HIV services in Russia through the eyes of patients

In December 2021, Life4me+ conducted a survey amongst people living with HIV in Russia. Using that data we are able to compile an overview of the state of HIV services in Russia, accord to the real experts - people living with HIV. Comments left by survey participants were used alongside the questionnaire data to build the analysis.

Service Level - general impressions

Assessment of the overall service of HIV centres in Russia was based on three key questions:

1. Rate the quality of care you received at your HIV centre (out of 5)
2. Rate your first impressions on your first visit to your HIV centre (out of 5)
3. Did your specialist prescribe you antiretroviral therapy immediately? (Y/N)

70% of respondents were satisfied with the quality of care at their HIV centre, 44% had a good first impression and 63% of respondents started antiretroviral therapy as soon as they registered at the HIV centre.

What’s good and what’s bad?

After conducting an analysis of all comments, the top three complaints from people living with HIV accessing care in Russia were:

1. Long queues in the HIV centres
2. Rude and indifferent attitudes of staff
3. Being prescribed old ARVs

“Doctors tell people there’s no such thing as single pill therapy”

“When I was feeling really bad, the doctor refused to give me therapy - saying that I was already dying”

Looking to more positive results: 72% of respondents said that they have never encountered discrimination in their HIV centre, 63% were satisfied with the condition and location of the centres, and 36% were completely satisfied with their HIV service.

Undetectable = Untransmittable (U=U or H=H in Russian)

Only 53% of those participating our survey said that they’d learned about “Undetectable = Untransmittable” from their doctors, the remaining participants who were aware of U=U said they’d learnt from the internet and friends. 7% of respondents said their doctor was “unaware” of U=U and 11% “did not believe” in the statement.

Respondents believe that low staffing levels, “the old ways”, and limited time for appointments do not allow doctors to deliver all the pertinent information in a timely manner.

“Our infectious diseases specialist is a tired and irritable doctor, he does not provide any explanations. I learned all I know from blogs and chatting to other people”

“By and large, people living with HIV are alone - they have just themselves and the internet”

Antiretroviral therapy and testing

30% of those responding to the survey said that even when they told their doctor that they were experiencing severe long-term side effects from their HIV treatment, their doctors didn’t change the regimen - or it took considerable effort to change regimen.

“The regimens offered are so old that whether you change regimen or not, you’ll still be given outdated toxic drugs - often up to six or seven pills a day - with many side effects”

There were many complaints about the quality of treatment offered. Patients had trouble getting answers to questions like “Why am I still being given outdated therapy when new drugs exist?”.

Consistent supply of treatment was also a problem with 23% of respondents reporting periodic or constant interruptions in their therapy.

13% of patients regularly experienced difficulties getting tested for, or receiving the results of, viral load and CD4 counts. The main reason given by their HIV centres was that the laboratory services are overwhelmed with COVID testing.

“I would really like there to be more than one treatment room. There are so many patients and only one room. Getting my bloods done is a challenge.”

But, at the same time, 87% of respondents have not experienced treatment interruptions, 75% receive their treatment on time and 63% reported being able to change treatment regimen without a problem.

Lack of specialists

This problem is ubiquitous and long known. Often there is only one HIV specialist for a whole district, which means they don’t have the time or resources to offer a full and complete consultation. Around 50% of respondents reported a shortage of both HIV specialists and more general support staff.

People’s main complaints, taken from the survey comments, were:

• Long queues without the ability to sit down whilst you wait
• Some HIV centres lack psychologists
• Lack of privacy - some centres see multiple patients in the same room at once
• Inconvenient opening hours - making attending appointments difficult for those working office hours
• Difficulties making appointments - often having to choose dates three or more months in advance
• Lack of online access to individual patient records
• Lack of educational programs and patient forums

“I can’t complain about the doctors, they are working with double or even triple a normal workload. But how can we talk about something like U=U when we both know there’s a queue in the corridor? They need me to be quick.”

Also, amongst the survey participants who preferred to receive their care from a paid private clinic because they were “tired of the problems” of the HIV centres and their older treatments.

But there are also positive reviews. Many patients are satisfied with their well qualified doctors, good attitudes from staff, access to psychological support and uninterrupted supply of treatment. There are HIV centres where, for convenience, remote consultations are carried out and prescriptions issued electronically. Some centres also offer patient portals where people can see the results of their blood tests and more.

“I would like to note that at the HIV Centre in St. Petersburg, patients have the opportunity to see the results of their tests on the ‘city portal’, which saves a lot of time for both the patient and the doctor.”

Conclusions

People living with HIV in Russia rarely criticise the work of their HIV centres. Some are worried about damaging their relationship with their doctors, and others don’t believe in change. We believe that the data Life4me+ have collected in this survey show that it is possible to improve HIV services in Russia.

According to the patients surveyed, this is what needs to change for services to be improved:

1. Improve the attitudes of both clinical and non-clinical staff in HIV centres
2. Improve the quality of HIV treatments offered
3. Increase the amount of time each patient gets with their doctor, to allow for full and complete consultations.

Looking at the results of our 2021 survey clearly shows that there are problems with the HIV services offered in Russia, and that are a lot of time. But people shouldn’t lose sight that there are excellent HIV specialists in centres across the county who are doing an excellent job, even under some very difficult conditions.

Most importantly, people living with HIV should not lose hope. There are excellent treatments out there and who knows what the future holds.

“I’m waiting for a medicine that would cure me completely!”