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Teens With HIV: The Forgotten Generation?

Posted: 12/06/2013 8:23 am

This week, as we mark World AIDS Day, something of a spotlight is being shone on the needs of adolescents. The 6th Stocktaking Report on Children and AIDS reports that adolescents are the only age category globally in which the number of AIDS-related deaths has increased since 2005. And that increase is not insignificant. AIDS-related deaths amongst those aged 10-19 years increased by 50 per cent from 2005 to 2012. The World Health Organization has also just released its "Guidance on HIV Testing, Counselling and Care for Adolescents Living with HIV".

Clearly the need is urgent, not only to ensure that more adolescents are tested earlier but also to vastly improve our care and support for adolescents living with HIV. In 1996 new combinations of anti-retroviral medications were shown to be highly effective and children in Canada born with HIV after this date are now entering their late teens -- the first "cohort" of babies born with HIV who have had a real chance to stay alive and healthy. The issues that these long-term survivors face and the journey from pediatric to adult HIV care are new territory, for the children and youth themselves as well as the adults who care for them.

In the larger cities in Canada, HIV clinics are located in children's hospitals complete with a range of supports from nurses and social workers, all of whom understand the needs of children living with HIV. When you are born with HIV, there are a few things you really depend on. One of them is your regular visits to the clinic. As a child, you are greeted by warm, friendly staff and volunteers and you get to know them all. You also get to know the other kids who attend clinic and they can become something of an extended family to you. You receive reminders, phone calls and follow up, ensuring appointments are not missed and medication is taken on time. A shock awaits as you approach adulthood. After the age of 18, you can no longer attend the children's clinic and need to move on to an adult clinic or HIV doctor's practice. Although you may have been prepared for this many months in advance and although many HIV doctors are known to be kind and caring specialists, receiving care in an adult setting is a whole new, and often very alien, world.

Through our experience in the AIDS Committee of Durham Region's (ACDR) youth support and social group "Pozzy" and a unique program run by The Teresa Group inside the HIV clinic at Sick Kids Hospital, we have been dealing head-on with these issues. Once in adult care, many young people living with HIV find themselves cut off and alone. Having lost regular opportunities to bond and talk openly with peers about their lives, they may withdraw, increasing the feeling of isolation. Left to their own devices and living in such a fast-paced world, it is easy for them to miss appointments entirely and it becomes even trickier to ensure adherence to medication regimes. Often the adults in their lives, including doctors and case managers, are perceived as not understanding or as being bossy, interfering or simply clueless to the real issues facing that young person. Youth describe the experience of moving from pediatric to adult care as isolating and talk about feeling rejected or even betrayed.

The adolescent years are tough by any standards. The decade between 10 years and 20 brings multiple challenges -- changing bodies, complex interpersonal peer relationships, navigating increasing independence, experiencing sex and intimacy, completing school and facing the future. Now add to that a health issue which, in Canada, is for the most part well managed and presents no immediate crisis, yet carries a stigma worse than any we have ever known. We know the power that social or personal rejection holds for any of us, but for adolescents, these issues are acute. To most teens, wanting to be liked by your peers is more important than managing your health. Fear of being ostracized, stigmatized and bullied are the biggest concerns, followed closely by other life concerns such as school, dating, sex and body image issues, alcohol and recreational drugs.

Both ACDR and The Teresa Group are founding members of OASPY -- the Ontario Agencies Serving Positive Youth. A provincial advocacy and capacity building coalition that promotes the health and dignity of youth living with HIV, OASPY brings together representatives from children's hospitals, agencies working with positive youth as well as youth living with HIV, to provide programming and information sharing to reduce the social isolation felt by positive youth in Ontario. OASPY was also formed to assist youth transitioning from pediatric to adult healthcare, build capacity of positive youth through educational and empowerment opportunities and create ongoing opportunities for positive youth to engage with each other in meaningful ways. It is early days but as we navigate this road together we will learn and share our lessons to know and better understand the challenges faced by adolescents born with HIV and how to address them.

