Support For College Students Living With HIV
By Staff Writers
Published on September 21, 2021
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Staying Emotionally & Physically Healthy While in School & Beyond
Students living with HIV might have many concerns about embarking on college life. Will they be treated differently? Will they be stigmatized or discriminated against? Aspiring students will be happy to learn that they shouldn't be treated any differently than anyone else on their college campus. Modern medical treatments mean college students with HIV can enjoy the same activities that all other college students. They can also rest assured they will have access to quality health care and that their rights and privacy will be protected. This guide will provide a background to HIV and explain some of the considerations to keep in mind when attending college as a student living with HIV.
HIV: Helping Students Understand the Basics
When it comes to all matters concerning health, understanding the basics is where it all begins. Here's what students need to know about HIV.
What Is HIV?
HIV stands for Human Immunodeficiency Virus and refers to an infection involving the body's immune system. Specifically, HIV attacks the T cells, which play a major part in helping the body fight off infections. If the HIV infection is not treated, the body's immune system diminishes to the point of being unable to defend itself against opportunistic infections and even common infections, such as the flu or pneumonia. In essence, HIV renders the body unable to protect itself.
How Is HIV Different from AIDS?
The first stage of HIV is the Acute HIV Infection Stage, which occurs about one month after infection. During Stage 1, an HIV-infected individual may exhibit flu-like symptoms and is very contagious.
Stage 2 of HIV is the Clinical Latency stage. At this point, the individual may appear and feel perfectly normal. This is deceiving, however, because they are still contagious, and the HIV virus is slowly destroying the body's immune system. Stage 2 can last anywhere from a few years to several decades, depending on the strength of the immune system and any treatments the person may be receiving.
Stage 3 of an HIV infection was once known as AIDS, which stands for Acquired Immunodeficiency Syndrome. In recent years, many clinicians have moved away from the term “AIDS” and now refer to it as “advanced HIV disease.” At that point, the HIV virus has destroyed so much of the body's immune system that the opportunistic infections begin. However, it's important to remember that with aggressive treatment, some individuals in the third stage of HIV can recover from the opportunistic infections, bolster their immune system and continue living a healthy life.
How Is HIV Transmitted?
HIV is not transmitted through the air or water, nor can it be transmitted by sharing food, toilets or drinks. HIV is not transmitted by pets or mosquitos or through sweat, tears or saliva. However, HIV can be transmitted by certain bodily fluids: blood, semen, vaginal fluids, pre-seminal fluids, rectal fluids and breast milk. When any of these fluids come into direct contact with the bloodstream or mucous membranes, an infection can occur. Mucous membranes are found in the vagina, penis, mouth and rectum.
Why Should College Students Care about HIV?
The college years can be a time for experimentation, both sexually and with illicit substances, and college students are at especially high risk for contracting HIV. HIV can be passed through vaginal or anal sex. There is no cure for HIV but college students have many options for preventing HIV.
Sexually active individuals can reduce the chances of transmitting or receiving the HIV virus through the use of barrier methods such as the proper use of a latex condom or dental dam. But condoms may break or be used improperly, so the only absolute method of avoiding an HIV infection through sex is to avoid any sexual activity in which bodily fluids are involved.
Sharing needles or syringes can also transmit HIV. In certain situations, the virus can live in a needle for over a month. When an infected needle is used by another individual, HIV can come into direct contact with the bloodstream, potentially passing along the infection.
Given how HIV is typically transmitted, a student who chooses to abstain from sex and drugs has practically zero risk of getting HIV in college. This means they have no reason to worry about an HIV positive classmate, roommate or professor transmitting HIV to them.
Living with HIV in College
A student's HIV positive status is private medical information. Therefore, the student is not required to divulge this to get college admission, register for a class or participate in a school activity. However, in certain situations, someone who is HIV positive has a moral and perhaps even legal obligation to notify another. This situation most commonly applies to sexual partners.
From a legal point of view, most states have laws that make it a crime to knowingly expose another individual to HIV or AIDS without first disclosing an HIV or AIDS status. This commonly arises in situations where an HIV positive person is about to have sex with someone who is HIV negative. This requirement may exist when engaging in safer sex practices and even if the HIV positive person's viral load is so small that transmission is unlikely.
Even if disclosure is not legally required, anyone who is HIV positive and is in a position where they could transmit it to another person should either avoid that situation or disclose his or her HIV/AIDS status first. While safer sex practices lower the risk of transmission, there is still a risk, and the other person deserves to make an informed decision about accepting that risk.
