Sleep quality, concealment of positive status and more - Five news from the European AIDS Conference in Warsaw
Between 18 and 21 October, the European AIDS Conference was held in Warsaw, Poland. The conference was the 19th in order and HIV-Sweden monitored the event by participating digitally. A number of studies were announced during the conference, here we have picked out five news that we think are worth highlighting a little extra.
1. An enhanced role for pharmacists?
In 2022, the government commissioned TLV (Dental and Pharmaceutical Benefits Agency) to develop pharmaceutical services. Pharmaceutical services refer to advice on the use of medicines by pharmacists in outpatient pharmacies. In reality, it means that pharmacists have an expanded role and become a more active part of the patient's care.
In the UK, similar initiatives are underway to broaden the role of pharmacists. As part of a study from Chelsea and Westminster Hospital in London, a pharmacist was employed in a clinic for people living with HIV. The pharmacist's role was broad and included consultation, referral, ordering tests, vaccination, switching HIV medication and prescribing. During the year of the study, the pharmacists, called Advanced Pharmacist Practitioners, saw 498 patients with HIV. Of these 498, 18 completed a survey, which revealed that 72% felt that the pharmacist exceeded their expectations. All were also positive about seeing a pharmacist at their next visit. The study concluded that pharmacists are an important component of the future of HIV care. People living with HIV are getting older, and with age comes an increase in polypharmacy (use of multiple drugs). With their knowledge of how multiple medicines work with each other, pharmacists can be key to meeting the growing need for drug knowledge.
2. Neurocognitive symptoms often go undetected
HAND (HIV associated cognitive disorder) is an umbrella term for different types of cognitive impairment that can affect people living with HIV. The impairment can manifest as asymptomatic or mild functional impairment, to more severe disease states. Examples of symptomatic HAND include dementia or impaired motor skills.
In a new study from Belgium, a research team found out how common HAND is among people living with HIV. By distributing a three-question questionnaire, they surveyed 548 patients over the course of a year. The three questions were;
Do you experience frequent memory loss?
Do you feel that you are slower when reasoning, planning activities or solving problems?
Do you have difficulties paying attention?
Of the 548 patients, 45% answered yes to any of the questions and 14% of all patients answered yes to all three questions. Among those who answered yes, the treating physician was only aware of the neurocognitive problems in less than half. Some of the patients in the study went on to investigate the causes and associations of their symptoms, finding associations with feelings of shame, support from loved ones, sleep quality, and physical and mental health.
3. Concealment of positive status linked to negative effects
Some people living with HIV are completely open about their status, others tell only a few or no one at all. The reasons for not telling can be individual, social and cultural.
In a study from France, researchers addressed the questions: How common is it to conceal one's positive HIV status? What are the effects on people living with HIV?
In the study, doctors handed out questionnaires, which patients filled in themselves. A total of 539 people with HIV participated in the study, of which 355 lived with one or more people in a shared household. Of the 355, 87 had not told anyone else in the household about their positive status. A large majority, 84% of those who did not tell others about their HIV at home, hid their medication in a discreet place known only to themselves. In addition to hiding medication, they felt tired of treatment and experienced problems taking medication regularly. The researchers urge healthcare professionals to discuss HIV, infectiousness in treatment and openness, to support people living with HIV to live more openly with their status.
4. Chronic inflammation behind sleep difficulties in people living with HIV?
Poorer sleep quality and difficulty sleeping have been observed in the past among people living with HIV. During the conference, two studies, one from Greece and one from Turkey, were presented on the topic of sleep. The study from Greece involved 154 participants and the study from Turkey 131 participants. Both studies used the Pittsburgh Sleep Quality Index and the Epworth Sleepiness Scale, which are used to report and measure sleep quality and potential sleep difficulties.
The results of the Greek study showed that 55% suffered from insomnia and 25% from restless legs syndrome/Willis Ekbom disease. The study also showed that about half of the respondents suffered from depression and anxiety. In the Turkish study, nearly 60% suffered from poor sleep quality and the proportion with depression and daytime sleepiness was significantly higher among those suffering from poor sleep quality.
The results of the two studies suggest that the immune system may play a role in relation to sleep quality and sleep difficulties. The Turkish study highlighted that the speed of CD4 cell recovery matters, with faster and stronger recovery being more common in those with poorer sleep quality. This can be related to the Greek study where the CD4/CD8 balance was worse in people who experienced sleep difficulties. A normal balance is at least 1 CD4 cell for every CD8 cell, however, in people living with HIV an imbalance between these cell types is relatively common, which can affect sleep according to these studies.
5. In case of conflict or war - experience from Ukraine in maintaining care and treatment
In recent years, several conflicts have flared up around the world. Health services and their staff are generally not trained to work in an ongoing conflict. Maintaining care and treatment under stressful circumstances therefore requires both planning and preparedness. The AIDS Healthcare Foundation (AHF) has worked in conflict zones and in areas where the security situation is uncertain. A new study provides new insights into the lessons they have learned from the war in Ukraine, identifying staff training, cybersecurity, communication and basic supplies for health workers, as well as medicines and equipment, as critical to maintaining a functioning health system. The AHF recommends a contingency plan that prepares healthcare workers to take care of themselves and their families in order to provide care.
