Treatment Action Group (TAG) brought together an international selection of researchers and community representatives in a webinar to present LONGEVITY’s community and civil society engagement work. It was a 90-minute session that highlighted the context of the work, the findings of various large data studies and provided different community perspectives around the work.
What was the webinar for?
Over the past year or so you may have seen us posting about various publications from LONGEVITY’s low- and middle- income countries (LMICs) community and civil society engagement research. These included LMIC provider and policy maker preference and feasibility of long-acting hepatitis C virus treatment, shortly followed by hepatitis C virus patients in LMICs’ preferences towards long-acting hepatitis C virus treatment, and finished this year with tuberculosis patients and providers in LMICs’ preferences towards long-acting tuberculosis preventative treatments.
These large pieces of research involved huge amounts of data collation and took many teams to assemble and evaluate. All of them were overseen by LONGEVITY partners University of Nebraska Medical Center and TAG. TAG took time on Friday 30 May to present LONGEVITY Community Engagement: Perspectives of people with HCV and TB lived experience and healthcare providers on potential long-acting therapies. It was an international webinar to present these findings to the global research, healthcare, health access and people with lived experience community. The webinar recording has been uploaded to TAG’s event page.
While all the findings have been made available over time, this was the first time that the community engagement work from LONGEVITY, funded by global health agency Unitaid, has been publicly presented all together and it was fascinating and inspiring to see it as a more holistic story of perspectives and preferences of the global community of people with lived experiences’ needs.
What is LONGEVITY and why are TAG key to its goals?
The Centre of Excellence for Long-acting Therapeutics (CELT), co-Directed by Professor Andrew Owen and Professor Steve Rannard, was set up to oversee work such as the LONGEVITY project.
Professor Owen and Professor Rannard could see the heavy impact that hepatitis C virus, tuberculosis and malaria is having in LMICs, but were also aware these diseases are treatable and preventable. CELT hope that long-acting versions of effective and safe medications, which are already on the market, will provide part of the answer to these diseases that are being neither prevented nor treated effectively in LMICs.
As well as finding a funder with similar values, it was clear that LONGEVITY needed a consortium to reach the people that needed these medications most. An invaluable aspect of this work was going to be community input. This was where we sought University of Nebraska Medical Center’s expertise, and they brought in TAG.
For those who haven’t seen our 2024 World Health Day blog, TAG is a non-profit organisation that started as an activist group in the 1990s with a focus on reducing the predicted timeframes of creating and disseminating treatments for AIDS. Their work in accelerating these medications quickly led to realising the need to address the rapidly increasing co-infection rates of tuberculosis in people living with HIV. Eventually, these same concerns resulted in adding hepatitis C virus medications into their portfolio access as well.
TAG is a community focused group with international contacts relating closely to what LONGEVITY is trying to achieve. They were in a strong position to connect our work and goals with the people we’re hoping they’ll benefit, to see if they also believe it will be a worthwhile option for them and their lifestyles.
What did the webinar involve?
Context
Joelle Dountio Ofimboudem (Hepatitis C Virus Project Director – TAG), Gauri Khanna (Monitoring and Evaluation Manager - Unitaid) and Dr Adeniyi Olagunju (Senior Lecturer - CELT)
The session was introduced by Joelle Dountio Ofimboudem who has been working with LONGEVITY from the start of our community work. Joelle provided context for the research and was the driving force for the webinar’s key message; community insight and input is important, and it is necessary to include the people in research that the research is for. Joelle announced a new hepatitis C virus report that TAG have just produced and made a poignant remark to acknowledge that in times where we’re seeing struggles in global health research, we appreciate funders, like Unitaid, that allow us to continue important research.
Gauri Khanna introduced the audience to Unitaid, highlighting their mission to expand the reach of the best health products to those who need them most. The reason Unitaid are keen to invest in the long-acting pipeline is that long-acting therapies offer potentially game changing medical solutions to key contributing factors to the continuing sickness and persistent transmission of some of the most devastating diseases in LMICs.
