The short answer is that a combination of cost, stigma, racial inequity, provider ignorance, and now devastating funding cuts have kept PrEP — a medication that is nearly 99 percent effective at preventing HIV infection — out of the hands of millions who desperately need it. In Nigeria alone, the number of people using PrEP plummeted from 390,000 in 2024 to just 7,000 in 2025 after the Trump administration slashed PEPFAR funding, a 98 percent decline that public health experts describe as catastrophic. Despite some progress — 591,475 people were using PrEP in the United States as of 2024, a 17 percent increase over the prior year — the gap between who needs this medication and who actually receives it remains enormous. The national PrEP-to-Need Ratio stood at 15.6 in 2024, meaning roughly 15 to 16 PrEP users per new HIV infection. That sounds encouraging until you realize the country still recorded approximately 31,800 new HIV infections in 2025.
Globally, the picture is far worse: UNAIDS set a target of 21.2 million people initiating or continuing PrEP by 2025, and only about 16 percent of that goal has been reached. This article examines the barriers driving this failure, the populations hit hardest, the policy decisions making things worse, and what the future of HIV prevention might look like if we can get out of our own way. For readers of a brain health and dementia care site, this may seem like an unexpected topic. But HIV has well-documented neurological consequences, including HIV-associated neurocognitive disorder, and preventing infection is preventing cognitive decline. The connection between infectious disease, brain health, and public policy is more direct than most people realize.
Table of Contents
- Why Are So Few People Who Need PrEP for HIV Actually Getting It?
- The Racial Disparity in PrEP Access Is Staggering
- PEPFAR Funding Cuts Are Reversing Decades of Progress Worldwide
- How to Actually Access PrEP — Costs, Options, and Tradeoffs
- Stigma Remains the Invisible Barrier That Policy Cannot Easily Fix
- HIV and the Brain — Why a Dementia Care Audience Should Pay Attention
- What the Future of HIV Prevention Could Look Like
- Conclusion
- Frequently Asked Questions
Why Are So Few People Who Need PrEP for HIV Actually Getting It?
The barriers stack on top of each other. Start with awareness: PrEP remains far less well-known than other preventive medications like birth control, particularly among women and communities in the South. Then add cost. Research has shown that increasing out-of-pocket expenses from zero dollars to just ten dollars doubled the rate of unfilled PrEP prescriptions. That is not a typo — a ten-dollar copay was enough to cut adherence in half. For newer injectable options like cabotegravir, marketed as Apretude, the price tag is substantially higher than oral PrEP, putting it even further out of reach for uninsured or underinsured patients. Then there is the provider problem.
Many healthcare professionals simply do not know how to prescribe PrEP or are unfamiliar with current guidelines. A patient who musters the courage to ask about hiv prevention may encounter a doctor who has never written a PrEP prescription and does not know where to start. Compare this to statins or blood pressure medications, where prescribing protocols are second nature to virtually every primary care physician. PrEP has been available since 2012, yet it still occupies a specialist’s niche in too many clinics. Structural barriers round out the picture. Racial and ethnic minorities are disproportionately uninsured and face obstacles including lack of transportation, inability to take time off work, housing instability, and outright discrimination in healthcare settings. These are not abstract policy concerns — they are the daily reality for people in the communities most affected by HIV.
The Racial Disparity in PrEP Access Is Staggering
Black individuals in the United States experience new HIV infection rates seven times higher than their White counterparts. Yet in 2023, Black Americans accounted for only 14 percent of PrEP users nationwide. That disparity is not a gap — it is a chasm, and it widens depending on where you look. In the U.S. South, Black individuals made up 48 percent of new HIV diagnoses but only 21 percent of PrEP users. In the Midwest, the imbalance was even more grotesque: 48 percent of diagnoses, 12 percent of PrEP users.
These numbers reflect decades of systemic failure. Black communities have historically been underserved by healthcare systems, and the legacy of medical mistrust — rooted in real abuses like the Tuskegee syphilis study — makes outreach more complicated. However, if public health officials treat mistrust as an excuse rather than a challenge to be addressed through genuine community partnership, nothing will change. Programs that embed PrEP access within trusted community organizations, rather than expecting patients to navigate hostile or unfamiliar clinical systems, have shown more promise. It is worth noting a limitation here: even well-funded outreach programs cannot overcome the structural issues of poverty, lack of insurance, and geographic isolation on their own. A person living in rural Mississippi who knows about PrEP and wants it may still face a two-hour drive to the nearest prescriber, time off work they cannot afford, and a copay that breaks their budget. Awareness campaigns without structural reform are necessary but insufficient.