With information gathering and knowledge of the security situation, the contingency plan can be updated and kept up to date, to create the best possible conditions in case of crisis or war. In February 2023, the AHF, together with the Ukrainian government, provided treatment and care to 65 689 people living with HIV, of which 95% were on antiretroviral treatment and 90% had an undetectable viral load.
1 Role of the Advanced Pharmacist Practitioner (APP), Boffito et al, NHS Foundation Trust.
2) Screening for neurocognitive impairment in people living with HIV (PLHIV) through patient-reported outcomes (PROMS) and cognitive assessment, de Scheerder et al, Ghent University Hospital, General Interal Medicine.
3 Impact of hiding HIV positive status on PLWH treatment with ART: results from the French national survey CONCERTO, Palich et al.
4.a. Sleep disorders and Inflammation Biomarkers in People Living with HIV (PLHIV) monitored in a tertiary University Hospital of Greece, Panagopoulos et al.
4.b. Prevalence of and Factors Associated With Poor Quality of Sleep in People Living With HIV and Investigating the Relationship Between Sleep Quality and CD4+ T Lymphocyte: Cross-Sectional Study From Turkey, Korkmaz et al., University Ataturk Training and Research Hospital
5. Supporting the mission of caring for patients during military conflicts:lessons from Ukraine, Avelino-Silva et al, AIDS Healthcare Foundation
HIV-Sweden hosts organizational forum in Stockholm
Participate, influence and meet others! Make your voice heard in the fight against HIV in Sweden.
On 10 November, HIV-Sweden is organizing the Organizational Forum, a meeting for all members of HIV-Sweden who want to help shape the content and direction of the organization. The day will include workshops, presentations and discussions.
For more information and registration, please contact info@hiv-sverige.se
A warm welcome!
Time and place: Friday, November 10, 09:00 - 15:00 at Hiv-Sweden's premises, Industrigatan 6, Stockholm.
HIV-Sweden attends HIV-Nordic seminar in Oslo
HIV-Sweden will participate when HIV Norway hosts a Nordic conference on the theme of knowledge and research in relation to HIV on September 1 in Oslo. The conference is co-organized by the Nordic association HIV-Nordic, which includes HIV-Sweden, HivNorge, Hiv-Denmark, HivFinland/Positiiviset and Hiv-Iceland.
The conference provides a Nordic perspective on surveys, reports and knowledge bases in the Nordic countries. After the presentations, a panel will discuss the importance of new knowledge and how it can be used to create change.
The event will be held in central Oslo and is open to all. Register your participation by August 28, click here to access the registration form.
Time: September 1, 14:00 - 16:00
Location: Rosenkrantz' gate 4, Oslo (HivNorge)
Stockholm Pride: Meet HIV-Sweden in Pride Park
Meet us in Pride Park!
Between July 31 and August 5, 2023, Stockholm Pride will take place. HIV-Sweden participates in this year's festival to draw attention to HIV and highlight challenges related to HIV.
We will be at Pride Park between 18:00 - 20:00 every evening from August 2 until Friday August 4. You will find us at our three meter high Red Ribbon in the park.
Come and talk to us, share your thoughts on HIV and learn about our solutions for a better life with HIV.
For more information contact Emanuel Karlström, Strategist, emanuel@hiv-sverige.se
Mandatory disclosure in healthcare risks damaging public health work on HIV/AIDS
HIV-Sweden sent this text to the Ministry of Social Affairs by email on June 20, 2023.
The government intends to investigate whether public health care workers should report undocumented migrants. On SVT's 30 minutes in May, Minister of Justice Gunnar Strömmer stated that he does not intend to exclude any public employees in the upcoming investigation. If the proposal becomes reality, we may see more new cases of HIV, a larger number of unreported people living with HIV and a larger proportion of people with untreated HIV in Sweden.
Undocumented migrants living or staying with HIV in Sweden are currently entitled to care and medication under the Infectious Diseases Act. The law thus protects both the individual's life and health by providing access to treatment and prevents the spread of infection as HIV is not transmitted during treatment. The system is well balanced and a fundamental part of Sweden being the first in the world to reach the UNAIDS 90-90-90 target in 2015.
With the obligation to report that will now be investigated, we may instead see increased social exclusion with poorer infection control as a result. The proposal is intended to limit the right to welfare services, including health care, according to migration status. Infectious disease nurses, doctors and other health care professionals can then be required to report anyone who seeks care to test or treat their HIV and does not have the right to stay in Sweden. For individuals affected by the proposal, a sense of anxiety and resignation may arise. An imminent risk of deportation, together with the stigma associated with HIV, creates barriers to both HIV testing and access to medication.
Is the government prepared to risk the work against HIV/AIDS and public health? Will Sweden, which already has a dark history of criminalizing HIV, once again marginalize HIV and people living with HIV?
Sweden still needs a sensible and balanced public health policy on HIV/AIDS. Making people face the choice of either seeking care for their life and health, or being forced out of the country, is the wrong way to go. HIV-Sweden therefore calls on the government to take this letter into consideration and to exclude, to the smallest extent possible, healthcare professionals who meet people living with HIV or work with testing in the directives for a future investigation.
Eva Lilja,
President, HIV-Sweden