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IDENTIFYING PEOPLE SUITABLE IN THE REAL WORLD: NURSE-LED PATIENT CASE STUDIES IN THE UK

Below are examples of three different people living with HIV receiving Vocabria and Rekambys long-acting injectables from across the UK.* Their nurses submitted their stories to show the impact that receiving long-acting injectables has made in their lives and includes their personal experience and their own views. They’ve included details which they found helpful for deciding if Vocabria and Rekambys was the right treatment for them. Please refer to the SmPCs before prescribing.[1,2]

Case Study 1:

Sarah*, 48, no longer has to worry about living with HIV on a daily basis.[3]

  • BMI 23 kg/m2

  • No other medications taken for any other conditions

  • HIV-wild type at diagnosis (diagnosed over 15 years ago)

  • Previous ART: LPV/r/ZDV/3TC combination, DRV/r/TDF/FTC combination, EVG/c/FTC/TAF single tablet, BIC/FTC/TAF single tablet

  • No previous virological failure and no historical ARV resistance and has an undetectable viral load (<50 c/mL).

  • Read Sarah’s story here:

    Sarah has been living with HIV for over 15 years, she is a single mother and her family do not know her status. As a result she has been hiding medication ever since her diagnosis. She started on a boosted PI regimen consisting of multiple tablets which she took for many years. Together with her consultant they decided to simplify her treatment to a one-tablet, once-a-day integrase-based regimen. Sarah says when her one-tablet regimen was introduced it changed her life as she did not need to carry around multiple medication boxes. Sarah has a history of forgetting to take her tablets and some days not wanting to as it is a traumatic reminder of her diagnosis. Sarah suffers with anxiety and depression and has a history of alcohol misuse and abuse, during which time her adherence worsened. Thankfully her treatment did not stop working and no resistance to the medications was developed. When Vocabria and Rekambys became available, Sarah’s nurse discussed this as a treatment option available with her, and she was very interested.

    Sarah was approved by her MDT as she met all the eligibility criteria and the decision was to commence on an oral lead-in of Vocabria and Edurant for one month with a meal, prior to starting the long-acting injectables to ensure she tolerated the combination. When she started on the Vocabria and Rekambys injections, she did feel some pain, and she took over-the-counter pain medication to manage this. At each injection visit, she was monitored for 10 minutes after the injections were given to ensure no other adverse events took place. Now she is established on the injectables she no longer needs over-the-counter pain medication and is used to the feeling of the two injections. In line with her injection visits, Sarah has two monthly reviews for her long-acting injectables where her viral load is monitored in line with the BHIVA guidelines.[4]

    Sarah has been receiving Vocabria and Rekambys for close to a year and she has said it’s been life changing. Despite the nurse visits being more frequent Sarah prefers this as it outweighs her daily pill burden she was used to. Her nurse says her quality of life has improved, and her life is much less stressful as she is no longer worried about family members finding her medications which she was so used to hiding. She said, “I do not have to worry about my HIV” and that she feels a sense of responsibility has been taken from her and this reduces her anxiety levels. She has even managed to have a family holiday and is happy she can receive long-acting injectable treatment.

Sarah’s experience receiving Vocabria and Rekambys:

  • Started on oral lead-in to ensure the new treatment was tolerated
  • Some pain experienced initially but subsided with time
  • Viral load monitored every 2 months in line with injection visits
  • Has remained undetectable (<30 c/mL) for duration of her treatment (10 months)
  • No injections administered late (100% attendance)
  • Quality of life improved and no longer worries about her HIV

Case Study 2:

Dhani*,38, no longer has to live in fear that his family will find his HIV tablets and discover his HIV status.[3]

  • BMI 27-33 kg/m2

  • Other medications include: Atorvastatin, Occasional Famotidine and Semaglutide injections.

  • HIV-wild type at diagnosis (diagnosed 10 years ago), subtype B

  • Previous ART: NVP/TDF/FTC combination, RPV/TDF/FTC single tablet, EVG/c/FTC/TAF single tablet

  • No previous virological failure and no historical ARV resistance and has an undetectable viral load (<50 c/mL).