To learn about state laws concerning HIV disclosure, check out the Centers for Disease Control and Prevention's State HIV Laws website. More information about how to have a sexual relationship when one partner is HIV positive can be found at WebMD's “Sexual Relationships When You're HIV-Positive” page.
If you find yourself in a situation where you think you need to inform another individual about your HIV status, consider the following strategies.
- Dating partners*. Informing a dating partner about HIV status can be tricky. Expect several questions, and be prepared to hear some questions that may come from a place of ignorance or misunderstanding. Open communication about anything concerning sex, including HIV status, should always be seen as a healthy part of an intimate relationship.
- Professors or administrators. There's no legal or ethical reason you should have to disclose your HIV status to a professor or school administrator. In the event of an extended absence, simply letting them know there is a medical issue is sufficient. However, should you choose to disclose your HIV positive status and feel discriminated based on that disclosure, you may have certain legal options available.
* In some places, disclosure of HIV status to sexual partners is required by law. Some states also require that HIV status be reported to those who might be at risk, such as previous sexual partners – in this case, a third party can reveal the information, such as a nurse or caseworker.
Facing Discrimination with HIV
The majority of those who learn of a student's HIV status are going to treat them exactly the same as they would otherwise. Unfortunately, there may be some who don't. The truth is that a student with HIV may find themselves encountering discrimination while in college. This can include being excluded from a social event or kept out of a particular class or activity. Depending on the discrimination, legal action may be possible and warranted.
Title II of the Americans with Disabilities Act of 1990 (ADA) makes discrimination illegal on the basis of a disability by any public entity. Section 504 of the Rehabilitation Act of 1973 prohibits discrimination on the basis of a disability by any program that receives federal funding. Federal law recognizes AIDS and HIV as a disability, and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) provides privacy protection concerning medical conditions.
Given these laws, students with HIV may not be discriminated against by the school. This bar on discrimination also applies when students choose to enter a particular major or area of study, even one that could arguably put the health of others or themselves at risk, such as nursing. Many states have laws that require health care workers to either not perform certain procedures (invasive in nature) or to advise their patient of their status before the procedure. A student should not have to disclose HIV status for acceptance into a school or programs, however.
To learn more about protections against discrimination, students are encouraged to visit the US Department of Education's Office of Civil Rights, which is tasked with protecting students against discrimination on the basis of their disability. The Office of Civil Rights also has a great FAQ section to further explain a student's right against disability discrimination. To gain a better understanding of the federal laws that protect a student's civil rights, please read the Civil Rights section of HIV.gov.
Accessing Medical Care with HIV
HIV is no longer the life-threatening disease it used to be. A number of antiretroviral treatments are available that can drastically extend the lifespan of an individual with HIV. antiretroviral treatments can turn an HIV infection into a chronic disease and an individual can live a normal life span. It's very important to regularly see a physician so they can monitor your HIV and help maintain health and wellness.
Another consideration is access to necessary medications. Antiretroviral medications may not be readily available at every pharmacy or medical dispensary. The pharmacy closest to the student's school may be able to have the necessary medications delivered, but students must confirm that the pharmacy has this ability and can do so consistently. Antiretroviral medications require strict adherence, so there must be no interruption in treatment.
Prospective college students who want to find HIV care providers in a particular area can use the Centers for Disease Control and Prevention's Locate a Provider tool.
The Importance of Insurance
Most colleges require students to have health insurance, and many offer policies to their students. However, the health insurance industry is in flux right now, with many individuals uncertain about the future of their coverage. Even if they continue to receive the same coverage, each year could bring cost increases in the premiums paid. For now, the Affordable Care Act ensures that insured students living with HIV and other chronic conditions have access to care, even if it's a pre-existing condition. This includes care crucial for people with HIV including prescription drug services, hospital inpatient care, lab tests, and other services for any patient living with a chronic disease. This mandate includes students insured through a school-offered program.
For those living with HIV, maintaining health insurance without a lapse in coverage is extremely important because:
- Someone with HIV will need consistent medical care for the rest of their lives. Regular visits to the primary care physician and the doctor specializing in HIV and AIDS will need to continue while in college.
- The high cost of antiretroviral medications would cost a student between $500 and $2,000 for just 30 tablets if they didn't have insurance. Many antiretroviral medications need to be taken every day and some patients have to take multiple types of drugs each day.
Those who are uninsured or underinsured can turn to the Ryan White HIV/AIDS program, which provides medical care and support services to those living with HIV. About 52 percent of all people living with HIV in the United States take advantage of the variety of services offered by the organization. The AIDS Drug Assistance Program is designed to help those who have trouble paying for their required antiretroviral medications. Additionally, students who are self-supporting may qualify for other programs such as Medicaid.