This blog is part of a World AIDS Day series produced by the Interagency Coalition on AIDS and Development (ICAD) in recognition of World AIDS Day (Dec 1). The series runs from Dec. 1-7, 2013 and will feature a selection of blogs written by our member and partner organizations. Each day of the week will address a specific, yet broad topic area, and offer different perspectives and insight on what must be done to achieve the UNAIDS campaign of "Getting to Zero." Disclaimer: The views and opinions expressed in this blog series are those of the authors and do not necessarily reflect those of ICAD."

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  • 1. Most Don't Have Their Infection Under Control

    Only one quarter of the 1.1 million <a href="http://www.cdc.gov/nchhstp/newsroom/docs/2012/Stages-of-CareFactSheet-508.pdf">people with HIV</a> have their <a href="http://www.huffingtonpost.com/2012/07/27/hiv-under-control-1-in-4_n_1711260.html">condition under control</a>, where "under control" means the virus has been suppressed, according to a report released this summer by the Centers for Disease Control and Prevention. "Only if we get <a href="http://www.philly.com/philly/health/HealthDay667108_20120727_Only_1_in_4_Americans_With_HIV_Has_Virus_Under_Control__CDC.html">everyone under regular care</a> for HIV/AIDS can we recognize the full benefits of treatment and prevention," Irene Hall, an epidemiologist at the CDC and one of the authors of the report, told HealthDay. <em><strong>CORRECTION</strong>: The first sentence has been reworded to more accurately reflect the number of people with HIV.</em>

  • 2. Bone Marrow Transplants Could Play A Part In Being HIV-Free

    Two men with HIV and cancer no longer have <a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html">detectable blood levels of the virus</a> after receiving bone marrow transplants for their cancers, news outlets reported this year. Doctors were unable to <a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html">find any traces of HIV</a> in the men's cells after they received the bone marrow transplants while also being treated with antiretrovirals. The finding "suggests that under the <a href="http://abcnews.go.com/blogs/health/2012/07/26/two-more-patients-hiv-free-after-bone-marrow-transplants/">cover of anti-retroviral therapy</a>, the cells that repopulated the patient's immune system appear to be protected from becoming re-infected with HIV," Dr. Timothy Henrich, of Brigham and Women's Hospital, told ABC News. However, the Boston Globe pointed out that it's still too soon to say that these men have been<a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html"> full-on <em>cured</em></a> of HIV, since they are still on the anti-retrovirals. There's no firm word on whether they will go off of the medication.

  • 3. No-Cost HIV Treatment Could Cut New Infection Rates

    New <a href="http://www.huffingtonpost.ca/2012/11/27/free-hiv-drugs-decrease-infection-bc_n_2200393.html">HIV infection rates</a> can be dramatically lowered by making antiretroviral drugs free, a study from Canadian researchers found. The Canadian Press reported on the study, conducted by B.C. Centre for Excellence in HIV-AIDS researchers, which showed that British Columbia -- a province that offers <a href="http://www.huffingtonpost.ca/2012/11/27/free-hiv-drugs-decrease-infection-bc_n_2200393.html">free access to antiretroviral therapy</a> -- had the lowest rate of new HIV infections over a more-than-10-year period, compared with Ontairio and Quebec.

  • 4. Many Young People Don't Know Their HIV Status

    More than half of HIV-infected young people are <a href="http://www.huffingtonpost.com/2012/11/27/hiv-youths-infected-aids-young-people_n_2198629.html">unaware that they have the virus</a>, according to a Centers for Disease Control and Prevention report. "Given everything we know about HIV and how to prevent it in 30 years of fighting the disease, it's just unacceptable that young people are <a href="http://www.huffingtonpost.com/2012/11/27/hiv-youths-infected-aids-young-people_n_2198629.html">becoming infected at such high rates</a>," Reuters reported CDC Director Dr. Thomas Frieden saying. The report also showed that for young people, 72 percent of the new HIV infections were in men who have sex with men, while almost 50 percent were in young, African-American males, Reuters reported. These figures are based on 2010 data.

