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For Primary Care| Top tips

Top Tips: Managing HIV in Primary Care

Dr Toni Hazell Reviews the Role of Primary Care in the Identification and Treatment of People with HIV, Offering 10 Practical Tips for GPs

Read This Article to Learn More About:
  • the current state of identification and management of HIV in the UK
  • best practice for HIV testing in primary care
  • ways in which primary care practitioners can improve the care of patients with HIV.
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The history of HIV is fascinating: once a stigmatised disease that equated to a death sentence, the condition is now so treatable that clinicians have to think about managing coexisting menopause and frailty of old age. The COVID-19 pandemic gave us a glimpse of how it must have been during the AIDS epidemic of the 1980s, when patients and healthcare professionals were dying from a disease for which there was no test and no treatment. The situation is particularly well illustrated in And the band played on1 and How to survive a plague2, two books I would highly recommend that were written by authors living in San Francisco and New York, respectively, in the early years of HIV.

Regarding the characteristics of HIV infection, here are a few basics to remember:3–8

  • a healthy cluster of differentiation 4 (CD4) count is around 500–1600 cells/mm3
  • significant immunosuppression begins at a CD4 count of approximately 200 cells/mm3
  • in untreated HIV infection, the average drop in CD4 count is 50–70 cells/mm3 per year.
Figure 1 gives an illustration of how CD4 count can develop over the course of HIV infection.

Figure 1: Examples of Fast, Average, and Slow CD4 Progression after HIV Infection

CD4 progression after HIV infection
CD4=cluster of differentiation 4; ARV=antiretroviral

© i-base website. 1.8 How quickly does HIV progress without ART? Reproduced with permission.

Although care for HIV has been revolutionised since the 1980s, early diagnosis remains imperative. A person with a late diagnosis (that is, with a CD4 count at diagnosis of less than 350 cells/mm3) has a tenfold increased risk of dying in the next year compared with someone diagnosed earlier.7,9 Furthermore, if a person’s CD4 count is below 200 cells/mm3 at diagnosis, their lifespan is reduced by an average of 10 years.7,9

General practice plays an important, if overlooked, role in the identification and care of people with HIV. This article provides 10 top tips for primary care practitioners, covering identification, testing of people at risk or with symptoms, associated care, and effective use of clinical systems.

1. Determine the Prevalence of HIV in Your Area and Offer Testing Accordingly

Published in December 2022, the most recent Government report estimated that there were 4400 people with undiagnosed HIV infection in England in 2021,10 a reduction from the estimated 6700 people in 2018.9 For the NHS to reach its aim of zero HIV transmissions by 2030,11 these numbers need to reduce further—after all, someone who is undiagnosed cannot take steps to reduce transmission.

Primary care practitioners in areas of high or extremely high HIV prevalence (in which two or more people per 1000 people aged 15–59 years have been diagnosed as HIV positive) should be offering and recommending an HIV test:12

  • to all new patients (ideally, under a funded enhanced service)
  • when doing blood tests for any other reason, unless the patient has already had an HIV test in the preceding year.
If HIV prevalence is extremely high (five or more people per 1000 people aged 15–59 years have been diagnosed as HIV positive), the British HIV Association and NICE recommend that clinicians should consider offering a test at every consultation.12,13 However, this suggestion seems too impractical and resource-intensive to be implementable in primary care.

Figure 2 outlines the prevalence of HIV across England as of 2017—newer data can be found on the HIV Lens website.6,14

Figure 2: Diagnosed HIV Prevalence in England, 2017 (Per 1000 People Aged 15–59 Years)14

photo of diagnosed HIV prevalence in England 2017
Public Health England. Progress towards ending the HIV epidemic in the United Kingdom: 2018 report. London: PHE, 2018. Available at:
Contains public sector information licensed under the Open Government Licence v3.0.

2. Test, Test, Test

Indicator conditions are conditions that have an associated undiagnosed HIV seroprevalence of greater than one in 1000 and are therefore cause for suspicion of HIV—this is because they usually either share an aetiology or transmission route with HIV, or are a marker of immunosuppression.13 Many indicator conditions, such as unexplained pneumonia, lymphadenopathy, weight loss, fever, and chronic diarrhoea, cervical dysplasia, and subcortical dementia are seen regularly in primary care.13 See Box 1 for a comprehensive list.15,16 All of these conditions should prompt an HIV test.13