Unitaid made a commitment to community and civil society engagement. There was a clear need to include communities earlier in research to make sure what we create meets patient needs. This includes working with providers and legislators, to sensitise them to long-acting options before they’re available, which will be paramount in the adoption and recommendation of these products when they’re available.
Dr Olagunju provided context for CELT and the LONGEVITY project, explaining some of LONGEVITY’s goals. These included our hepatitis C virus treatment work towards a one-shot cure, and our concentration on tuberculosis preventative treatments that prevent latent tuberculosis infection becoming tuberculosis disease. CELT work to create long-acting versions of existing safe and effective medicines and our LONGEVITY work is no different. Dr Olagunju explained that long-acting versions of these medications hold great promise to address the shortcomings that daily oral administration is having.
The introduction was concluded with a snapshot of LONGEVITY’s progress, including that we have achieved proof-of-concept in both our hepatitis C virus and tuberculosis long-acting work.
Hepatitis C virus survey results – Renae Furl (Clinical Study Coordinator – University of Nebraska Medical Center) – Slides 27-42
We wanted to understand the preferences and feasibilities of long-acting hepatitis C virus treatment modalities, to inform our development of a long-acting cure for hepatitis C virus. University of Nebraska Medical Center organised two separate sets of surveys to help us understand the perceived advantages and disadvantages of a long-acting medicine from those who would be using it. One survey was for LMIC health care providers and policy makers, and the other went to people at high risk of, and with, hepatitis C virus lived experience in LMICs. The long-acting modalities compared were injections, implants and microarray patches.
Provider and policy maker surveys:
- These findings were published in the Journal of Viral Hepatitis in May 2024
- Surveys were completed by respondents in 42 different LMICs, they included representation from each of the six World Health Organizations Regions
- 43% of providers believed that 75-100% of their patients would prefer long-acting medication to daily oral pills, with an additional 24% believing that 50-74% of their patients would
- 64% believed their patients would prefer injections over microarray patches or implants
- When asked what they believed the benefits of long-acting cure options would be, the top selections were
- patient satisfaction or quality of life (88% of respondents)
- improved adherence and treatment success (87% of respondents)
- improved drug efficacy (84% of respondents).
Providers believed long-acting hepatitis C virus treatment options will appeal to patients who have struggled with medication adherence in the past
- When asked what they believed the obstacles of a long-acting cure would be, the top selections were
- The cost of the drugs making them unfeasible (70% of respondents)
- The drug approval regulatory process (46% of respondents)
- Concerns around side-effects and drug interactions (46% of respondents).
Patient surveys:
- These findings were published in the Journal of Viral Hepatitis in November 2024
- Responses were collected in LMICs including Egypt, Ethiopia and India. Survey sites in Egypt and Ethiopia were health centres that monitor and treat people with hepatitis C virus. India’s respondents were people who inject drugs working with a community outreach program.
- 92% of respondents were diagnosed with hepatitis C virus, of those 61% have previously received treatment and 88% of those had been cured
- Of the patients who had received treatment for their hepatitis C virus, 85% were treated with pills
- Willingness to try LA modalities
Questions were asked as ‘if an injection worked as well as pills…’- If patients had received any injections in the past, they were more willing to use any of the modalities
- The highest willingness out of the three modalities was to try long-acting injections (78%)
- There was increased enthusiasm for long-acting injections amongst those who have hepatitis C virus but have not been treated (94%)
- There was lower enthusiasm for long-acting injections from those who had hepatitis C virus and had been treated and cured (61%)
- When patients were asked what their preferred dose was
- 57% wanted a onetime injection
- 35% wanted one a month for 2 months
- 41% once a month for three months
- When asked what they believed the benefits of a long-acting injection would be, the top selections were
- It will be easier than pills (63%)
- It will work better than pills (52%)
- It will have less side-effects (50%)
- Other people won’t know the patient is taking medicine (43%)
- When asked what their concerns around long-acting injectable treatment for hepatitis C virus were
- It might not be effective (53%)
- That the side effects may last longer than those of pills (44%).
