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Exploring the Downsides: What is the downside to PrEP?

5 min read

When taken as prescribed, PrEP is up to 99% effective at preventing HIV from sexual contact. However, potential users must also consider what is the downside to PrEP, including side effects, cost, and the need for strict adherence.

Quick Summary

PrEP's disadvantages include potential side effects, the high cost of medication and monitoring, and the challenge of consistent daily or scheduled dosing. Stigma and a lack of protection against other STIs are also important considerations.

Key Points

  • Side Effects: Mild but frequent initial side effects are common, while rare but serious long-term effects on kidney and bone health require monitoring, especially with older formulations.

  • Adherence Challenges: Consistent, correct dosing is crucial for effectiveness, and forgetting pills or skipping injections can significantly reduce protection against HIV.

  • High Cost & Access: Despite insurance coverage requirements in some regions, significant out-of-pocket costs for medication and monitoring can be a major barrier for many individuals, including the uninsured and underinsured.

  • Regular Monitoring: PrEP use necessitates frequent clinic visits for HIV testing, STI screening, and monitoring of kidney function, which can be time-consuming and costly.

  • No Other STI Protection: PrEP is effective only against HIV, not other sexually transmitted infections, requiring continued use of condoms for broader protection.

  • Stigma and Confidentiality: Users may face stigma or privacy concerns related to taking an HIV prevention medication, which can be a deterrent for some.

  • Drug Interactions: PrEP can interact with certain other medications, requiring careful medical oversight.

In This Article

For millions, Pre-exposure Prophylaxis (PrEP) has revolutionized HIV prevention, offering a powerful tool to reduce the risk of acquiring the virus. For individuals at elevated risk, a daily pill or long-acting injectable can provide significant peace of mind. However, like any medication, PrEP is not without its drawbacks. Understanding these potential downsides is crucial for making an informed decision, managing expectations, and ensuring a successful and safe prevention strategy.

Understanding the Downsides of PrEP

Common and Serious Side Effects

As with any medication, some people experience side effects from PrEP. While many are mild and temporary, some are more serious and require careful monitoring.

Common Side Effects (often diminish over time):

  • Nausea and stomach upset
  • Headaches
  • Fatigue
  • Diarrhea
  • Dizziness

Rare but Serious Side Effects:

  • Kidney Health: Older oral formulations of PrEP, like Truvada (containing tenofovir disoproxil fumarate, or TDF), have been associated with a modest decline in kidney function, especially in people with pre-existing kidney issues or who are over 50. Regular kidney function tests are a standard part of PrEP care. Newer oral formulations like Descovy and injectable PrEP have a much lower risk of affecting kidney health.
  • Bone Mineral Density: A slight decrease in bone mineral density (BMD) has been noted with TDF-based PrEP, particularly in the initial year of use. While this bone loss is generally mild and reversible after stopping the medication, it is a consideration for those with risk factors for osteoporosis. Newer formulations have a significantly lower impact on bones.
  • Hepatitis B Flares: For those with an existing hepatitis B virus (HBV) infection, stopping PrEP abruptly can cause a severe flare-up of the hepatitis B infection. Therefore, individuals with HBV must be closely monitored and should not stop PrEP without a doctor's guidance.
  • Injection Site Reactions: For those using injectable PrEP, injection site reactions like pain, redness, and swelling are possible side effects.

Adherence: A Key Challenge

PrEP's effectiveness is highly dependent on consistent and correct use. This can be a significant barrier for some people, especially those with busy lifestyles or chaotic schedules.

  • Pill Fatigue: Taking a daily pill can be a routine some people struggle to maintain. A missed dose, especially multiple missed doses, can significantly reduce the level of protection against HIV.
  • Inconsistent Use: Forgetting or intentionally skipping doses can leave a person vulnerable. This is particularly problematic with oral PrEP, where drug levels must build up over several days to achieve maximum protection, especially for vaginal sex. The 'on-demand' PrEP regimen for anal sex also requires strict adherence to a schedule around sexual activity, which can remove the spontaneity of sex.
  • Long-Term Commitment: For the injectable PrEP option, while it eliminates the daily pill, it requires regular clinic visits every two months for the injection. For some, this could be a logistical challenge.

The Financial and Logistical Burden

While PrEP access has improved, the associated costs and healthcare requirements can still be a significant deterrent.

  • Cost of Medication: Although many insurance plans are now required to cover PrEP at no or low cost, this is not always the case. High deductibles, co-pays, or lack of insurance can make PrEP financially prohibitive for many. In the US, without insurance or assistance programs, brand-name oral PrEP can cost thousands of dollars per month. The injectable form is also very expensive.
  • Cost of Care: PrEP isn't just a pill or a shot; it's a comprehensive care plan. Regular follow-up appointments, including lab work for HIV testing, STI screening, and kidney function tests, are essential for safety and effectiveness. These visits add up in both time and cost.
  • Legal Challenges: A recent lawsuit challenging the no-cost coverage of PrEP under the Affordable Care Act has created uncertainty about the future of affordable access in the US.

