For nearly as long as we’ve known about HIV, the U.S. has been creating laws about it. Now, that isn’t always a bad thing: Fighting HIV takes people, money, legal protections, and time—resources that need to be allocated to communities that need them most.
Legislating HIV can result in things like the Ryan White CARE Act and PEPFAR, two landmark pieces of legislation from two different presidents. Both laws have given plenty of resources toward seeing the HIV/AIDS epidemic subside, both stateside and abroad.
However, on the flip side, there can be downsides to HIV-related laws. Take HIV criminalization, which is what happens when lawmakers allow fear of the virus to suppress the rights of others and fuel their political agendas.
The reality is that none of the major wins in U.S. HIV/AIDS policy—and none of the successful efforts to push back against criminalization—would have happened without activists speaking up and demanding that people’s rights are upheld and dollars go where they are needed. Each of these policies is the result of thousands of hours of protests, meetings, lobbying, and organization.
Here are some of the biggest pieces of HIV legislation and HIV-related policies in U.S. history, some of which have changed things for the better and some for the worse.
President’s Emergency Plan for AIDS Relief (PEPFAR)
While George W. Bush may not rank among the most popular presidents of all time, there’s no denying that one of his signature pieces of legislation, the President’s Emergency Plan for AIDS Relief, or PEPFAR, was a major accomplishment of his administration and a major step in the global fight against HIV.
PEPFAR represented the largest commitment by any nation to combat any single disease in world history. First passed in 2003, PEPFAR has since allocated $90 billion to fight HIV/AIDS, as well as tuberculosis and malaria, worldwide.
PEPFAR has five priorities and focus areas:
Adolescent girls and women.
Children living with HIV.
Ensuring human rights of key populations.
Using data to accelerate progress.
Using global partnerships to ensure PEPFAR’s sustainability.
It is credited with changing the trajectory of the global HIV epidemic. By 2017, PEPFAR supported 13.3 million of the 21.7 million people worldwide living with HIV who were on treatment, including 1 million children. As of September 2018, it’s estimated that PEPFAR had:
Subsidized testing for almost 95 million people.
Prevented 2.4 million babies from being born with HIV.
Provided care for more than 6.8 million orphans and vulnerable children.
Supported the training of more than 270,000 new health care workers.
Paid for the antiretroviral treatment of more than 14.6 million people.
Though PEPFAR has been revolutionary in the worldwide fight against AIDS, it is not without its faults and controversies. Given the conservative leanings of Bush and his administration, PEPFAR gave money specifically to programs that emphasized abstinence-only sex education, as well as billboard and radio spots in African countries emphasizing to girls that they should “save themselves” for marriage. And though the Bush administration did not make the Mexico City policy, also known as the "Global Gag Rule," a policy which forbids any foreign non-governmental organization from promoting abortion as a form of family planning, apply to PEPFAR, that has changed, as well. When the Trump administration revived the Mexico City Policy in 2017, they also made it apply to PEPFAR.
PEPFAR also originally had a stipulation known as the anti-prostitution pledge, which required any organizations receiving funding through PEPFAR to not “promote or advocate the legalization or practice of prostitution or sex trafficking.” The Supreme Court struck down that part of the law in 2013.
The Ryan White CARE Act
Passed in 1990, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was named after an Indiana teen who obtained HIV through a blood transfusion. White faced intense discrimination in his Indiana community after his diagnosis, and became a nationally known AIDS advocate who spoke out against stigma. He passed away in 1990 from AIDS-related pneumonia at the age of 18.
Though the bill was fiercely debated on the Senate floor, it passed almost unanimously with bipartisan support by a margin of 94 to 5, four months after White died. The Ryan White CARE Act came along at a low point in the fight against AIDS, when many people were dying and there was not yet effective treatment.
The Ryan White CARE Act—which is often referred to as simply “Ryan White”—provides funding for a host of HIV-related services, including treatment, primary care, support services, and more. It’s especially meant to be a safety net for people living in poverty, those who are uninsured or underinsured, and underserved populations.
