March 29, 2018 - How Youth Can Lead the Charge on National Youth HIV & AIDS Awareness Day
We will observe National Youth HIV & AIDS Awareness Day on April 10, 2018. This is the fifth year we have observed this awareness day in the US (1). A quick look at the HIV diagnosis numbers shows how important this awareness day is. The CDC reports that 40% of HIV diagnoses occurred among people aged 13-29 in 2014 (2). That same age group only represents 23% of the US population, which clearly shows the big effect HIV has had on young people versus other age groups. (For more about HIV and AIDS diagnosis rates among young people, by race and ethnicity, and by US state, visit the interactive CDC Atlas project here.)
Because young people bear so much of the impact of HIV, we have to address the epidemic among them directly. That is why investigators within the Adolescent Medicine Trial Network for HIV/AIDS Interventions (ATN) study prevention and test ways to achieve better care for those living with HIV in the United States for young people ages 12-24.
Youth involvement in HIV awareness and testing is absolutely necessary. The ATN would be ineffective without the young people who work with us every day to help us defeat the HIV epidemic. They inspire us and allow us to make important discoveries that push us closer to ending one of the biggest public health challenges of our times.
National Youth HIV & AIDS Awareness Day is about how youth and young adults are impacted by the HIV epidemic, and the work and actions that they take to protect themselves and others. So how can you get involved?? Let’s look at a few of the things young people can do to observe this national day of awareness.
Fight HIV Stigma. When HIV was first discovered, many people died from infections since the virus attacks the immune system. At first, there was a lack of research and treatment options for people living with HIV. Misconceptions around how HIV was transmitted and discrimination against those who were positive led to fear and misunderstanding about the disease that is still with us today. This fear creates stigma, meaning that there are still misconceptions and prejudices even though there are increased HIV prevention and awareness initiatives. Stigma can keep people from getting tested, seeking care, or even talking about HIV.
Young people can reduce stigma by educating themselves and others about HIV. After decades of HIV and AIDS research, today we have medications that allow people with HIV to live healthy lives. By taking antiretroviral medication regularly, people living with HIV reduce the virus in their bodies to the point that HIV is undetectable, and so HIV can’t be transmitted to others. Young people can educate themselves and their communities about these facts and help combat the fear that creates so much stigma around HIV.
Serving on Youth Community Advisory Boards. Community Advisory Boards, or CABs, help all kinds of organizations do their work better, especially ones that do clinical research. Many organizations look to involve youth in their community advisory boards to make sure that youth opinions and ideas are being listened to, respected and integrated into services that these organizations provide. You can express your interest in joining an HIV-related organization’s CAB to help with its mission. In addition, many clinical sites where studies are done have their own local CABs, which can be found in many cities around the country. For example, the ATN has a youth CAB with representatives from around the US. Read about some of these ATN youth CAB members here.
Getting Tested. Everyone between the ages of 13-64 needs to be tested for HIV at least once in their lives, according to the CDC (3). People in higher-risk groups need to be tested more often, sometimes up to every three months. You can assess your own risk by visiting this tool from the CDC. A 2018 report from the CDC showed that among women aged 15-24 in the US, 63.9% had never been tested for HIV. Among men in that age group, 73.7% hadn’t ever been tested (4).
If it’s time for you to be tested, here’s what you need to know: a rapid test only takes about 20 minutes to get results, but a positive test will need another blood test to confirm the results. There are other HIV blood tests that could take a day to a week for results depending on the laboratory. HIV.gov has resources for finding a location near you where you can get tested. Then visit the CDC website to see how often you should be tested. There are also home testing kits that can use dried blood spots or oral swabs that can be purchased over the counter or online.
Should You Use PrEP? There is medication called PrEP (Pre-exposure Prophylaxis) that people who are at high risk for HIV can take to reduce their chances of contracting HIV by more than 90%, according to the CDC (5). Young people should consider taking PrEP if they are currently HIV negative, are sexually active and fit the CDC specifications for a “high risk” population (see the risk assessment tool here).
Currently, only about 20% of the population that could be taking PrEP in the US is actually doing so (6). Yet, as long as someone takes the medication every day, it can be up to 100% effective in preventing HIV infection (7). If you are not sure you can afford PrEP, the company that makes the only currently approved form of PrEP, called Truvada, has drug assistance programs to help pay for PrEP. People who participate in many PrEP-related studies may also find that PrEP is provided to them for free. Read more about PrEP here.
Participate in clinical studies. If you are inspired to help end HIV, one of the best things you can do as a young person is to participate in a research study. The more that young people get involved in clinical research studies, the better the research becomes as it is more representative for a population of young people. Take, for example, a new medication. When medications go through clinical trials, the studies aren’t always designed with young people in mind. So critical HIV medications that might help young people can’t be recommended by the FDA for that age group if trials aren’t conducted that include them. Those trials require participants to help further research that can save lives. You should consider your own health, and you may want to consult with your doctor before getting involved. Email firstname.lastname@example.org if you would like to find out if there is an ATN study enrolling participants near you.
If you are inspired to help fight HIV, educate yourself about prevention and how people today are living with this disease. Start conversations with the people around you about HIV on April 10, 2018, the National Youth HIV & AIDS Awareness Day, to help others learn about the state of the epidemic among young people. You can also be a supportive person for people living with HIV in your community. Stigma can make people living with HIV not disclose their status. You may have someone in your social circle that is living with HIV, and your support can be critical for that person.