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Non-disclosure of previously known HIV seropositivity in patients “newly” diagnosed with HIV infection
  1. M Natha1,
  2. A Newell1,
  3. M Pakianathan1,2
  1. 1South West London HIV & GUM Clinical Services Network Heath Clinic, Mayday University Hospital, London Road, Thornton Heath, Croydon CR7 7YE, UK
  2. 2Courtyard Clinic, St George’s Hospital, Blackshaw Road, London SW17 0QT, UK
  1. Correspondence to:
 M Natha
 Department of Genitourinary Medicine, Mayday University Hospital, London Road, Thornton Heath, Croydon CR7 7YE, UK;

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We read with interest the letter from Natarajan et al regarding extensive unexpected antiretroviral resistance in an African immigrant patient.1 The failure of HIV positive patients to disclose their status to healthcare workers has previously been documented with adverse clinical outcomes.2

Case reports

In this case series, we present five individuals who had previously been diagnosed with HIV, who then re-presented for HIV antibody testing and subsequent treatment without disclosing their HIV positive status. All cases were of African origin and diagnosed between October 2002 and February 2003.

Case 1

We were alerted to the possibility of a previously known HIV diagnosis in this woman as her mean corpuscular volume (MCV) was raised at 118 fl and she had features suggestive of the lipodystrophy syndrome. This patient finally revealed her previously known HIV diagnosis after a period of discussion with both physician and health adviser. She had extensive antiretroviral resistance and required optimisation of her antiretroviral treatment regimen.

Case 2

This patient revealed her previous diagnosis and antiretroviral treatment history after a period of discussion regarding treatment initiation. She realised that she may have antiretroviral resistance from previous suboptimal drug treatment.

Case 3

This patient revealed her known HIV diagnosis after a prolonged period of discussion. A decision to observe her immunological status was made in view of her apparently “low” viral load and reasonable CD4 count. She had not expected this decision and eventually ran out of drugs. She then revealed her previous history as she was becoming symptomatic and therefore keen to recommence therapy and. Her nadir CD4 count was <100 cells ×106/l.

Case 4

Clinic staff at this centre recognised her from her previous attendances. In addition, her self reported demographics and signature from her previous attendance and most recent attendance matched completely. This patient subsequently transferred her care to a different HIV treatment centre where she subsequently revealed she had taken AZT while in Uganda but still insisted that she had never formally been tested.

Case 5

This patient was diagnosed in the antenatal clinic and was on antiretroviral therapy. She did not disclose this to us and alleged that she was given the medication by her husband for malaria.


Patients may fail to disclose their HIV diagnosis for a variety of reasons. These include fear of discrimination, fear that disclosure may jeopardise their asylum application and also concerns as to how they may be treated. In most cases the reasons are complex and involve many different factors.

Non-disclosure can result in numerous adverse outcomes for the individual.

Possible consequences for the patients include inappropriate clinical decisions owing to failure to recognise pre-existing antiretroviral drug resistance and toxicities, failure to recognise and address relevant social problems, the risk of inappropriate treatment when diagnosed antenatally, and the increased risk of mother to child transmission.

The number of programmes providing antiretroviral therapy in resource poor settings is increasing. Resistance to antiretroviral drugs in sub-Saharan Africa has been documented in several countries.3

Clinical clues to previous HIV diagnoses and antiretroviral drug exposure include haematological (raised MCV) and biochemical (raised lipids). Patients may also have morphological changes such as lipodystrophy and pigmentation. In addition, patients with an inappropriately low viral load and low CD4 count may have been previously thought to have a non-B clade viral subtype. This supposition may not always be accurate. Clinicians meeting such patients should look for other signs of antiretroviral drug exposure.

Therapeutic drug monitoring (TDM) and genotypic resistance testing may also be useful in selected cases. All five of these cases have undergone genotypic resistance testing, three of whom showed extensive multi-class resistance.

In all cases, disclosure occurred after multiple clinic attendances. It is highly probable that other cases of non-disclosure have occurred within this service. Clinicians should consider the possibility of HIV status non-disclosure and previous exposure to antiretrovirals when seeing “newly diagnosed” patients with HIV.

Table 1

 Details of cases with HIV*


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