Ryan White funding goes to cities, counties, states, and community-based organizations. Its main goal is to improve health outcomes for people living with HIV and reduce transmission of the virus.
To that end, the Ryan White CARE Act is divided into several parts, each representing a different way that organizations and governments can get funds allocated through the program:
Part A funds medical and support services in highly impacted metropolitan areas.
Part B provides grants that go to states and territories to improve HIV care in those areas. Grants under part B can fund everything from medication to dentistry to community-based services, and more. Part B also funds AIDS Drug Assistance Programs (more on those in a moment).
Part C gives money to health clinics, treatment centers, and community-based organizations like AIDS service organizations to offer primary health care to people living with HIV, as well as other support services.
Part D offers grants to organizations and programs specifically catering to women, children, and infants. These funds can go to states, community-based organizations, and faith-based organizations.
Part F funds clinician training and technical assistance. It also funds initiatives that are finding ways to deliver new, innovative care to special populations.
In addition to funds being used to support a range of medical and support services that have been demonstrated to improve a variety of health outcomes for people living with HIV, Ryan White dollars are also used to cover insurance premium and cost sharing expenses for low-income people with insurance coverage.
AIDS Drug Assistance Program (ADAP)
The AIDS Drug Assistance Program (ADAP) provides antiretrovirals and other prescription drugs to low-income people living with HIV who are either uninsured or underinsured. It’s funded under Part B of the Ryan White CARE Act.
ADAPs are run by each state, with money allocated from the federal bill. In 2017 alone, there were more than 238,000 people living with HIV in the U.S. were served by state ADAPs.
ADAPs actually began in 1987, when Congress gave money to help states purchase the only HIV drug available at the time, AZT (Retrovir, zidovudine). However, when Ryan White was approved in 1990, the ADAPs were folded into this legislation.
Americans With Disabilities Act
The Americans With Disabilities Act of 1990, known commonly as the ADA, is one of the most significant pieces of legislation related to health status in U.S. history. Much like the Civil Rights Act of 1964, which prohibited discrimination based on race, sex, gender, religion, or national origin, the ADA prohibited discrimination based on disabilities.
Under the ADA, disabilities include both mental and physical medical conditions, including temporary disabilities. The list includes deafness, blindness, and intellectual disability—as well as many chronic illnesses, including HIV.
At the time of the legislation’s passing, HIV was the third-leading cause of death among all adults in the U.S. While there was some debate on whether to include it, it did become part of the landmark legislation, and afforded many rights to people living with HIV.
The Americans With Disabilities Act Protects Employees Living With HIV
Prior to the ADA, employers could ask employees about their HIV status—and then deny them a job (or fire them from their current job) based on their answer. The ADA allows for people living with HIV to keep their condition private by forbidding employers from asking about a person's HIV status.
That said, there are four situations when employers are permitted to ask about HIV status under the ADA:
If it is engaging in affirmative action for people with disabilities, though the person is not required to respond.
If a person with HIV asks for reasonable accommodation. (More on that in a moment.)
After a job offer has been made, but before employment begins, so long as everyone entering the same job category is asked the same questions.
On the job, if there is objective evidence that a person may be unable to do their job because of their condition. This cannot rely on myths or stereotypes about HIV.
Some employees may volunteer their health status in order to ask for reasonable accommodation, which people are entitled to under the ADA. A reasonable accommodation is some type of change in your work situation that you need because of a disability. That can include altered work/break schedules, changes in supervision methods, accommodations for visual impairments, ergonomic office furniture, unpaid time off, permission to work from home, or reassignment to a vacant position if you can no longer do your job because of your condition.
If you ask your employer for reasonable accommodation, you must first submit documentation from a medical professional. After that, an employer is required to give you reasonable accommodation—though they can potentially have an out if your request involves significant difficulty or expense.
Employers are breaking the law if they deny you a promotion or fire you because of a request for reasonable accommodation.
