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HIV Awareness Days: 6 Ways To Advocate for Yourself While Living With HIV

Updated on July 10, 2024

Raising awareness of human immunodeficiency virus (HIV) is important all year long to spread the word about HIV prevention, treatment, and impact on well-being. There are multiple HIV awareness days throughout the year that provide opportunities to advocate for yourself while living with the disease.

For example, Oct. 15 is National Latinx AIDS Awareness Day (NLAAD). This important annual event aims to raise awareness about the impact of HIV and AIDS within Latinx communities through educational social media campaigns. As part of the event, people with and without HIV are reminded to work together to reduce HIV stigma, increase testing, use HIV prevention tools, and get connected to treatment. Other HIV awareness days include:

  • National Black HIV/AIDS Awareness Day on Feb. 7
  • Zero HIV Stigma Day on July 21
  • National HIV/AIDS and Aging Awareness Day on Sept. 18

It’s important to recognize that certain populations are more at risk for developing HIV, and some experience greater burdens from the disease, including discrimination and and unequal access to health resources. No single person can fix these discrepancies, but by working together to raise awareness and advocating for everyone living with HIV/AIDs, we can make a difference.

Here are six small, significant steps you can take to advocate for yourself and others on HIV awareness days.

1. Understand Racial Differences in HIV Diagnosis

While no one is immune from acquiring HIV, the disease affects some groups much more than others. The Centers for Disease Control and Prevention (CDC) estimates that, in 2021, Black/African American people made up 40 percent of the new diagnoses of HIV in the United States. Hispanic/Latino people accounted for 29 percent of diagnoses, and white people accounted for 25 percent.

Although the incidence (number of people with new diagnosis) appears similar between Hispanic/Latino and white populations, it is actually more uneven than it seems. Why? According to the U.S. Census Bureau, the U.S. population is about 19.1 percent Hispanic/Latino and 58.9 percent is “white alone (not Hispanic or Latino).” This means that Latinx communities are disproportionately affected by the HIV epidemic in the U.S., which is why days like National Latinx AIDS Awareness Day exist.

The discrepancy in incidence among Black people is also striking: As noted, 40 percent of people newly diagnosed with HIV in the U.S. are Black/African American — yet only 13.6 percent of the U.S. population identifies as Black or African American, according to the U.S. Census Bureau.

Many HIV and AIDS awareness days — such as National Youth HIV & AIDS Awareness Day on April 10 and National Women and Girls HIV/AIDS Awareness Day on March 10 — recognize groups that are underrepresented in HIV prevention and care.

By spreading the word on these days, you can take a small step to overcome HIV inequalities. One myHIVteam member said, “I put each of these in my calendar to remind me of each date.”

Learn how NBA All-Star legend Earvin “Magic” Johnson has helped raise awareness and fight stigma around HIV/AIDS.

2. Educate Yourself About HIV

Knowledge is power when it comes to advocating for yourself while living with HIV. When asked about the best tool to combat HIV stigma, one myHIVteam member said, “EDUCATION! There are a lot of uneducated people out there. People are afraid of what they don't know about.”

Educate yourself about the virus, how it is transmitted, HIV treatment options, and the latest advancements in medical research. Understand the impact of HIV on your body, the importance of adherence to medication, and how to manage potential side effects. According to the CDC, here are some key facts to know:

  • HIV transmission — HIV can be spread through the exchange of fluids such as semen, blood, and breast milk. Higher-risk activities for HIV transmission include anal sex, vaginal sex, and sharing needles or equipment when using injectable drugs. HIV is not spread through saliva, skin contact, or mucus. Very rarely, it can be spread through oral sex.
  • HIV treatment — Antiretroviral therapy (ART) is a combination of medications that reduces HIV’s impact on your immune system. ART must be taken exactly as prescribed, even when you are feeling healthy. While ART cannot cure HIV, people who take ART every day can live long and healthy lives. With regular use of ART, your viral load may become undetectable, which prevents you from transmitting HIV to others through sexual contact.
  • Undetectable equals untransmittable (U = U) — When there are so few copies of the virus in your blood that they can’t be detected on a viral load test, you will not be able to transmit the virus to anyone else through sexual activity. This emphasizes the importance of adhering to your treatment and seeking regular medical care.

