March 2023 saw the most prominent Endometriosis Awareness Month to date, with movement building activity from organisations everywhere, including #EndoStories by Holland and Barret showcasing women’s personal journeys being portrayed across shop windows, a survey released by Endometriosis UK showing 75% of women would not go to their doctors with Endometriosis symptoms whilst a fifth think GPs wouldn’t take their concerns seriously, and a first-of-its-kind summit held by Rebekah Lloyd of This Independent Life on the future of Endometriosis bringing together patient advocates, clinicians, innovators, campaigners alike.
Awareness raising of Endometriosis in recent times is remarkable and encouraging, given the many years women have battled to have their voices heard. We know, however, that symptoms and pain relief are just the start of the battle against Endometriosis. We must look ahead and ask – what can the pharmaceutical industry do to transform long-term outcomes for people living with Endometriosis?
Why does it matter?
Endometriosis is a painful and chronic disease. It occurs when the tissue that normally lines the inside of the uterus grows outside of it, leading to inflammation, pain, and the formation of scar tissue. Unfortunately, there is currently no cure for Endometriosis, and treatments are often limited to pain management and hormone therapy.
Work is ongoing as part of the Government’s women’s health agenda to upskill GPs, healthcare clinicians and the wider NHS workforce to diagnose conditions affecting women with greater speed, understanding and precision. Great strides have been made to ensure that appropriate pain management is offered to women. However, the same cannot be said for the introduction of transformative medicines that could potentially cure the disease or prevent tissue growth altogether.
The only solution at present is to have a laparoscopy – keyhole surgery where a small telescope (laparoscope) is inserted into the abdomen to look directly at the internal tissue. Procedures can be performed to destroy or remove the endometriosis, endometriotic cysts and release scar tissue (adhesions). However, in almost all cases, endometriosis tissue grows back over time and the cycle of pain returns.
We know, therefore, that it is vital to find a long-term solution for women everywhere that not only lessens the impact of Endometriosis on their lives but has the potential to remove it altogether.
The role of the pharmaceutical industry
Research is ongoing both here in the UK, with the UKRI’s MRC Centre for Reproductive Health[1], and internationally through EU Members States, including France, developing a National Strategy for Endometriosis with specific focus on forming research teams to study the aetiology of the disease[2]. The pharmaceutical industry has an active role to play within these programmes, as well as investing in their own interests – especially those who already have Endometriosis products approved, and those with pipeline treatments in the works.
Companies can continue to play a critical role by:
Investing in ground-breaking research: with a concentrated focus on R&D, the pharmaceutical industry can end decades of inaction to better understand the causes of Endometriosis and develop new treatments that target those causes. This can include funding clinical trials and research studies to explore the efficacy and safety of potential new treatments, as well as discovering new delivery methods such as long-acting injections or transdermal patches.
Collaborating with patient advocates: women affected by Endometriosis know their bodies better than anyone, and no two Endometriosis journeys are the same. Whilst developing a deeper understanding of biological processes, it is vital that companies work with women to truly understand the variations in how the disease manifests itself, and to better understand needs and priorities. This can include engaging patients in drug development processes, soliciting feedback on existing treatments, and working to address the unique challenges that Endometriosis patients face.
Improving access to new treatments and innovations: whilst research is ongoing for long-term Endometriosis solutions, companies can take an active role in improving access to existing therapies for patients, particularly those from underserved communities. This may mean that women can avoid surgical procedures with long recovery times and may open further R&D routes by engaging with more patients in treatment services.
Looking to the future
The Endometriosis movement is gaining momentum – and the pharmaceutical industry has an opportunity to demonstrate not only its value to patients seeking pain relief, but also the long-term, transformational impact it can have on the disease. Through collaboration and the sharing of breakthrough ideas, insights, and innovations on all sides, we may finally be able to address the unmet medical needs of this patient population and pave the way for a brighter future for those living with Endometriosis.
[2] The Endometriosis Foundation Of America Applauds France's New Na | EndoFound