  • Read Dhani’s story here:

    Dhani has been living with HIV for the last 10 years, he is a gay man from a religious background and lives with his parents, who are not aware of his sexuality nor that he is living with HIV. Dhani struggled to accept his initial diagnosis and has previously seen a psychologist to help him with this. He had noted that taking regular daily oral tablets was a constant reminder of his HIV. He has also spent years hiding his HIV medication in the glovebox of his car, to ensure his family would never find them. Dhani has had a number of oral HIV medications over the years and switched to an integrase-based regimen consisting of one tablet once a day to simplify his treatment. Despite his anguish, he has been adherent to his regimens and has always had an undetectable viral load. Dhani was one of the first patients in his clinic to ask his physician for Vocabria and Rekambys as soon as it became available. After a decision to start Dhani on this treatment and discussions about Vocabria and Rekambys from the clinical nurse specialist and pharmacist, he started the oral lead-in (Vocabria and Edurant) once a day with a meal for one month. Dhani was advised to take another drug he was taking, Famotidine, at a different time of day (at least 12 hours before or at least 4 hours after Edurant, due to a drug-drug interaction with oral Edurant.). After he completed the oral lead-in, his viral load remained undetectable, and he commenced the initiation injections.

    Dhani mentioned immediately after administering the first injections, that he had discomfort in his right leg (Rekambys side). He was provided with over-the-counter pain medication and remained in clinic for 30 minutes to observe for any other adverse reactions (there were none). Dhani mentioned how the pain in the right side had lasted for a few days and he had further noticed that pain in the left leg (Vocabria side) had started 1 week after the injection. It was also suggested that he take over-the-counter pain medication prior to the appointment for his next injections.

    During the course of his treatment, and due to not being able to access his weight loss medication semaglutide (due to supply issues), Dhani gained weight and his BMI reached >30 kg/m2. When this occurred, the nurse team switched to using a 2-inch needle (21-gauge) to ensure the needles reached the gluteus muscle. When this was used the first time Dhani experienced a considerable amount of bleeding from the injection sites. On every subsequent appointment it was ensured that pressure was applied for longer than normal to the site before proceeding with the next injection to prevent this from occurring. Dhani has not experienced any other adverse reactions from the injections and has commented that he has noticed post injection pain decrease with each visit.

    Dhani’s acid reflux was not well managed with famotidine, so this was switched to the PPI lansoprazole once he was fully established on the injectable Vocabria and Rekambys (this is no longer contraindicated as Rekambys bypasses the gut unlike Edurant). This improved his symptoms of acid reflux.

    Dhani has remained undetectable at <20 copies/mL during treatment. His viral load was initially checked at every visit (every 2 months) until month 12 whereby the decision was made within the team to take the viral load at every other visit (every 4 months).

    Dhani has been receiving Vocabria and Rekambys for over 12 months. Overall, Dhani has been extremely satisfied with the injections, the process, and the way in which it has changed his life: “I am completely over the moon with how free my life feels now that I am on the injections. I no longer live in constant fear that my family will find out I have HIV by stumbling across my medication plus I don’t have the constant reminder of my diagnosis when I am taking my meds. Travelling is so much easier now as well. The whole process of having the injection has been so simple from the beginning. I also love how I can schedule all of my appointments in advance so I can plan my work pattern around my injections”.

Dhani’s experience receiving Vocabria and Rekambys:

  • Started on oral lead-in to ensure the new treatment was tolerated
  • Experienced pain and bleeding from injections but subsided with time and
technique
  • Viral load monitored every 2 months for one year, then every 4 months
  • Has remained undetectable (<20 c/mL) for duration of his treatment (14 months)
  • Adherence to injection visits has been 100%
  • Feels free and no longer living in constant fear that his family will find his oral HIV medication

Case Study 3:

Paul*, 40, now feels free from his struggle for years with oral ARVs as he was unable to overcome his fear of swallowing tablets.[3]

  • BMI 28 kg/m2

  • No other medications taken for any other conditions

  • HIV-wild type at diagnosis (diagnosed over 20 years ago), subtype B

  • Hepatitis B immune

  • Previous ART: DRV/r (liquid form) and TFV / FTC (crushed)

  • no previous virological failure and no historical ARV resistance and has an undetectable viral load.

  • Read Paul’s story here:

    Paul has been living with HIV for the last 20 years, and he has experienced internalised stigma and has a real fear of swallowing tablets which he has never been able to overcome. When he was initially diagnosed, he had a low CD4+ T cell count of only 50 cells per mL, he couldn’t face taking any tablets as he couldn’t swallow them, but he was very engaged with his HIV care. He started his treatment years after his diagnosis, and he takes ARVs in liquid and crushed form and he has remained undetectable ever since and he has always been very consistent with his appointments and blood tests. He was referred throughout the years to the psychotherapy service to receive help with internalised stigma and swallowing problems. He found therapy helpful, and he succeeded to come to terms with his HIV diagnosis and developed a loving, caring relationship with his partner. However, he has not been able to overcome his fear of swallowing tablets. When he discovered the injectable therapy Vocabria and Rekambys was available, he asked his physician if he would be a good candidate for it.

