with the realities of their lives by giving voice to their concerns, but also to use their experiences as vehicles for change.

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In the last week, another powerful initiative has been launched by affected and infected youths, Panos and a local media house, the Gleaner Company. In an initiative entitled "Special Delivery," children living with, and/or affected by HIV will deliver a number of letters to influential persons in the society, advocating positive change on issues that they have identified as being key to their lives. What is of special significance is that the issues that are addressed are those that the children and adolescents themselves have identified, based on the belief that they themselves are most intimately aware of their needs and concerns. In this manner, there are two key outcomes: one, the development of a people-centered approach which can better inform policy and, two, a shift in the lives of the children themselves, whereby, through advocacy they are better able to play active roles in their own lives.

The letters, which are published in the Jamaica Gleaner, have thus far addressed issues such as the need for parenting seminars and the inclusion of parenting components to HIV projects, which would better enable their parents and caregivers to cope not only with their own status, but with the impact on their children.

The two mentioned initiatives illustrate not only the powerful potential of the media for affecting change, but also the importance of privileging the experiences of affected groups, in this case children infected with, and affected by HIV. In so doing, we are able to affect change on two key levels: individual empowerment and social consciousness.

By highlighting the stories of children, as told by children themselves, the "Special Delivery" initiative clearly takes a step towards challenging cultural attitudes towards HIV and those infected with it.

Commentary Sexual Health

Parents, Educators Can Support Pediatricians in Providing Comprehensive Sexuality Education

Nicole Cushman

While medical systems will need to evolve to address the challenges preventing pediatricians from sharing medically accurate and age-appropriate information about sexuality with their patients, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Last week, the American Academy of Pediatrics (AAP) released a clinical report outlining guidance for pediatricians on providing sexuality education to the children and adolescents in their care. As one of the most influential medical associations in the country, AAP brings, with this report, added weight to longstanding calls for comprehensive sex education.

The report offers guidance for clinicians on incorporating conversations about sexual and reproductive health into routine medical visits and summarizes the research supporting comprehensive sexuality education. It acknowledges the crucial role pediatricians play in supporting their patients’ healthy development, making them key stakeholders in the promotion of young people’s sexual health. Ultimately, the report could bolster efforts by parents and educators to increase access to comprehensive sexuality education and better equip young people to grow into sexually healthy adults.

But, while the guidance provides persuasive, evidence-backed encouragement for pediatricians to speak with parents and children and normalize sexual development, the report does not acknowledge some of the practical challenges to implementing such recommendations—for pediatricians as well as parents and school staff. Articulating these real-world challenges (and strategies for overcoming them) is essential to ensuring the report does not wind up yet another publication collecting proverbial dust on bookshelves.

The AAP report does lay the groundwork for pediatricians to initiate conversations including medically accurate and age-appropriate information about sexuality, and there is plenty in the guidelines to be enthusiastic about. Specifically, the report acknowledges something sexuality educators have long known—that a simple anatomy lesson is not sufficient. According to the AAP, sexuality education should address interpersonal relationships, body image, sexual orientation, gender identity, and reproductive rights as part of a comprehensive conversation about sexual health.

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The report further acknowledges that young people with disabilities, chronic health conditions, and other special needs also need age- and developmentally appropriate sex education, and it suggests resources for providing care to LGBTQ young people. Importantly, the AAP rejects abstinence-only approaches as ineffective and endorses comprehensive sexuality education.

It is clear that such guidance is sorely needed. Previous studies have shown that pediatricians have not been successful at having conversations with their patients about sexuality. One study found that one in three adolescents did not receive any information about sexuality from their pediatrician during health maintenance visits, and those conversations that did occur lasted less than 40 seconds, on average. Another analysis showed that, among sexually experienced adolescents, only a quarter of girls and one-fifth of boys had received information from a health-care provider about sexually transmitted infections or HIV in the last year. 