Learn More About Health Insurance for College Students
HIV & Maintaining Health at College
The common advice given to college students to stay healthy, such as eating a well-balanced diet, getting plenty of exercise, finding ways to reduce stress and getting plenty of sleep, is important for everyone, but it's just as important for those living with HIV.
Another way to maintain health is to stay properly vaccinated. Among some of the most important vaccines to get are those against HPV, hepatitis A, hepatitis B and meningitis. Most people who are on treatment for HIV have a healthy immune system; however, it's always a good idea to check with the doctor before getting a live-virus vaccine.
HIV Support & Awareness
With so much misinformation present on college campuses concerning HIV, education is extremely important. One recent study that asked college participants about their general knowledge of HIV, such as how it can be transmitted between people, indicated that many people are still uninformed: Over 8 percent said HIV could not be transmitted through semen, 4 percent believed HIV could not have the same effect on people from all social, economic and ethnic backgrounds and 44 percent believed no treatments were available for HIV.
While most students know that using condoms during sex can reduce the risk of getting HIV, a large percentage do not use barrier protections. In one survey of just over 704 college participants, 696 agreed that using condoms during sex provided benefits. However, only 358 stated they used condoms consistently during sexual encounters. Nineteen percent believe that using a condom during sex was not worth the trouble.
Awareness and education campaigns make a positive difference for two reasons. First, they explain how HIV can be transmitted and offer steps college students can take to reduce the risk of infection, such as practicing safer sex. Second, with a better understanding of HIV, students are less likely to stigmatize HIV positive classmates and more likely to treat them with respect.
Increasing Awareness
Increasing awareness of HIV among college students is a major step in eradicating the disease and reducing the stigma associated with it. Many colleges and universities will have their own campus-based organizations, such as James Madison University's Madison HIV/AIDS Alliance. A number of off-campus organizations also exist that provide resources and information for student populations about HIV, includingCampus Prideand theHuman Rights Campaign.
Better Education
Handing out literature and giving brief speeches to incoming freshmen is a common method of battling the misconceptions around HIV. With the ubiquity of social media, posting information on Twitter and Facebook is an effective way to reach a large part of the student population. Finally, students can organize campus events to discuss all issues relating to sexual activity, including sexual health and harm reduction.
Campus Policies
All colleges and universities that receive federal funding have an anti-discrimination policy that treats students and employees with HIV the same as anyone else. Specifically, schools will not test incoming students or employees for HIV, nor will they use an individual's HIV status as criteria for hiring or admission. Schools will also make the same public facilities available to all students, regardless of HIV status. In essence, schools will have policies in place that prohibit any discrimination or disparate treatment of students living with HIV.
Accessible Safety
Many campuses are also taking more tangible approaches to reducing the risk of HIV infection on campus. Many student health centers or organizations will make HIV testing readily available or provide information on how to get testing at little or no cost. Free condoms are also available for students who wish to pick them up from established locations, such as the student health center.
Youth HIV/AIDS: By the Numbers
Teens and young adults comprise a significant portion of new HIV diagnoses in the United States. 22% of all new HIV diagnoses in 2015 were among individuals aged 13 to 24.
The gay and bisexual community continues to be the hardest hit by HIV, with 81% of HIV diagnoses among 13-to 24-year-old gay or bisexual males.
In 2015, 7,084 HIV diagnoses were of individuals aged 20 to 24. This is the second highest number, following the 25- to 29-year age group, which had 7,510 new HIV diagnoses.
The majority of people in college with HIV may not be aware they have it. In 2013, it was estimated that 51% of individuals aged 13 to 24 had no idea they had HIV.
Having HIV may also increase the risk of having another viral infection, such as hepatitis. Of those who have HIV, about 35% will also have hepatitis B or C.
While latex condoms are very effective in reducing the risk of transmitting the HIV virus through intercourse, a large number of those who use condoms don't use them properly. For example, between 13 and 44 percent of condom users started using the condom only after intercourse had begun and between 13 and 19 percent reported condom slippage during use.
In 2015, of those aged 20 to 24, almost 1,300 had their HIV infections advance from Stage 2 HIV to Stage 3.
Forty-three percent of sexually active high school students admitted to not using a condom the last time they had sexual intercourse.
Many teens and young adults fail to treat their HIV infection. Of those aged 13 to 24 who were diagnosed, only 68% received care within one month. This is the lowest percentage of all age groups.Sources: CDC/hiv.gov, LiveScience.com
Scholarships & Grants for Students Living with HIV
Scholarships and grants are available specifically for those who have HIV or AIDS, as well as those who are dedicated to working to help them. Here is a sampling of what's out there.