Conclusions
- Both patients and providers have high willingness to try a long-acting hepatitis C virus treatment
- Providers were more likely to be onboard if costs are similar to the current pill-based treatment to implement.
Tuberculosis survey results – Dr Marcia Vermeulen (Medical Officer – University of Cape Town) – Slides 43-59
Latent tuberculosis infection is when a person carries tuberculosis bacteria, but it hasn’t progressed to active tuberculosis disease. Tuberculosis preventative therapy are medications that prevent the progression from latent tuberculosis infection to active tuberculosis disease. Preventative therapy is key to tuberculosis elimination but is often underutilised. LONGEVITY hopes that tuberculosis preventative therapy will improve linkage to care and treatment adherence.
The aim of this study was to survey people and health care providers to ascertain acceptability and feasibility of implementing long-acting tuberculosis preventative therapy. It explored injections, implant and microarray patches compared oral pills.
Patient surveys:
- These findings were published in the International Journal of Tuberculosis and Lung Disease in May 2025
- While it was not a prerequisite to participate, this was a cross-sectional in-person survey in two high tuberculosis burden countries (India and South Africa)
- Preferences for long-acting therapies
- 68% of patients regarded long-acting injection as the most effective/strongest option, followed by pills with 19%
- 75% would try injectable long-acting tuberculosis preventative therapies. The highest willingness was in patients who have received injectable medications in the past
- Patients weren’t provided a timeframe, but when asked what their preferred dose was the answer was different between the two countries.
- Patients in South Africa wanted to receive a single administered injection
- Patients in India wanted one injection a month for two months.
From speaking to the health care providers that administered the surveys, they hypothesised that; patients in South Africa preferred single administered injection as it was less time away from work, and patients in India preferred once a month for two months as it gives them an opportunity to access a health care provider if there are concerns about side effects from the first administration.
- When asked what they believed the benefits of a long-acting injection would be, the patients selected:
- Easier administration compared to pills (79%)
- That it would work better than pills (75%)
- When asked what their concerns around long-acting injections are, the patients selected:
- That it might not be effective (45%)
- That side effects may last longer than oral pills (40%)
- 75% of patients who were parents/guardians of children under 12 years are willing to let their children receive long-acting tuberculosis therapies, this rises to 79% in parents/guardians of children over 12 years old. In both age groups of children, the main concern from parents was that side effects would last longer than pill side effects.
Health Care Provider surveys:
- This was a parallel cross sectional online survey of health care providers in predominantly LMICs
- Providers were all experienced, with the majority having been prescribing tuberculosis preventative therapies for 5 years or more
- Preferences for long-acting tuberculosis preventative therapies
- 41% of respondents said they would recommend long-acting tuberculosis preventative therapy to all their patients
- 49% would recommend them to patients with HIV co-infection, other comorbidities, or patients at high risk for suboptimal adherence due to socio-economic factors or being from a marginalised group.
- 43% of respondents would prefer to recommend long-acting injections, with pills coming in second 23%
- Health care providers considered the benefits of long-acting tuberculosis preventative therapies to be
- Improved adherence (99%)
- Better efficacy (98%)
- The concerns LMIC health care providers had around long-acting tuberculosis preventative therapies are
- The cost of drugs (86%)
- The concern about side effects and drug interactions (79%).
Conclusions
- Long-acting tuberculosis preventative therapies have high levels of acceptability and feasibility among both patients and providers with a strong preference for long-acting injectables
- Development and implementation of long-acting tuberculosis preventative injections may improve health outcomes in high tuberculosis burden areas.