    Paul was approved by his MDT as he met all the eligibility criteria, however when his nurse met him to discuss that he was approved for the injections, and that he could start the oral lead-in of Vocabria and Edurant before initiating the injections, he was extremely upset. He couldn’t face the month-long swallowing of two oral tablets every day with a meal. He asked if he could crush them but was informed that this wasn’t possible as Edurant cannot be crushed and must be swallowed whole with water. After realising Paul’s distress, the team discussed internally and decided to start Paul with the injections directly, and to opt out of the oral lead-in. He was very relieved and happy, and he began the injections just a few days later.

    When starting the injections, Paul was excited but he was also a bit scared about the possible pain and the side effects of his new treatment. After a long discussion with his nurse, he felt at ease and reassured. Regarding the pain, his nurse stated that they might cause pain, and to use over-the-counter pain medication if he needed it. She also suggested to do some mild exercise after the injections and avoid sitting still for long periods of time afterwards. He was surprised to realise the injections were not as painful as he thought they would be and he left the clinic after half an hour feeling very optimistic. He experiences some mild pain at the injection site after for a couple of days after the injections but manages this with a dose of over-the-counter pain medication. He is now 6 months into treatment and has remained undetectable. He feels very optimistic, and his mood has improved. he loves the fact he doesn't struggle to take his medications orally in order to remain undetectable.

Paul’s experience receiving Vocabria and Rekambys:

  • Opted out of the oral lead-in as he was unable to swallow tablets
  • Injections were not as painful as he expected
  • Viral load monitored every 2 months
  • Has remained undetectable (<50 c/mL) for duration of his treatment (6 months)
  • No longer has to struggle taking HIV medications orally

Firstly, we at ViiV UK would like to thank the nurses in the UK who submitted these case studies for their patients receiving Vocabria and Rekambys. The cases clearly illustrate the differing reasons people choose to start injectable HIV treatment: whether it is removing the daily reminder of their HIV status by taking regular daily oral tablets, the fear that someone may discover their HIV status by finding their tablets or the difficulty/fear of swallowing oral medication. They highlight the importance of selecting patients who are motivated and willing to attend clinic or have injections at home every 2 months, and the importance of discussing and managing potential side effects from treatment, including pain management. The outcomes above demonstrate the impact that Vocabria and Rekambys has made in these people's lives.

Contact your UK ViiV HIV Nurse Specialist Advisor
Three UK nurses

Implementing Vocabria and Rekambys in the real world: Nurse-led UK Injection Clinics

Read more

Abbreviations:

  • ART, antiretroviral therapy
  • BHIVA, British HIV association
  • BMI, body mass index
  • MDT, multi-disciplinary team
  • PPI, proton pump inhibitor
  • BIC/FTC/TAF, bictegravir, emtricitabine and tenofovir alafenamide
  • DRV/r, darunavir boosted with ritonavir
  • EVG/c, elvitegravir boosted with cobicistat
  • LPV/r, lopinavir boosted with ritonavir
  • NVP, nevirapine
  • RPV, rilpivirine
  • TDF / FTC, tenofovir disoproxil fumarate and emtricitabine
  • TFV, tenofovir
  • ZDV/3TC, zidovudine and lamivudine

References:

  1. VOCABRIA Summary of Product Characteristics. ViiV Healthcare.
  2. REKAMBYS Summary of Product Characteristics. Janssen.
  3. Case courtesy of UK nurse, includes their own experience and views
  4. BHIVA guidelines on antiretroviral treatment for adults living with HIV-1

*These are real people living with HIV who have been prescribed every-2-month Vocabria and Rekambys. The cases have been submitted by their nurse practitioners who have consented and received remuneration by ViiV Healthcare to use the information. Names and some information have been changed to ensure confidentially of the people described. These cases were written in August 2023. All adverse events included have been reported in line with ViiV Healthcare policy.

REKAMBYS (rilpivirine long-acting injection), including the trademark is owned by the Janssen Pharmaceutical Companies and used under license by the ViiV Healthcare group of companies. All other trademarks are owned by the ViiV Healthcare group.

PM-GB-CBR-WCNT-230013 February 2024

Prescribing Information

Adverse event reporting

Adverse events should be reported. Reporting forms and information can be found at www.mhra.gov.uk/yellowcard or search for MHRA Yellowcard in the Google Play or Apple App store. Adverse events should also be reported to GlaxoSmithKline on 0800 221441.

If you are from outside the UK, you can report adverse events to GSK/ViiV by selecting your region and market, here.