The Americans With Disabilities Act Applies to Public Accommodations
A public accommodation is a private entity that is in service of the public, which includes restaurants, hotels, theaters, doctor’s offices, hospitals, retail stores, libraries, and private schools. Under the ADA, public accommodations cannot discriminate against people with HIV.
Here are some examples of what constitutes discrimination:
A dentist refusing to treat anybody who's living with HIV.
A moving company refusing to move the belongings of someone who's living with HIV.
A health club charging extra fees to someone who has HIV, or not allowing them to use a certain accommodation like a sauna.
A day care center refusing admission to a child with HIV.
A funeral home refusing to provide services to a person who died from HIV/AIDS-related complications.
A building owner refusing to lease space to a non-profit organization that serves people living with HIV.
A school refusing to enroll a student once they learn that the student is HIV positive.
A summer camp refusing to allow a child living with HIV to sleep in the same area as other children.
The Americans With Disabilities Act Offers Some Protection From HIV Health Care Discrimination
Health care providers are not required to treat a person who's living with HIV—but they also can't refuse to treat someone simply because of their status. They can, however, refer a person living with HIV to a clinician who is better equipped to care for people with HIV.
The referral must be based on a desire to provide better care for their patient, not based solely on their HIV status.
The Americans With Disabilities Act Is Local, Not Just Federal
The ADA applies to all state and local governments, meaning that:
A public school system can't prohibit a child living with HIV from attending elementary school.
A county hospital can't refuse to treat a person living with HIV.
An emergency medical technician working in a city can't refuse to treat or transport a person living with HIV.
A state-owned nursing home cannot refuse to accept a person living with HIV.
Federal HIV/AIDS Strategy
The National HIV/AIDS Strategy (NHAS)
Initially released in 2010 under Barack Obama’s administration, the National HIV/AIDS Strategy was the first comprehensive federal plan to combat HIV domestically. In 2015, the administration released “The National HIV/AIDS Strategy: Updated to 2020,” which took into account scientific advancements and progress made since 2010.
The strategy has four main goals:
Reduce new infections.
Increase access to care for people living with HIV.
Reduce HIV-related health disparities and inequities.
Achieve a more coordinated response to the epidemic.
When it was updated for 2020, the strategy had 13 indicators of progress:
Increase percentage of people living with HIV in U.S. who know their status to 90%.
Reduce new diagnoses by 25%.
Reduce percentage of gay and bisexual men who engage in high-risk behaviors by 10%.
Increase percentage of newly diagnosed linked to medical care to 85%.
Increase percentage of people with HIV who are in medical care to 90%.
Increase percentage of people with HIV who are virally suppressed to 80%.
Reduce percentage of people with HIV in medical care who are homeless to 5% or below.
Reduce the death rate among people with HIV by at least 33%.
Reduce disparities in rate of new diagnoses by at least 15% among gay and bisexual men, young Black gay and bisexual men, Black women, and people living in the South.
Increase percentage of youth and people who inject drugs who are virally suppressed to 80%.
Increase percentage of transgender women in HIV medical care who are virally suppressed to 90%.
Increase number of adults prescribed pre-exposure prophylaxis (PrEP) by 200%.
Decrease stigma against persons with HIV by 25%.
Ending the HIV Epidemic Plan
During the 2019 State of the Union address, President Donald Trump announced a new version of the federal plan to fight HIV within its borders. The goal of the new plan, called “Ending the HIV Epidemic: A Plan for America,” is to reduce new infections in the U.S. by 75% by 2025 and 90% by 2030.
Phase 1 of the plan will see the federal government focus on specific areas where rates of HIV are highest. From 2020 through 2025, the plan will focus on bringing more resources to fighting the epidemic in regions of the U.S. where more than 50% of new HIV diagnoses occur.
TheBody launched a project, “Eyes on the End,” in which we profile most of the 48 counties, seven states, and two cities selected as part of the initiative, and examine some of the challenges these areas face in taking control over their local HIV epidemic.