Children of HIV-positive mothers should also be tested for HIV unless they have already had a negative test after finishing breastfeeding—a parent’s refusal to allow such a test is a child protection issue.13,17 Other high-risk children should also be tested, such as recent asylum seekers, children born abroad in high-prevalence countries, and ‘looked-after’ children.17

Box 1: HIV Indicator Conditions15,16

AIDS-defining conditions

  • Neoplasms
    • cervical cancer
    • non-Hodgkin lymphoma
    • Kaposi's sarcoma
  • Bacterial infections
    • Mycobacterium tuberculosis, pulmonary or extrapulmonary
    • Mycobacterium avium complex or Mycobacterium kansasii, disseminated or extrapulmonary
    • Mycobacterium, other species or unidentified species, disseminated or extrapulmonary
    • pneumonia, recurrent (two or more episodes in 12 months)
    • Salmonella septicaemia, recurrent
  • Viral infections
    • cytomegalovirus retinitis
    • cytomegalovirus, other (except liver, spleen, glands)
    • herpes simplex, ulcer(s) more than 1 month/bronchitis/pneumonitis
    • progressive multifocal leukoencephalopathy
  • Parasitic infections
    • cerebral toxoplasmosis
    • cryptosporidiosis diarrhoea, more than 1 month
    • isosporiasis, more than 1 month
    • atypical disseminated leishmaniasis
    • reactivation of American trypanosomiasis (meningoencephalitis or myocarditis)
  • Fungal infections
    • pneumocystis pneumonia
    • candidiasis, oesophageal
    • candidiasis, bronchial/tracheal/pulmonary
    • cryptococcosis, extrapulmonary
    • histoplasmosis, disseminated/extrapulmonary
    • coccidioidmyosis, disseminated/extrapulmonary
    • penicilliosis, disseminated
Non-AIDS-defining conditions
  • Sexually transmitted infection
  • Malignant lymphoma
  • Anal cancer/dysplasia
  • Cervical dysplasia
  • Herpes zoster
  • Hepatitis B or C (acute or chronic)
  • Unexplained lymphadenopathy
  • Mononucleosis-like illness
  • Community-acquired pneumonia
  • Unexplained leukocytopenia/thrombocytopenia lasting >4 weeks
  • Seborrhoeic dermatitis/exanthema
  • Peripheral neuropathy
  • Severe or atypical psoriasis
  • Mononeuritis
  • Unexplained weight loss
  • Unexplained oral candidiasis
  • Hepatitis A
  • Unexplained fever
  • Candidaemia
  • Visceral leishmaniasis
  • Primary lung cancer
  • Invasive pneumococcal disease
  • Oral hairy leukoplakia
  • Guillain–Barré syndrome
  • Subcortical dementia
  • Multiple-sclerosis-like disease
  • Unexplained chronic diarrhoea
  • Unexplained chronic renal impairment.
© NICE 2023. HIV infection and AIDS: scenario: established HIV infection. NICE Clinical Knowledge Summary.

© NICE 2023. HIV infection and AIDS: when should I screen for HIV infection? NICE Clinical Knowledge Summary.

All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See for further details.

Window Periods

Some HIV tests are antibody based, and it can take up to 90 days for a person to make enough antibodies to trigger a positive test after they are exposed to infection, depending on the test being used.13,18 Therefore, although it is acceptable for a clinician to offer an HIV test fewer than 90 days after potential infection, the patient must repeat the test after the window period to confirm a negative diagnosis.13,18 Many laboratories now use combined antibody/antigen tests that shorten the window period to as little as 45 days,13 but it is safest to use a standard, recommended window of 90 days—unless the particular test used by the local laboratory is known.

3. Be Vigilant for HIV Seroconversion

HIV seroconversion presents with symptoms that are common presentations in primary care (see Box 2), including fever, malaise, lethargy, and sore throat,18 and it is unrealistic to offer a test to every person who presents with, for example, a sore throat in winter. However, primary care practitioners see maculopapular rashes less often, and such a rash—particularly in combination with a fever or sore throat—should prompt a clinician to discuss recent risk with a patient and offer them a test, as it is especially suggestive of seroconversion.19 Patients diagnosed during seroconversion can start antiretroviral therapy (ART) immediately (sometimes on the day of diagnosis20), and clinicians can discuss transmission with them. This makes it a win for both the patient and public health.