Helen Veress-Mitchell Scholarship Fund
Sponsored by the Capital City AIDS Fund, this scholarship provides at least $1,500 to individuals living with HIV who seek either a two or four-year college degree and who have a connection to Northern California.
HIV League Scholarship
Available to college students who are HIV positive and have attended, or will attend, at least two consecutive years of postsecondary education. The scholarship amount varies, but in 2016, two winning recipients received $7,000.
Joshua Gomes Memorial Scholarship Fund
Award of $1,000 goes to an individual who has HIV and will attend a two- or four-year university for undergraduate or graduate study. Awards are made based on both financial need and personal merit.
Positive Futures Scholarship
Available to students enrolled full-time at the University of Colorado, this scholarship provides $1,500 per academic year to students whose lives have been affected by HIV.
Scholarships for those who want to help in the HIV community:
AIDS Project Snohomish County
Administered by the Pride Foundation for residents of Snohomish County in Washington State who have either been impacted by HIV or intend to include HIV awareness in their course of study or work.
Pedro Zamora Young Leaders Scholarship
To be eligible for this scholarship, applicants don't need to be HIV positive. Instead, they must demonstrate a commitment to ending the HIV pandemic.
Wozumi Family Scholarship
One of many scholarships also administered by the Pride Foundation, this scholarship is awarded to individuals who are either HIV positive or dedicated to helping those infected receive treatment and find a cure.
HIV Prevention: How to Minimize Your Risk
When it comes to HIV prevention, schools will have their own approach to educating the student population. Most schools will discuss prevention and treatment of HIV and will work to dispel misconceptions associated with HIV. This can include allowing outside or student-run organizations to host awareness and education campaigns about HIV and sexual health. However, some private schools may adjust their sexual health curriculum in a way that aligns with their religious or moral beliefs and teachings.
Testing for HIV
Students who seek HIV testing can get tested by their doctor or through a clinic, perhaps even the health center at their school. These tests can be done anonymously and confidentially. State and federal laws will protect the privacy of this information. With anonymous testing, the student's name and personal information is not attached or linked to the test result. Note that not all testing locations will provide anonymous testing and even the ones that do may still be required to forward positive HIV results to state, local or federal agencies for statistical purposes.
Remember, just because a student gets a negative test, they could still have HIV. This is because there is a period of time following initial infection when medical tests cannot detect the HIV virus. To be absolutely certain of a negative result, they may need to be retested several months later after abstaining from any behaviors that could result in infection.If a student gets a positive test, they should get tested a second time to confirm the initial results. Assuming the second test confirms the first, the student should seek immediate medical care to start treating the HIV infection. With prompt treatment, people diagnosed with HIV can live a long and healthy life.
Positive HIV Test: Next Steps
- See your health care provider. If you do not have one, you can find HIV care fromRyan White HIV/AIDS Program medical providers.
- Reach out to your state'sHIV hotlineto learn about the medical and support services you are eligible to receive. These advocates can help navigate you through the very first hours of your diagnosis and beyond.
Safer Sex
Sexual activity is the single most significant source of HIV infections. In 2015, the CDC reported that of the approximately 39,000 reported HIV diagnoses, about 36,000 came from sexual contact. The only way to completely avoid HIV through sexual contact is to not have sex. Safer sex practices are the next best thing, including use of dental dams or properly-lubricated latex condoms when engaging in intercourse or oral sex. Even though using condoms during vaginal and anal intercourse is very effective, students must be careful to use them properly and consistently.
According to the CDC, those who are at very high risk for HIV can turn to pre-exposure prophylaxis, also known asPrEP. This daily medication can be very useful in preventing HIV as long as taken exactly as prescribed. PrEP reduces the risk of contracting HIV through sexual contact by more than 90 percent, and reduces the risk of contracting HIV through sharing needles by more than 70 percent. When PrEP is combined with the use of condoms and other safer sex measures, the risk drops even further.
For those who might have been exposed to HIV,PEP– post-exposure prophylaxis – is advised. PEP is an antiretroviral medication that should begin no later than 72 hours after possible HIV exposure. The sooner the medication is begun, the better. The 28-day PEP regimen has proven effective at preventing HIV when administered promptly and appropriately, but the efficacy is not yet 100 percent. Contact your doctor immediately if you believe you have been exposed to HIV; he or she can help determine if PEP is right for you.