There are a number of factors at play preventing pediatricians from having these conversations. Beyond parental pushback and anti-choice resistance to comprehensive sex education, which Martha Kempner has covered in depth for Rewire, doctor visits are often limited in time and are not usually scheduled to allow for the kind of discussion needed to build a doctor-patient relationship that would be conducive to providing sexuality education. Doctors also may not get needed in-depth training to initiate and sustain these important, ongoing conversations with patients and their families.

The report notes that children and adolescents prefer a pediatrician who is nonjudgmental and comfortable discussing sexuality, answering questions and addressing concerns, but these interpersonal skills must be developed and honed through clinical training and practice. In order to fully implement the AAP’s recommendations, medical school curricula and residency training programs would need to devote time to building new doctors’ comfort with issues surrounding sexuality, interpersonal skills for navigating tough conversations, and knowledge and skills necessary for providing LGBTQ-friendly care.

As AAP explains in the report, sex education should come from many sources—schools, communities, medical offices, and homes. It lays out what can be a powerful partnership between parents, doctors, and educators in providing the age-appropriate and truly comprehensive sexuality education that young people need and deserve. While medical systems will need to evolve to address the challenges outlined above, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Parents and Caregivers: 

  • When selecting a pediatrician for your child, ask potential doctors about their approach to sexuality education. Make sure your doctor knows that you want your child to receive comprehensive, medically accurate information about a range of issues pertaining to sexuality and sexual health.
  • Talk with your child at home about sex and sexuality. Before a doctor’s visit, help your child prepare by encouraging them to think about any questions they may have for the doctor about their body, sexual feelings, or personal safety. After the visit, check in with your child to make sure their questions were answered.
  • Find out how your child’s school approaches sexuality education. Make sure school administrators, teachers, and school board members know that you support age-appropriate, comprehensive sex education that will complement the information provided by you and your child’s pediatrician.

School Staff and Educators: 

  • Maintain a referral list of pediatricians for parents to consult. When screening doctors for inclusion on the list, ask them how they approach sexuality education with patients and their families.
  • Involve supportive pediatricians in sex education curriculum review committees. Medical professionals can provide important perspective on what constitutes medically accurate, age- and developmentally-appropriate content when selecting or adapting curriculum materials for sex education classes.
  • Adopt sex-education policies and curricula that are comprehensive and inclusive of all young people, regardless of sexual orientation or gender identity. Ensure that teachers receive the training and support they need to provide high-quality sex education to their students.

The AAP clinical report provides an important step toward ensuring that young people receive sexuality education that supports their healthy sexual development. If adopted widely by pediatricians—in partnership with parents and schools—the report’s recommendations could contribute to a sea change in providing young people with the care and support they need.

Commentary Politics

In Mike Pence, Trump Would Find a Fellow Huckster

Jodi Jacobson

If Donald Trump is looking for someone who, like himself, has problems with the truth, isn't inclined to rely on facts, has little to no concern for the health and welfare of the poorest, doesn't understand health care, and bases his decisions on discriminatory beliefs, then Pence is his guy.

This week, GOP presumptive presidential nominee Donald Trump is considering Mike Pence, among other possible contenders, to join his ticket as a vice presidential candidate.

In doing so, Trump would pick the “pro-life” governor of a state with one of the slowest rates of economic growth in the nation, and one of the most egregious records on public health, infant and child survival, and poverty in the country. He also would be choosing one of the GOP governors who has spent more time focused on policies to discriminate against women and girls, LGBTQ communities, and the poor than on addressing economic and health challenges in his state. Meanwhile, despite the evidence, Pence is a governor who seems to be perpetually in denial about the effects of his policies.

Let’s take the economy. From 2014 to 2015, Indiana’s economic growth lagged behind all but seven other states in the nation. During that period, according to the U.S. Department of Commerce, Indiana’s economy grew by just 0.4 percent, one-third the rate of growth in Illinois and slower than the economies of 43 other states. Per capita gross domestic product in the state ranked 37th among all states.