Box 2: Clinical Features of HIV Seroconversion Illness18
  • Clinical features associated with primary HIV infection develop in over 60% of people, can be nonspecific, and include:
    • fever, sore throat, maculopapular rash, malaise, lethargy, arthralgia, myalgia, lymphadenopathy, and oral, genital, or perianal ulcers
    • less commonly, headache, meningitis, cranial nerve palsies, diarrhoea, and weight loss.
© NICE 2023. HIV infection and AIDS: HIV diagnosis in people with symptoms. NICE Clinical Knowledge Summary.

All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See for further details.

4. Record Antiretrovirals in Computer Systems, Even Though They Are Not Prescribed in Primary Care

In primary care, it is good practice to record all long-term drug prescribing in secondary care as ‘hospital issue’ on clinical computer systems. This should allow many systems to automatically identify a patient’s eligibility for vaccinations and therapeutics where appropriate, such as for flu or COVID-19, and—crucially—to flag any interactions between antiretrovirals and other drugs. UK guidance clearly states that diagnoses of HIV should be shared with the patient’s GP, and that the potential harms of nondisclosure should be regularly reviewed when a patient refuses to share this information,20 so clinicians will hopefully know about most of their patients with HIV and be able to do this accordingly. The University of Liverpool’s HIV drug interactions website is a very useful resource to check drug interactions. It is used by HIV consultants and so using it, and documenting this in the notes, is a medicolegally safe thing to do.21

Drug Interactions and Contraception

Drug interactions can be a particular issue for women with HIV who are considering contraception, in which case the relevant Faculty of Sexual & Reproductive Healthcare guidance should be consulted.22 Women taking enzyme-inducing antiretrovirals are likely to be restricted to intrauterine contraception or the depot injection, and should be offered a copper intrauterine device (IUD) if they need emergency contraception, or a double dose of levonorgestrel if this is unacceptable, unsuitable, or unavailable. Use of double dose ulipristal is not recommended and the effectiveness of a single dose of ulipristal compared with a double dose of levonorgestrel is unknown.22 

Leaving aside drug interactions, HIV itself is generally not a contraindication for contraceptives. The only exception to this rule is that the risks associated with insertion of an IUD outweigh the benefits if a person’s CD4 count is below 200 cells/mm3,23 presumably because of pelvic infection risk.

5. Emphasise that People with Well-Treated HIV Cannot Transmit the Disease

The ‘Undetectable=Untransmissible’ (U=U) campaign has emphasised the importance of sharing the information that people with HIV effectively cannot pass on the disease if they:24,25

  • are on ART, with good adherence, and
  • have maintained an undetectable viral load for at least 6 months.
This use of the word ‘cannot’, or other words used elsewhere such as ‘no risk’, ‘zero risk’, and ‘do not transmit’ (rather than alternatives like ‘may not’, ‘probably won’t’, or ‘have a negligible risk of’) is extremely powerful for reducing HIV-related stigma.24,25 This language emphasises the reality that discordant couples who wish to conceive can now have unprotected sex without being reliant on fertility services, and that people with HIV can date without the fear that they may pass on HIV and be prosecuted for it.26,27 Informing patients about U=U may also encourage people who are afraid to find out their HIV status to take a test, or prompt patients to improve their adherence to ART.

6. Understand that Some Patients May Be Taking Pre-Exposure Prophylaxis to Reduce Their Risk of Catching HIV

Pre-exposure prophylaxis (PrEP) is an ART taken by those who are at an increased risk of contracting HIV. PrEP is primarily recommended for:28

  • any individuals having condomless sex with partners who are HIV positive, unless the partner has been on ART for at least 6 months and has a viral load under 200 copies/ml
  • transgender women and men who have sex with men who have had condomless anal sex in the previous 6 months and report ongoing condomless anal sex.
PrEP may also be taken by individuals at ‘medium risk’ of HIV, which is conveyed by multiple factors, such as injecting drugs, high-risk sexual behaviour, risk of sexual exploitation or trafficking, or a recent rectal bacterial sexually transmitted infection (STI).28

PrEP is generally prescribed in sexual health services as part of a care plan that includes risk factor discussion, renal function monitoring, and regular screening for HIV, other STIs, and viral hepatitis.28 If a patient at the practice is taking PrEP, it is good practice to include this in the system as a hospital-issued medication.

