When HIV, the virus that causes AIDS, was first identified in the 1980s, it was almost a certain death sentence. Over 100,000 Americans died from this new disease in that decade. The idea that there could one day be medicines to prevent infection was a fantasy. Today, these medicines, known as pre-exposure prophylaxis (PrEP), exist, but most people who could benefit from them do not take them. The policies governing these medicines, and the implementation of those policies, are a significant part of the problem. PrEP is highly effective. It reduces the risk of contracting HIV through sexual intercourse by 99% and through drug injections by almost 75% when taken as prescribed. It is estimated that 1.2 million people in the United States could benefit from PrEP. These are people who test negative for HIV, are sexually active with an HIV-positive partner, do not consistently use condoms, or have been diagnosed with a sexually transmitted infection in the last six months. PrEP can also benefit people who inject drugs and share needles or have an injection partner who is HIV-positive. However, in 2022, PrEP was prescribed to fewer than 4 out of 10 people who could benefit. This was an increase compared to 2 out of 10 in 2019, but there is still a long way to go to reach its full potential. The use of PrEP is not uniform. For those who could benefit, 94% of white individuals have received PrEP prescriptions, compared to only 24% of Hispanic individuals and 13% of Black individuals. These statistics are particularly concerning as Black and Hispanic individuals make up 70% of new HIV cases each year. There is also a clear gender difference: in 2022, 41% of men who could benefit from PrEP received a prescription, compared to only 15% of women.
One of the most significant barriers to accessing PrEP is the cost and insurance coverage. A 2022 report from the HIV+Hepatitis Policy Institute estimates that 55% of people taking PrEP have private insurance, and 20% are uninsured. Without insurance, the cost of the medication can be over $20,000 per year, not including mandatory laboratory tests, which can cost another $15,000. But cost should not be a barrier. Uninsured individuals can often access PrEP through copay assistance programs or community clinics. Nationally, 85,000 people receive PrEP at community health centers. Most people with insurance should have coverage for PrEP medications, clinic visits, and necessary laboratory tests to obtain and maintain prescriptions for this medication. The Affordable Care Act requires most insurers to cover preventive care, including PrEP, without copays. A recommendation from the U.S. Preventive Services Task Force (USPSTF) affirmed that PrEP should be covered at no cost to the consumer, and in 2021, the U.S. Department of Labor clarified how rules for free preventive care specifically apply to PrEP. Many states have passed laws guaranteeing that PrEP is available at no cost to consumers.
Even with clear rules in place, many patients are still being charged for PrEP, according to Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “One of the greatest benefits is that we now have coverage and $0 cost-sharing,” Schmid said. “The problem is that it’s not always implemented. Insurers are still charging many people for it.” A report commissioned by consumer representatives to the National Association of Insurance Commissioners (NAIC) showed that health plans often provide incomplete information about coverage for preventive services, including PrEP. Of the six health plans evaluated, half did not list PrEP as a preventive service available without cost-sharing, and only one provided a complete explanation of coverage for all aspects of PrEP. Even when activists fight for the rules to be enforced, they may be at risk. A lawsuit filed in 2020 by a business with religious affiliations in Texas argued that the requirement to cover PrEP without cost-sharing infringed on its constitutional rights to religious freedom. In 2022, a federal judge agreed and questioned the validity of using USPSTF recommendations as the basis for requirements. Although rule changes are not yet effective, the case could go to the U.S. Supreme Court for a final decision. Depending on that decision, insurers and employers may no longer be required to cover PrEP, although they may choose to do so.
Even now, insurers adhering to the no cost-sharing rules for PrEP often still implement other obstacles, such as requiring prior authorizations. Requiring consumers to obtain insurance approvals before the plan pays for PrEP can be legal but goes against the principle of accessible preventive care. Schmid explained that as part of the prior authorization processes, insurers may want to assess the consumer’s HIV risk. But, he says that is something that should be done between the patient and their healthcare provider and not the insurance company. “Our goal is to make it as easy as possible for people who need PrEP to get it,” Schmid said. “If you want to take PrEP, there’s a reason, and you should get it without all these insurer obstacles.” Ironically, he said he often hears that it can be easier to get PrEP for uninsured individuals than those with insurance due to these obstacles.
The federal budget for fiscal year 2024 included nearly $600 million in funding for a comprehensive initiative called Ending the HIV Epidemic (EHE). The funds cover HIV prevention, testing, and treatment. Distributed to hundreds of clinics across the country, it is not a huge amount. The report from the HIV+Hepatitis Policy Institute suggested that appropriately increasing outreach and management would cost over $6 billion over 10 years and prevent nearly 75,000 person-years of HIV and over $2 billion in HIV treatment costs. However, instead of increasing funding, some members of the U.S. Congress are trying to completely eliminate the budget for EHE, an initiative that activists are working to prevent. In addition to more funding, Schmid supports better enforcement of existing rules and more requirements to improve access to PrEP regardless of the type of insurance, including Medicare. Other ways to improve access include analyzing claims to quantify (and reduce) medical insurance barriers, requiring health plans to clearly communicate what consumers are entitled to, and promoting regulations and law enforcement at the state level. Streamlined medical billing would also make it easier for healthcare providers to prescribe PrEP. “PrEP is a commitment,” Schmid said. “You’re taking a medication for a disease you don’t have.” There are many opportunities for federal and state legislators to fulfill that commitment.
Resources
Ready, Set, PrEP
This educational resource was prepared with support from Merck.