Not Sharing Needles
Even though the vast majority of new HIV cases come from sexual contact, the CDC reports that about 6 percent of new cases (in 2015) came from injection drug use. Other infections, such as Hepatitis C, can be transmitted through shared needles. Students who engage in drug use should always use a brand new syringe and never share needles and other equipment used to inject. Use a new or disinfected container and a new filter each time you prepare drugs, and use clean water when preparing drugs.
Discussion with an Expert
Alex Garner is currently the Senior Health Innovation Strategist at Hornet, the premier gay social networking app. Hornet is committed to helping men make meaningful connections and have the resources to make informed decisions about their health. Alex has been HIV-positive for over 21 years and has spent 20 years working in HIV and gay men's health.
What are some practical considerations for day-to-day care that college students living with HIV should keep in mind?
For people living with HIV, the vast majority of our time is spent outside of a doctor's office. It's important to go on medications as soon as possible after diagnosis. If you take your medications and achieve an undetectable viral load you can live a long healthy life. You'll visit your doctor a couple of times a year and if sexually active you should get tested and treated for STIs (Sexually Transmitted Infections) every three months. Mental health is an important consideration so it's essential that you find a good support system to help when any challenges arise.
What do students need to know about medical coverage and health care while in college?
The Ryan White program is a federal program that ensures that all people living with HIV can access treatment. The Affordable Care Act also allows you to stay on your parents' insurance until 26 or apply for Medicaid if it's available in your state. You cannot be denied insurance because of your HIV status. The coverage of student health centers varies around the country and for HIV treatment it is a good idea to see an HIV specialist. It's also important to find a doctor you can speak openly and honestly with about your sexuality and sexual activity, free of judgment or stigma.
Anything else you want college students to know?
HIV is just a virus. It's not about assigning blame and it isn't something that happens to bad people. HIV is nothing to be ashamed of. If you are on treatment you can expect to live a normal life span. You can still be a sexually active person if HIV positive. It's your right to explore your sexuality and pursue pleasure and intimacy. If your virus is undetectable it's impossible to transmit the virus. Enjoy your time in college and never let HIV hold you back from anything you want to do.
HIV Resources, Organizations & Advocacy Groups
- AIDS.org – Comprehensive Guide to HIV Testing
Offers detailed information about all aspects of HIV testing including the benefits of knowing, privacy concerns and how it works. - AIDS United
Takes a multi-pronged approach to eradicating HIV in the United States by careful distribution of funding, research, policy making and technical help. - amfAR
Seeks to get rid of HIV by accelerating cutting edge, promising research. - Centers for Disease Control and Prevention – HIV/AIDS
A comprehensive and detailed explanation of HIV, including resources, statistics and health advice. - Avert
This site focuses on a wide variety of topics for those with HIV, including a section on transmission and prevention; a great deal of that focuses on safer sex practices. - The Body
Aims to be the most complete source of online information about HIV, and provides information about treatment options, expert advice and recent developments. - Center for HIV Law and Policy
This is a deep look at the various laws and policies in place to protect those with HIV or AIDS. - ClinicalTrials.gov
Provided by the US National Library of Medicine, this is a database of public and private clinical trials across the globe. - GetTested
A CDC website with a search tool to allow individuals get tested for free. - HIV Equal Online Magazine
A globally syndicated online magazine that shares HIV related news, stories and other forms of multimedia. - GMHC
A major advocate for programs that focus on preventing HIV, including a list of opportunities for individuals to get involved and make a difference. - HIV.gov
An official federal government website providing introductory information about HIV, federal programs to help fight the epidemic, digital tools to learn more about HIV and a list of HIV related events. - HIV Positive!
This online magazine's goal is to help those affected with HIV live the longest and most productive lives possible. - Human Rights Campaign
This focuses on the rights of those who have HIV, including how to stay free from discrimination in the workplace, college campus and beyond. - NAM AidsMap
This comprehensive website from the UK offer resources of everything from testing to antiretroviral drugs to how to handle telling loved ones about HIV status. - NASTAD
A non-profit organization that promotes HIV and hepatitis public health programs in the United States and the entire world. Includes resources on how to find the best insurance and healthcare programs. - Ryan White and Global HIV/AIDS Programs
This service of the Health Resources and Services Administration provides a good starting point for those trying to figure out the healthcare and medical scene. - Sero
An organization that fights to end discrimination and stigma faced by those with HIV. - We > AIDS
Greater Than AIDS offers information about HIV campaigns, trending news topics and background information about PrEP, a pill that is taken daily and can help prevent HIV infection. - What Works in Youth HIV Testing
Facilitates the collaboration of youth-serving providers and agencies to improve their ability to implement and share HIV prevention efforts.
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