A Prevention Tool, Not an Immunity Shield

It is crucial to remember what PrEP is and isn't. Some people may wrongly perceive PrEP as a magic bullet for HIV prevention, which can lead to risk compensation.

  • No Protection Against Other STIs: PrEP only protects against HIV. It does not prevent other sexually transmitted infections like chlamydia, gonorrhea, syphilis, or hepatitis. Condom use remains vital for preventing these infections.
  • No Pregnancy Prevention: PrEP does not offer protection against unwanted pregnancies.
  • The Risk of Drug Resistance: Taking PrEP when unknowingly HIV-positive can lead to the virus developing resistance to the drugs in PrEP, limiting future treatment options. This is why confirmed HIV-negative status is a prerequisite for starting and continuing PrEP.

Facing Stigma and Privacy Concerns

Despite growing awareness, stigma around PrEP use persists, and some individuals may experience social discomfort or judgment from others.

  • Misunderstanding: Due to its origin as an HIV treatment medication, some people mistakenly assume that those on PrEP are HIV-positive. This can lead to awkward or painful conversations and social judgment.
  • Disclosure Issues: The need for discretion can be a major burden. For some, the necessity of regular clinic visits and managing medication can raise privacy concerns with partners, friends, or family.

Comparison of PrEP Options

Aspect Daily Oral PrEP (Truvada/Descovy) Long-Acting Injectable PrEP (Apretude)
Adherence Requires daily pill-taking; missed doses reduce effectiveness. Requires clinic visits for injections every 2 months.
Onset of Protection 7–21 days of daily use, depending on exposure type. Rapid onset, but with a complex initiation schedule involving oral lead-in and two initial monthly shots.
Cost Widely covered by insurance, but with potential co-pays, deductibles, or high costs for uninsured. Generic options are cheaper. Newer, typically more expensive formulation; insurance coverage can vary.
Side Effects Common: Nausea, headache, fatigue (usually temporary). Rare: Kidney/bone density issues (especially with Truvada). Common: Injection site reactions (pain, swelling). Longer-term side effects are still being studied.
Discretion Taking a daily pill can be private, though discretion around clinic visits and lab work is still necessary. Requires regular, visible clinic visits; however, daily medication management is eliminated.
Monitoring Regular lab work (HIV, STI, kidney function) every 3–6 months. Regular lab work (HIV, STI) every 2 months at the time of injection.

Conclusion

While PrEP represents a landmark achievement in HIV prevention, it is not a perfect solution. The potential downsides—ranging from manageable side effects and the burden of adherence to significant financial and logistical challenges—must be carefully weighed against its proven efficacy. The risk of side effects, while generally low, necessitates consistent medical monitoring. The costs and regular appointments can be a barrier to access and retention in care. Moreover, PrEP does not eliminate the need for safer sex practices to prevent other STIs. By understanding and addressing these challenges, individuals and healthcare providers can work together to ensure that PrEP is used safely and effectively, continuing its critical role in reducing HIV transmission.

Important Considerations for PrEP Users

  • Impact on Specific Health Conditions: PrEP must be used with caution in individuals with certain health conditions, particularly pre-existing kidney disease or chronic hepatitis B. A thorough medical evaluation before starting is essential.
  • Addressing Potential Drug Interactions: PrEP medications can interact with other drugs and supplements. It is crucial to inform your doctor of all other medications you are taking to avoid potential issues.
  • Facing Stigma and Privacy Concerns: For those concerned about the social stigma associated with PrEP, resources and open conversations with healthcare providers can provide support and strategies for managing privacy.
  • Regular Monitoring: Consistent follow-up care is mandatory for PrEP safety and effectiveness. This includes regular HIV testing to ensure negative status and monitoring for potential side effects.

Frequently Asked Questions

Mild side effects such as nausea, headaches, fatigue, and stomach pain are most common, especially during the first few weeks of starting PrEP. These side effects often subside over time as your body adjusts.

Older oral PrEP formulations like Truvada can cause a small, reversible decrease in bone mineral density and may impact kidney function, which is why regular monitoring is necessary. Newer formulations (Descovy, Apretude) have a significantly lower impact.

PrEP is highly effective when taken consistently, but its effectiveness is significantly reduced when doses are missed. Forgetting doses can increase your vulnerability to HIV.

No, PrEP only protects against HIV. It does not prevent other sexually transmitted infections or pregnancy. Condoms must still be used for broader protection.

Regular monitoring, typically every 3-6 months, is required for HIV testing, STI screening, and kidney function checks to ensure the medication is working safely and effectively.

Many insurance plans, including most under the Affordable Care Act, are required to cover PrEP at little to no cost. However, costs can be a barrier for the uninsured or underinsured, and high co-pays or deductibles can be a factor.

Yes, PrEP can interact with certain other medications, including some NSAIDs and anticonvulsants. You should always inform your doctor of all medicines and supplements you are taking.

Regular HIV testing is crucial to ensure you remain HIV-negative. Taking PrEP when you have an undiagnosed HIV infection can lead to drug resistance, limiting future treatment options.

References

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Medical Disclaimer

This content is for informational purposes only and should not replace professional medical advice.