The second and third phases of the Ending the HIV Epidemic plan (sometimes abbreviated as EtE) will see more resources allocated to areas outside the 48 counties selected in the first phase to see an even further reduction in infections. In the final phase, the federal government hopes to see the number of new infections go down to fewer than 3,000 per year.
The effort has four key strategies: diagnose, treat, prevent, and respond.
Diagnose: The administration hopes to use the latest diagnostic and advanced automation systems to make HIV testing simple, accessible, and routine. Once diagnosed, people will be immediately connected to care.
Treat: People living with HIV will receive treatment to suppress the virus and halt transmission. The plan also hopes to find people who have ceased treatment or medical care and re-engage them.
Prevent: In December 2019, the Department of Health and Human Services launched “Ready, Set, PrEP,” a nationwide program that gives PrEP at no cost to individuals who qualify, part of a broader initiative to increase the number of people on PrEP. The administration also hopes to see more syringe services programs open to help individuals who use drugs avoid the virus.
Respond: React quickly to potential HIV outbreaks and get prevention and treatment services to those who need them.
HIV Travel Ban
For 22 years, the U.S. did not allow people living with HIV to travel into the country. The legislation, enacted in 1987, was brought to the floor by Jesse Helms, a notoriously bigoted senator from North Carolina, and signed into law by Ronald Reagan. The ban affected many people, including students, refugees, tourists, and potentially adopted children.
Though he promised to lift the ban, President Bill Clinton authorized it again in 1993, and it persisted through the George W. Bush administration.
One famous moment regarding the ban was the 1989 case of HIV-positive Dutch man Hans Paul Verhoef, who was invited to speak at the 11th National Lesbian and Gay Health Conference in San Francisco. While entering the country, customs found AZT in his luggage. Verhoef was denied entry and jailed.
Barack Obama lifted the travel ban in 2010. “If we want to be the global leader in combating HIV/AIDS, we need to act like it,” Obama said at the time. He called the ban a “decision rooted in fear rather than fact.”
Housing Opportunities for Persons With AIDS (HOPWA)
The Housing Opportunities for Persons With AIDS (HOPWA) program is the only federal program that helps people with HIV obtain and remain in a home. HOPWA also gives money to states, local governments, and nonprofit organizations for projects helping low-income people who are living with HIV.
Funds given through HOPWA can be used to:
Acquire, rehabilitate, or construct new housing.
Pay for maintenance costs.
Help people living with HIV pay their rent.
Provide short-term payments to prevent homelessness among people with HIV.
Some HOPWA funds may also be used for medical care and support services.
States get HOPWA funds based on a formula that calculates each state’s burden of AIDS cases. In the 2015 fiscal year, California, Florida, New York, and Texas were the four states given the most money through the HOPWA program.
Even though the U.S. is dealing with both an HIV epidemic and an opioid epidemic, the country has not historically been friendly to syringe-exchange programs.
The idea of syringe exchange is that people who inject drugs can legally go to a place where their used needles will be collected and they’ll be able to receive clean needles for free. It’s a form of harm reduction and has been scientifically validated as an effective way to reduce the spread of HIV in a community.
For those people who inject drugs, or who use syringes to inject prescribed medication, syringe exchange means they don’t have to worry about shared syringes being contaminated with HIV.
Mostly right-wing opponents of syringe-exchange programs argue that they encourage drug use. However, syringe exchanges are also centers that can link people to support services, including addiction treatment, vaccinations, and HIV testing.
Until 2016, the federal government banned allocating any money from its budget to syringe-exchange programs. That ban was partially lifted in 2016, with a major caveat: The funds can be used for the many costly aspects of running a syringe-exchange program, including staff, vans, counseling services, and more. But funds cannot be used to buy actual needles or syringes.
Despite the partial lifting of the federal funding ban, syringe-exchange programs are still banned in 12 states.
