As you may know, LONGEVITY spent time understanding patient views to make sure our goals align with their needs. We wanted to address patients’ concerns that research highlighted.
LONGEVITY is overseen by the Centre of Excellence for Long-acting Therapeutics – Global Health (CELT Global Health) and its co-Directors Professor Andrew Owen and Professor Steve Rannard. Funded by global health agency Unitaid, LONGEVITY is an international consortium made up of the various disciplines and expertise required to take a long-acting medication from idea to clinical trial.
We’re focusing on long-acting preventive options for tuberculosis and malaria, and a long-acting one-shot-cure for hepatitis C virus. What sets LONGEVITY apart is that, once these long-acting options are ready, they will be prioritised to patients in low- and middle- income countries where the burden of these diseases is disproportionately high. We believe that long-acting options could make a real difference to people in need in these areas as they could help avoid current adherence challenges that people face.
What is LONGEVITY’s community engagement work?
Our belief that long-acting options could help, does not mean that those affected will agree. We needed to know whether patients also think that long-acting options would be attractive to them. We worked with University of Nebraska Medical Center who oversaw LONGEVITY’s community engagement work with the Treatment Action Group to find out relevant patient views.
We explained the findings on each disease’s page on the LONGEVITY site, so you can see these for malaria, tuberculosis and hepatitis C virus. Something we learned from the patient involvement work across all three diseases was that some of the main concerns patients had around long-acting medications were the same.
Dr Susan Swindells addresses patient concerns around long-acting medicines
We spoke to Susan Swindells, a Professor of Internal Medicine in the Section of Infectious Diseases at the University of Nebraska Medical Center, USA, to write a piece addressing these concerns. That way when these medications are ready for administration, the information already exists to put their minds at ease.
A native of England, Dr. Swindells earned her medical degree from University College London, with postgraduate training in England and at the University of Washington in Seattle. She has been involved in HIV care since 1984. A clinician and active researcher, Dr. Swindells has many years’ experience in translational and clinical research in the field of HIV/AIDS, with a special interest in tuberculosis co-infection. Dr Swindells not only managed LONGEVITY’s community engagement work but has been part of the consortium from the very beginning back in 2020.
As part of our development program for long-acting treatments for hepatitis C and tuberculosis infections, the LONGEVITY team conducted several surveys of both potential end-users and providers for both diseases. Input from both communities is critical in making sure that any formulations we develop will be acceptable and will ultimately be used in clinical practice. Decisions about which drugs to try to develop into a long-acting formulation are guided by several important factors, the first one being that the medication is actually suitable for a long-acting formulation. After that, we consider the potential side effects of the medication, and we make sure that the final long-acting formulation is suitable for use in low- and middle- income countries. This means for example that it does not have to be kept frozen and is relatively easy to administer in an injection form. As well as this, the LONGEVITY team are committed to making sure that implementation and access planning accompany the drug development, instead of just following it, sometimes a long time later.
Overall, our survey results were very positive with the majority of patient respondents saying that they would be interested in trying long-acting injections instead of daily oral therapy for both hepatitis C treatment and prevention of TB, but some overriding concerns were also identified. Mostly patient concerns were that the long-acting formulation might not be as effective, and that the side effects might last longer. The LONGEVITY team is very mindful of these concerns, and we discuss them both in more detail below.
Concern 1: Will long-acting medication be as effective as daily pills?
People often worry about long-acting injections, and whether or not these will work as well as more familiar oral tablets. This is one of the easier concerns to address, because LONGEVITY only choses oral medications that are suitable for a long-acting formulation and are highly effective are chosen. During development, the potential long-acting formulations do not progress unless they show the same or better effectiveness as the oral medications. Even if researchers want to keep trying, they have to go through a strict approval process before the long-acting versions can be approved for use.
If the long-acting version is not as effective, it has to have a very compelling reason to be approved for use, such as less serious side effects for example. Bottom line is that we are trying to overcome the poor outcomes that may be associated with oral dosing and we won't accept any truly negative issues while we are doing it.
The only caveats here are use in populations different from those tested in the main studies, for example children and pregnant people. Studies of effectiveness in these populations often lag behind and so more caution is needed when using in special populations.
Concern 2. Will side effects of long-acting medications last longer?
Specific side effects obviously depend on the medication involved and some are more serious than others. For example, nausea or indigestion are fairly frequent medication side effects which are bothersome but can often be easily treated and resolve quickly after the long-acting injectable drug wears off. Rare side effects like liver toxicity are a lot more serious and there is no real treatment for this other than stopping the offending drug. This may take a while if the drug is long-acting, so this is a concern for the drug developers, and we monitor for this very closely during the early studies.
So this worry is not unfounded, but it's a trade-off that comes with the benefits of steadier drug levels, much less frequent dosing, and protection of privacy and confidentiality. For example, if successful our long-acting hepatitis C drugs might be able to cure the hepatitis with one injection, as opposed to weeks of taking daily oral medicine.
Publications that came from LONGEVITY’s community engagement work
- Patient and provider preferences for long-acting TB preventive therapy
- Preferences and feasibility of long-acting technologies for the treatment of hepatitis C Virus: A survey of patients in diverse low- and middle- income countries
- Preferences and feasibility of long-acting technologies for treatment of hepatitis C virus in low- and middle-income countries: A survey of providers and policymakers
- Preferences of patients and providers in high-burden malaria settings for long-acting malaria chemoprevention
LONGEVITY aims to simplify hepatitis C virus, malaria and tuberculosis treatment and preventives 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, Extentus Pharma Ltd, Johns Hopkins University, Medicines Patent Pool, Queen's University Belfast, Treatment Action Group and the University of Nebraska Medical Center.