After the presentations, there was a lively question and answer session between attendees and the presenters hosted by Jacque Wambui from AfroCAB. The audience were intrigued by the sources for our research as it didn’t reflect what they see in their area, others were interested in how we roll this out and make the costs feasible. The whole Q&A is available to watch on the session recording (from 56 minutes – 1 hour, 15 minutes).
If you have any questions for the panel, please send them to askcelt@liverpool.ac.uk.
What do the survey results mean for communities?
True to LONGEVITY’s ethos, community are an integral part of our work, so TAG made sure they had a voice in the webinar. If work is done about people, it should include them, so equal time was given to community advocates as the speakers had.
Ketho Angami (ED – Access to Rights and Knowledge Foundation India)
Ketho started with remarks of surprise that people preferred injectables, but voiced how important it is to make these drugs affordable for people to access them and how well are countries prepared to adopt these new technologies in the coming years. He expressed some areas of concern such as cost effective, procurement and supply, the turnaround time. There was real enthusiasm around integrating these technologies outside of medical approaches, such as in harm reduction services, though concerns were raised over the extent of what is needed to reach the World Health Organization’s 2030 elimination goal for both hepatitis and tuberculosis.
Ketho applauded the presented work as it’s patient centric and that is what they believe is required if we’re to come close to those elimination goals. While it was noted that terms such as community and civil society engagement are becoming overused, for research like this it will be vital to implement the changes needed to onboard these medications.
To end, Ketho implored organisations like Unitaid to start investing in communities, only then will the right people be reached with the right treatment. Only then can the right and newest technologies be administered effectively to eliminate hepatitis C virus and tuberculosis.
Dorothy Onyango (CEO – Women Fighting AIDS in Kenya (WOFAK))
Dorothy started by highlighting the impact that HIV is having on the world and how, when we talk about HIV, we must talk about hepatitis C virus, tuberculosis and other communicable diseases that effect people living with HIV. In respect to this, the model of community engagement for this project should borrow a leaf from how HIV was tacked to create awareness and advocacy of hepatitis C virus.
From a community perspective, Dorothy believes that long-acting technologies can be embraced to help. People are often not receptive to injecting therapies, but through community work we can highlight that if people are not or cannot take their medication, a long-acting injection is the alternative. We can help patients and their communities understand that long-acting injections reduce pill burden and stigma. Dorothy recommended advocacy and support groups to get this to the people who will need it most.
Tuberculosis is still stigmatised in the areas where Dorothy works, so an injectable treatment option will avoid the stigma of people seeing you going to a clinic regularly for pills. The women Dorothy works with don’t have time to go to the clinic regularly as home, family and community life is time consuming, long-acting injections will help avoid that issue as they would fit within women’s lifestyles.
Dorothy concluded by making the point that while work towards mass production will be key for affordability, engagement work is as important. We must continue to look for ways to include the community, providers and health care volunteers, to talk about the administration and side effects concerns that real people have. We must make sure nurses know how to effectively administer the medication and that the information is understood and ready to relieve patient concerns. Affordable drugs are meaningless if no one trusts them.
What were the key takeaways from the webinar? (3-5)
- Long-acting injections for both hepatitis C virus and tuberculosis are welcomed in LMICs with high levels of preference and feasibility from both patients and providers
- LMIC community outreach is key and requires a holistic approach to make sure information is understood where it needs to be
- Affordability of anything LONGEVITY produce is paramount to its accessibility
- Both patients and providers believe long-acting therapeutics will provide beneficial health outcomes.
A video of the 90-minute event is available to watch on TAG’s event page.
The LONGEVITY project aims to simplify hepatitis C virus, malaria and tuberculosis treatment and preventative treatment to reduce the drug burden and the number of patients requiring complex therapies for active disease.
Find out more about the LONGEVITY project
The LONGEVITY Project is funded by global health agency Unitaid
The project also involves critical partners and collaborators in the Clinton Health Access Initiative, Johns Hopkins University, Medicines Patent Pool, Tandem Nano Ltd., Treatment Action Group and the University of Nebraska Medical Center