By being informed, you can make better decisions about your health and confidently engage in conversations with health care providers to ensure you receive the best possible care.

3. Build a Support Network

Living with HIV can be emotionally challenging, but you don’t have to face it alone. Surround yourself with a strong support network of friends, family, or support groups who understand and respect your journey.

One myHIVteam member asked, “Is your genetically related family the family that you consider supportive and valuable, or have you created a family of your own outside?”

It may take a while to build a strong support network, but having people who know your HIV status and support you can help you advocate for yourself during difficult moments.

You can connect with other individuals living with HIV to share experiences, insights, and advice on myHIVteam. These connections can provide emotional support, reduce loneliness, and empower you to speak up for your health needs.

Additionally, you may consider seeking professional counseling or therapy to address any mental health concerns. A therapist or counselor can help you overcome the mental and emotional challenges of living with a chronic health condition such as HIV.

4. Communicate Effectively With Health Care Providers

Establishing open and honest communication with your health care providers is essential for your well-being and self-advocacy. Sometimes, in rushed clinical settings, it can be hard to make your voice heard. Be prepared and proactive in discussing your treatment options, side effects, and any concerns or questions you may have with your doctor. Remember, you are an active participant in your care, and your voice matters.

If you feel unheard or dismissed by a doctor, consider seeking a second opinion or finding a health care provider who understands and respects your needs. You can also talk with your local pharmacist, who will be able to answer questions about side effects or tell you which medicines can and cannot be taken together. HIV is a lifelong condition that requires long-term medical care, so it is essential to build a medical team who respects you and makes you feel seen.

5. Recognize Stigma

“Stigma” is a term for the negative attitudes and false beliefs of people who are prejudiced against another group of people. Stigma surrounding HIV can be a significant barrier to self-advocacy and accessing appropriate care. It is essential to challenge and combat HIV-related stigma in your daily life. Many people living with HIV also experience internalized stigma, also called self-stigma. Stigma from yourself and from others can prevent you from accessing necessary HIV services or using strategies to prevent the spread of HIV.

If you feel comfortable, share your story with others to humanize the experience of living with HIV and dispel misconceptions. Participate in events like National Latinx AIDS Awareness Day, National Black HIV/AIDS Awareness Day, or Zero HIV Stigma Day to raise awareness, educate your community, and advocate for equal rights and treatment for all individuals living with HIV. By standing up against HIV stigma, you contribute to a more supportive and inclusive society.

6. Take Care of Your Overall Health

Living with HIV requires a holistic approach to health care. If you’re facing uncontrolled HIV or other health issues, it can be hard to advocate for yourself.

There are many ways you can take care of your physical, mental, and emotional well-being. Try your best not to miss any doses of the antiretroviral medication your doctor prescribes. This will help suppress the virus and protect your immune system. Adopt a healthy lifestyle by eating a balanced diet, engaging in regular exercise, and getting enough sleep. Manage stress through relaxation, meditation, or self-care activities you enjoy. Prioritizing your overall health will empower you to lead a fulfilling life.

As you celebrate HIV awareness days, remember that small actions can lead to meaningful change, both in our lives and within our communities.

Talk With Others Who Understand

On myHIVteam, the social network for people with HIV and their loved ones, more than 41,000 members come together to ask questions, give advice, and share their stories with others who understand life with HIV.

How are you observing HIV awareness days this year? What advice do you have for others living with HIV to advocate for their health and wellness? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Updated on July 10, 2024

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Marie Dorsey, Pharm.D., BCPS, AAHIVP is currently a clinical pharmacist at Bridgewell Medical, specializing in medication therapy management and holds a certification as an HIV pharmacist through the American Academy of HIV Medicine. Learn more about her here.
Scarlett Bergam, M.P.H. is a medical student at George Washington University and a former Fulbright research scholar in Durban, South Africa. Learn more about her here.

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