President’s Advisory Council on HIV/AIDS (PACHA)
First formed by Bill Clinton’s administration in 1995, the President’s Advisory Council on HIV/AIDS (PACHA) is often composed of state and federal government officials, pharmaceutical executives, and powerful HIV organization leaders. Its purpose is to give advice and recommendations to the federal government regarding its plans to end the epidemic.
Though not usually a group known for garnering headlines, PACHA did just that in 2017, when six members quit in protest of Donald Trump’s health policies. Shortly thereafter, the president fired the remaining councilmembers.
After disbanding the group in 2018, the Trump administration brought it back in 2019 following the announcement of the administration’s Ending the HIV Epidemic plan.
Criminalization of HIV Exposure, Non-Disclosure, and Transmission
Though the specifics differ from state to state, 32 U.S. states currently have laws on the books that either pertain specifically to HIV or enhance prison sentences for people living with HIV. Many of these provisions involve one or more of the following:
Making it illegal to not disclose your HIV status to a sexual or needle-sharing partner.
Making it illegal to expose another person to HIV.
Enhanced sentences for people with HIV who are convicted of completely unrelated crimes, such as solicitation.
Requiring people living with HIV to register as sex offenders.
Violations of confidentiality and privacy rights for people with HIV.
Currently, 19 states require people living with HIV to disclose their status to sexual partners, and 12 require them to disclose their status to needle-sharing partners.
Many of these laws were passed decades ago, during a time of intense, widespread fear about the virus. Those were also times before we fully understood how HIV was transmitted and how to prevent infection. Although that knowledge is now readily available, many laws still criminalize people living with HIV, make them solely responsible for the public’s health, and treat them as inherently threatening simply because they are living with a chronic health condition.
These laws are extremely harmful. Many medical organizations, organizations that advocate for individuals’ rights, and HIV community organizations have come out in opposition to them. For example, the American Academy of HIV Medicine has said it is opposed to laws that “create disproportionate penalties” for non-disclosure, exposure, or transmission of HIV.
“We support non-punitive prevention approaches to HIV centered on current scientific understanding and evidence-based research,” a statement on the organization’s website reads.
There have been successful efforts to repeal or reduce HIV criminalization laws in recent years. Iowa, for instance, partially decriminalized HIV in 2014: According to the state’s new law, a person can still face up to 25 years in prison for intentionally trying to infect another person—but if the person takes “practical measures” to prevent transmission, they are exempt from prosecution.
The Affordable Care Act
Historically, people with HIV—like many people living with a chronic illness—have had trouble obtaining private health insurance. That changed when the Affordable Care Act (ACA), also known as Obamacare, was signed into law by Barack Obama in 2010.
This landmark piece of legislation not only upended the American health care system, it did away with many of the things standing between people with HIV and coverage.
For people living with HIV, two aspects of Obamacare have had the biggest benefit:
Pre-existing conditions: Prior to the ACA, people living with HIV could be denied health insurance or charged significantly higher premiums, leaving some of the people who most needed health coverage unable to obtain it.
Medicaid expansion: Before the ACA, people with HIV were often denied coverage through their state Medicaid programs because they did not meet certain eligibility criteria. Often, states wouldn’t allow a person to qualify for Medicaid unless their HIV diagnosis advanced to an AIDS diagnosis, meaning someone had to be extremely sick before they could get the care they needed. However, under the ACA, states could expand their Medicaid eligibility to include all people with HIV and other chronic, manageable conditions.
After the Affordable Care Act was signed into law in 2010, the percentage of uninsured people with HIV fell to around the same number as the general population (10% versus 13%). Medicaid expansion had a lot to do with this; unfortunately, that expansion still hasn’t taken place in all U.S. states—including some of the states that are hardest hit by HIV in the southern U.S.
“HIV Criminalization in the United States: A Sourcebook on State and Federal HIV Criminal Law and Practice, The Center for HIV Law and Policy (updated through Sept. 2019),” Center for HIV Law & Policy. hivlawandpolicy.org/sourcebook