  • 5. More People Are Living With HIV Than 10 Years Ago

    The number of people <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">living with HIV</a> has increased by 18 percent from 2001 to 2011, according to a report released this year from the United Nations Programme on AIDS. An estimated 34.2 million people around the world are living with HIV. The report also showed that <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">deaths from AIDS </a>have <em>dropped</em>, from 2.3 million in 2005-2006 to 1.7 million in 2011, Reuters reported.

  • 6. The Cost Of HIV Drugs Is Decreasing

    According to the same United Nations report, costs for the cheapest UN-recommended <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">antiretroviral therapy drugs</a> have also decreased over the past 10 years, Reuters reported. A year's worth of the drugs used to cost $10,000 in 2000 for one person; now, it costs $100 a year.

  • 7. HIV Treatment Truvada Can Also Be Used As A Preventive Measure

    The Food and Drug Administration this year officially approved the <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">drug Truvada</a> -- which has been used since 2004 as a treatment for HIV -- to be sold as a preventive measure for people who don't have the infection, but are at high risk for it. The FDA said that the pill should be considered for <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">preventive use</a> not only by gay or bisexual men who are at high risk for HIV, but also heterosexual men and women who may also face HIV risks, the Associated Press reported. <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">Heterosexual men and women</a> make up more than one-fourth of new cases of HIV, and "that's not a portion of the epidemic we want to ignore," the CDC's Dr. Dawn Smith, who was the lead author of the new recommendations, told the Associated Press. The FDA also approved a new drug this year, <a href="http://www.huffingtonpost.com/2012/08/27/stribild-hiv-treatment-fda_n_1834734.html">Stribild</a>, to treat HIV, Reuters reported.

  • 8. Engineered Stem Cells Could Play A Part In Fighting HIV

    In findings published this year in the journal <em>PLoS Pathogens</em>, scientists from the University of California, Los Angeles found that it's possible to <a href="http://www.huffingtonpost.com/2012/04/16/stem-cell-aids-hiv-study-ucla_n_1428660.html">genetically engineer stem cells</a> to attack living HIV-infected cells in mice. While the study was only for "proof-of-principle," it "lays the groundwork for the potential use of this type of an approach in combating HIV infection in infected individuals, in hopes of eradicating the virus from the body," study researcher Dr. Scott G. Kitchen, an assistant professor of medicine at UCLA, said in a statement.

  • 9. Pretty Much Everyone Should Be Screened For HIV

    People should be screened for HIV even if they're not at high risk of contracting the infection, according to draft recommendations released just last month by the U.S. Preventive Services Task Force. The recommendations would mean that everyone between the ages of 15 and 65 should be <a href="http://www.huffingtonpost.com/2012/11/19/routine-hiv-screening-us-preventive-services-task-force-uspstf_n_2161090.html">screened for HIV</a>, even if they're not at high risk for it, Reuters reported. "The prior recommendations were for screening high-risk adults and adolescents," Dr. Douglas Owens, a member of the USPSTF task force and a Stanford University medical professor, told Reuters. "The current recommendation is for <a href="http://www.huffingtonpost.com/2012/11/19/routine-hiv-screening-us-preventive-services-task-force-uspstf_n_2161090.html">screening everyone</a>, regardless of their risk."

  • 10. People Should Be Treated With Antiretrovirals As Soon As They're Diagnosed WIth HIV

    <em>All</em> HIV patients should be <a href="http://healthland.time.com/2012/07/23/new-advice-calls-for-putting-all-hiv-patients-on-drug-treatment/">treated immediately with antiretrovirals</a>, according to new guidelines issued this year from a panel of the International Antiviral Society-USA, as reported by <em>TIME</em>. The recommendations are counter to previous guidelines, which said that antiretrovirals should only be used if the CD4 count -- a measure of immune cells in a person's body -- becomes less than 350 cells for every mm3 of blood.

  • Growing Up with HIV

    During the AIDS 2012 conference, Christina Rodriguez talks about growing up with HIV.

 

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