The UK government mistakenly sent automated texts to people with HIV who are entirely healthy and on successful treatment, telling them they must not leave their homes for 12 weeks or risk "severe illness" from the coronavirus.
Current advice is that only people with HIV who are not on treatment, are not virally suppressed, or have other health problems should follow the so-called shielding instructions — issued to those who are most vulnerable to COVID-19 — that they cannot leave their house for any reason.
The British HIV Association (BHIVA) has now written to the chief medical officer of England, Chris Whitty, seeking an explanation for the text from "UK_Gov".
The text told recipients: "NHS Coronavirus Service: Your condition means you are at high risk of severe illness if you catch Coronavirus. Please remain at home for 12 weeks unless a healthcare professional tells you to leave. You will get a letter from the NHS to confirm this."
BHIVA then had to issue a statement in an attempt to correct the error and reassure patients.
"We are aware that many people with HIV have today received a text advising them to 'shield'," said the statement. "We are looking into why this has happened but there remains no evidence that people with well controlled HIV need to shield."
A spokesperson for BHIVA told BuzzFeed News that the organisation had asked the Department of Health to explain but had not yet received a response.
While the number of Britain's 100,000 HIV patients who received the text is not yet known, the spokesperson said, anecdotal accounts suggest it is not confined to any particular region, although it will likely only be in England, as the other countries of the UK have different health governance.
BHIVA added in its statement that people with HIV who received the text should instead follow the advice given in a joint statement late last month with the Terrence Higgins Trust that only "people with a CD4 less than 50, or who have had an opportunistic illness (a serious illness due to suppression of the immune system) within the last 6 months, should be encouraged to follow the shielding advice for the extremely vulnerable".
Dr Laura Waters, an HIV consultant and chair of BHIVA, told BuzzFeed News that "it seems like they've cast the net wider than we would recommend clinically".
She said she believed the text was an overreaction to a previous confusion in which HIV was completely removed from the list of conditions on the "shielded" list.
"We had people contacting us saying they'd been advised to shield but they're not entitled to government support because when you go on the website you have to have a condition on the list," said Waters.
"So we created a BHIVA template letter to try and help and we've been gently pushing [the government] to include people who are vulnerable in terms of HIV-related factors," she said, but this was to no avail. Even though a link to the list was included in the text, it still does not mention HIV.
"And then suddenly with no warning at all it was people getting texts that triggered us finding out about it. BHIVA didn't know [and] the HIV CRG [the NHS's clinical reference group] didn't know what the Department of Health were going to come out with. So we were all a bit surprised."
Waters said she and the chair of the HIV CRG, David Asboe, wrote to Whitty, the chief medical officer, asking that he "explain the rationale" behind the text and adding, "if there is one, can you explain why we were not consulted or forewarned?"
Waters said that for people with HIV, the text had "been pretty distressing, and I expect there's many more people trying to get through to their clinics worried about what to do".
Some people with HIV who received the text expressed their confusion and concern on Twitter that despite being "undetectable" — meaning their medication suppresses the virus — and despite having a high CD4 count (the main measure of the immune system), they had still been told they must stay in total isolation.
The Department of Health did not respond to BuzzFeed News prior to publication.