PEPFAR Funding Cuts Are Reversing Decades of Progress Worldwide
The President’s Emergency Plan for AIDS Relief, known as PEPFAR, funded over 90 percent of PrEP users worldwide. When the Trump administration cut that funding, the consequences were immediate and severe. Nigeria’s PrEP program collapsed from 390,000 users in 2024 to 7,000 in 2025. Uganda saw a 70 percent drop. Malawi lost 75 percent of its PrEP users. These are not gradual declines — they are the public health equivalent of pulling a plug.
To put this in perspective, globally only about 3.5 million people either initiated or continued PrEP during 2023, with CDC-supported programs accounting for roughly 856,816 of those initiations. When the largest funder of global HIV prevention withdraws support, there is no backup system waiting in the wings. A new study from AIDSVu forecasts a surge in preventable HIV infections and increased medical costs if PrEP access continues to be reduced, even within the United States. The ripple effects extend beyond HIV. When prevention infrastructure crumbles, the people who depended on it do not simply wait for funding to return. They become infected, they transmit the virus to others, and they develop complications — including the neurocognitive effects that are directly relevant to brain health. Every dollar cut from prevention will cost multiples in treatment, care, and lost human potential.
How to Actually Access PrEP — Costs, Options, and Tradeoffs
For individuals in the United States, there are currently two main PrEP options: daily oral PrEP, typically tenofovir-based pills, and long-acting injectable PrEP using cabotegravir, which is administered every two months. The oral version is available as a generic and can be obtained for free or at very low cost through programs like Ready, Set, PrEP and manufacturer assistance programs. The injectable version offers the advantage of not requiring daily pill adherence but comes at a substantially higher price point and requires regular clinic visits for injections. The tradeoff is real. Daily oral PrEP demands consistent adherence — miss enough doses and protection drops significantly.
Injectable PrEP solves the adherence problem but creates an access problem, since you need a healthcare provider and an appointment every eight weeks. For someone with stable housing, insurance, and a nearby clinic, the injectable may be ideal. For someone without those privileges, the daily pill with a free prescription program may be more practical, even if adherence is harder to maintain. The CDC is currently providing up to 210 million dollars over five years, through 2026, to nearly 100 community-based organizations to boost PrEP referrals. These efforts focus specifically on Black, Hispanic and Latino, gay and bisexual men, transgender women, and people who inject drugs. If you or someone you know falls into one of these groups, these community organizations may be the most direct path to getting PrEP without navigating the traditional healthcare system.
Stigma Remains the Invisible Barrier That Policy Cannot Easily Fix
You can make PrEP free, available at every pharmacy, and backed by the best outreach campaign ever designed, and stigma will still keep people away. HIV-related stigma operates on multiple levels: internalized shame about sexual behavior or drug use, fear of being seen at an HIV clinic, worry that a PrEP prescription on an insurance statement will out someone to family members, and in many countries, actual criminal penalties for the behaviors that put people at risk. This is a limitation that no amount of funding alone can solve. In countries where homosexuality is criminalized, asking men who have sex with men to walk into a clinic and request HIV prevention medication is asking them to risk arrest. Even in the United States, where legal barriers are fewer, social stigma in conservative communities can be powerful enough to override a person’s desire to protect their own health.
Healthcare providers themselves sometimes contribute to the problem — studies have documented judgmental attitudes from clinicians toward patients requesting PrEP, particularly young Black men and transgender women. Addressing stigma requires sustained, culturally informed work that goes far beyond a public service announcement. It means training healthcare workers not just in PrEP prescribing guidelines but in non-judgmental patient interaction. It means supporting community health workers who share the lived experience of the populations they serve. And it means being honest that this work is slow, difficult, and does not produce the kind of dramatic statistics that attract political attention or funding.