Post-exposure Prophylaxis

Post-exposure prophylaxis (PEP)29 may be familiar to some healthcare professionals, who might have taken it after a needlestick injury. It is a month’s worth of antiretrovirals, taken after a risky event (medical or sexual) to reduce the risk of seroconversion to HIV. It is offered during working hours by genito-urinary medicine clinics and occupational health, and out of hours by the emergency department. The first tablet should be taken as soon as possible after the index event: ideally within 24 hours, but certainly no later than 72 hours. If the nature of the risk is uncertain, then PEP is sometimes started but discontinued early if it becomes apparent that the risk was less than first thought. Situations in which PEP may be used include:

  • after unprotected sex when the index partner is of unknown HIV status, or known to be HIV positive but their viral load is unknown
  • after a sharps injury or a mucosal splash from a patient with HIV who does not fit the U=U criteria
  • if needles are shared with a person who is HIV positive and does not fit the U=U criteria.
GPs are sometimes approached by someone who has pricked themselves on an old syringe, for example one found during a litter pick—PEP is not recommended in this situation, as the risk is low.

7. Arrange Annual Cervical Screening for Women with HIV

Women with HIV are at a higher risk of cervical cancer than the general population—they should therefore be offered colposcopy at diagnosis (arranged by their consultant) and annual cervical screening.30 However, these women do not need to continue cervical screening for longer, or start screening earlier, than other women because of their HIV.30 In some areas, an indication of HIV on a request form will lead the screening programme to default to annual recall for a patient. If this is not the case locally, it may be worth investigating whether it can be implemented. Otherwise, this will need to be incorporated into the practice’s own manual recall system.

8. Advise Women Against Breastfeeding, as Vertical Transmission Is Rare but Possible

Around 900 pregnancies in women with HIV are managed each year in the UK, and there were only 13 cases of vertical transmission reported in the period 2020–2021.31,32 More than half of these cases involved complex issues of mental health, safeguarding, insecure housing, or late antenatal booking, with other complications including lack of antenatal care and undisclosed breastfeeding.31 Seroconversion during pregnancy is a significant risk factor for vertical transmission, as routine testing is only done at antenatal booking.33 Therefore, when seeing a pregnant woman, it is good practice for clinicians to consider whether to offer her an HIV test.

Women with HIV in the UK are advised not to breastfeed, even if their viral load is consistently undetectable.34 This is because the principles of U=U only apply to sexual contact, not to breastfeeding. To facilitate this, support should be available in the local area, including financial support for the purchase of formula, and medical support such as cabergoline for suppressing lactation.34 

For women who are very keen to breastfeed, HIV clinics will support this if the woman:34

  • has good adherence to ART
  • has an undetectable viral load, measured monthly.
Feeding should be paused if the mother has cracked nipples, or the mother or baby experiences diarrhoea or vomiting,34 and the mother must understand that, even with ideal care, there is a small risk of transmission.34 Breastfeeding outside of this framework is a child protection issue.

9. Be Aware that Patients with HIV Are at Increased Risk of Frailty and Comorbidities

It is a sign of the success of ART that healthcare practitioners are now concerned about old age and frailty in people with HIV—in the 1980s and 1990s, this was unheard of. Nevertheless, frailty is more prevalent in people with HIV than in age-matched controls,35,36 in part because of ongoing issues related to the toxicity of early ARTs (such as peripheral neuropathy and lipoatrophy) and increased inflammation. In one large cohort study, people with HIV had on average 15.3 fewer years of comorbidity-free life than those without the disease, even though their actual life expectancy was similar.37 Clinicians should therefore be aware that patients with HIV are likely to develop comorbidities earlier than other patients, and have more of them.

10. Involve HIV Consultants, If Needed, to Treat the Menopause Appropriately in Women with HIV

A recent study on HIV and the menopause found that, although 95% of GP respondents were confident managing the menopause, only 46% were confident if a woman has HIV.38 Likewise, management of the menopause is not a standard part of an HIV consultant’s skill set. Thus, women with HIV and menopausal symptoms can be caught between primary and secondary care, with neither service feeling able to start hormone-replacement therapy (HRT). In this study, the reasons given by GPs for their uncertainty included concerns about:38

  • missing an HIV-related diagnosis, including when managing ambiguous menopausal symptoms such as night sweats
  • the risks of commencing HRT in a patient with HIV
  • drug interactions.

In my experience, HIV consultants are approachable and know their patients well; any clinicians who are concerned about starting HRT in a person with HIV could easily contact the patient’s consultant by phone or email, and save them from a frustrating game of ping-pong.


The change in status of HIV from a deadly disease to a condition that can be lived with is arguably one of the greatest medical achievements of the last few decades. As patients with HIV live longer, primary care will be increasingly involved in their care and in managing any associated conditions or frailty. It is therefore vital that clinicians are not afraid of managing this group of patients.