Income inequality has been a growing problem in the state. As the Indy Star reported, a 2014 report by the United States Conference of Mayors titled “Income and Wage Gaps Across the US” stated that “wage inequality grew twice as rapidly in the Indianapolis metro area as in the rest of the nation since the recession,” largely due to the fact “that jobs recovered in the U.S. since 2008 pay $14,000 less on average than the 8.7 million jobs lost since then.” In a letter to the editor of the Indy Star, Derek Thomas, senior policy analyst for the Indiana Institute for Working Families, cited findings from the Work and Poverty in Marion County report, which found that four out of five of the fastest-growing industries in the county pay at or below a self-sufficient wage for a family of three, and weekly wages had actually declined. “Each year that poverty increases, economic mobility—already a real challenge in Indy—becomes more of a statistical oddity for the affected families and future generations.”

In his letter, Thomas also pointed out:

[T]he minimum wage is less than half of what it takes for a single-mother with an infant to be economically self-sufficient; 47 percent of workers do not have access to a paid sick day from work; and 32 percent are at or below 150 percent of the federal poverty guidelines ($29,685 for a family of three).

Despite the data and the struggles faced by real people across the state, Pence has consistently claimed the economy of the state is “booming,” and that the state “is strong and growing stronger,” according to the Northwest Indiana Times. When presented with data from various agencies, his spokespeople have dismissed them as “erroneous.” Not exactly a compelling rebuttal.

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As a “pro-life” governor, Pence presides over a state with one of the worst infant mortality rates in the nation. Data from the Indiana State Department of Health reveals a “significant disparity” between white and Black infant mortality rates, with Black infants 1.8 times more likely to die than their white counterparts. The 2013 Infant Mortality Summit also revealed that “[a]lmost one-third of pregnant women in Indiana don’t receive prenatal care in their first trimester; almost 17% of pregnant women are smokers, compared to the national rate of 9%; and the state ranks 8th in the number of obese citizens.”

Yet even while he bemoaned the situation, Pence presided over budget cuts to programs that support the health and well-being of pregnant women and infants. Under Pence, 65,000 people have been threatened with the loss of  food stamp benefits which, meager as they already are, are necessary to sustain the caloric and nutritional intake of families and children.

While he does not appear to be effectively managing the economy, Pence has shown a great proclivity to distract from real issues by focusing on passing laws and policies that discriminate against women and LGBTQ persons.

He has, for example, eagerly signed laws aimed at criminalizing abortion, forcing women to undergo unnecessary ultrasounds, banning coverage for abortion care in private insurance plans, and forcing doctors performing abortions to seek admitting privileges at hospitals (a requirement the Supreme Court recently struck down as medically unnecessary in the Whole Woman’s Health v. Hellerstedt case). He signed a “religious freedom” law that would have legalized discrimination against LGBTQ persons and only “amended” it after a national outcry. Because Pence has guided public health policy based on his “conservative values,” rather than on evidence and best practices in public health, he presided over one of the fastest growing outbreaks of HIV infection in rural areas in the United States.

These facts are no surprise given that, as a U.S. Congressman, Pence “waged war” on Planned Parenthood. In 2000, he stated that Congress should oppose any effort to recognize homosexuals and advocated that funding for HIV prevention should be directed toward conversion therapy programs.

He also appears to share Trump’s hatred of and willingness to scapegoat immigrants and refugees. Pence was the first governor to refuse to allow Syrian refugees to relocate in his state. On November 16th 2015, he directed “all state agencies to suspend the resettlement of additional Syrian refugees in the state of Indiana,” sending a young family that had waited four years in refugee limbo to be resettled in the United States scrambling for another state to call home. That’s a pro-life position for you. To top it all off, Pence is a creationist, and is a climate change denier.

So if Donald Trump is looking for someone who, like himself, has problems with the truth, isn’t inclined to rely on facts, has little to no concern for the health and welfare of the poorest, doesn’t understand health care, and bases his decisions on discriminatory beliefs, then Pence is his guy.