HIV and the Brain — Why a Dementia Care Audience Should Pay Attention
HIV crosses the blood-brain barrier and can establish reservoirs in the central nervous system even in people on antiretroviral therapy. HIV-associated neurocognitive disorder affects a significant percentage of people living with HIV and ranges from subtle cognitive slowing to frank dementia. Prevention of HIV infection is, by extension, prevention of a known cause of cognitive impairment and neurodegeneration.
For caregivers and families already navigating dementia, the intersection is worth understanding. An older adult newly diagnosed with HIV — and new diagnoses among people over 50 are not rare — faces compounded cognitive risks. Advocating for PrEP access in aging populations, particularly those with risk factors, is a legitimate and underappreciated aspect of brain health advocacy.
What the Future of HIV Prevention Could Look Like
The pipeline offers some hope. Lenacapavir, a long-acting agent that could be administered every six months, is in development and has shown remarkable efficacy in trials. If approved and made affordable, a twice-yearly injection could transform PrEP adherence and uptake. But affordability is the operative word — access and cost concerns are already plaguing the existing injectable option, and middle-income countries where HIV burden is highest may be priced out entirely.
The next few years will be decisive. Either the global community recommits to the infrastructure that was beginning to work — community-based organizations, funded prevention programs, affordable medication — or the gains of the past decade will erode. The 16 percent progress toward the UNAIDS target is not a foundation to build on if the foundation itself is being dismantled. For anyone who cares about brain health, public health, or basic human decency, the PrEP access crisis deserves attention and action now, not after the preventable infections have already occurred.
Conclusion
PrEP works. That has never been the question. The question has always been whether the systems, policies, and social structures surrounding this medication will allow it to reach the people who need it most. Right now, the answer is a resounding no — not for the Black communities bearing disproportionate HIV burden in the American South, not for the millions in sub-Saharan Africa who lost access overnight when PEPFAR funding was cut, and not for the people in every community who remain unaware that a pill or injection could protect them.
The path forward requires action on every front simultaneously: eliminating cost barriers, training providers, funding community organizations, fighting stigma, and restoring international prevention programs. For those concerned with brain health and dementia prevention, add HIV prevention to your advocacy. The virus does not stop at the immune system — it reaches the brain, and every infection prevented is cognitive decline averted. The tools exist. The failure is in delivery.
Frequently Asked Questions
What is PrEP and how effective is it at preventing HIV?
PrEP stands for pre-exposure prophylaxis. It is a medication taken by HIV-negative individuals to prevent infection. When taken consistently, oral PrEP reduces the risk of getting HIV from sex by about 99 percent. Injectable PrEP with cabotegravir, given every two months, has shown comparable or superior efficacy in clinical trials.
How much does PrEP cost without insurance?
Generic oral PrEP can be obtained for free through programs like Ready, Set, PrEP for uninsured individuals. However, research shows that even a ten-dollar copay doubled the rate of unfilled prescriptions. Injectable PrEP with cabotegravir is substantially more expensive than oral options, and cost remains a significant barrier to access.
Why are Black Americans disproportionately affected by the PrEP access gap?
Black individuals experience HIV infection rates seven times higher than White individuals but made up only 14 percent of PrEP users in 2023. Contributing factors include higher rates of being uninsured, historical medical mistrust, geographic concentration in Southern states with fewer healthcare resources, and systemic barriers like lack of transportation and workplace flexibility.
What happened to global PrEP programs after PEPFAR funding cuts?
PEPFAR funded over 90 percent of PrEP users worldwide. After funding cuts, Nigeria’s PrEP users dropped 98 percent from 390,000 to 7,000. Uganda saw a 70 percent decline and Malawi a 75 percent decline. Experts forecast a surge in preventable HIV infections as a result.
Can HIV cause dementia or cognitive problems?
Yes. HIV can cross the blood-brain barrier and cause HIV-associated neurocognitive disorder, which ranges from mild cognitive impairment to severe dementia. This can occur even in people receiving antiretroviral therapy, making prevention of initial infection an important aspect of long-term brain health.
Are there longer-acting PrEP options coming in the future?
Lenacapavir, a long-acting agent given every six months, is in the development pipeline and has shown strong efficacy in clinical trials. If approved and made affordable, it could significantly improve adherence. However, cost and access in lower-income countries remain major concerns.
