MEMBER BEST PRACTICES
Ensemble Contre le Lymphome (ECL), Morocco
Having been a patient diagnosed and treated for Anaplastic T-Cell lymphoma in Morocco, Abdellah El Bouhairi was all too familiar with the course of the patient experience, and the challenges that patients in Morocco face. Because of this knowledge, he felt patients needed to be better supported.
‘I know how important moral support is for healing. I wanted this disease to be better known so that patients are detected very early and have a better chance for healing,’ he said.
After meeting with a patient organisation in France (France Lymphome Espoir), Abdellah connected with fellow patients A. Abounadi and M. Touzani, and Professor Mahmal, a haematologist-oncologist. These connections allowed for Ensemble Contre le Lymphome (ECL) to be formed in Marrakech in July of 2016. Abdellah acts as president of the organisation, and the team consists of 10 volunteers.
Since its beginnings, the organisation has been growing steadily; there are now 17 patient members and many supporters.
Ensemble Contre le Lymphome Objectives
The organisation aims to support lymphoma patients in Morocco through:
- providing lymphoma information;
- providing moral support;
- helping patients to access care and accommodation;
- seeking financial assistance for patients.
The ECL branch in Marrakech is currently the only one, but with promising contacts in Casablanca and Rabat, they aim to eventually form three branches spanning three cities in Morocco.
Challenges for Lymphoma Patients in Morocco
In Morocco, the disease is not well known, so diagnosis and treatment can be delayed. Once diagnosed, access to care needs to be improved and medical coverage made more equal.
There is a lot of work to be done and improvements to be made so that lymphoma patients in public hospitals are treated faster.
‘Care is difficult, and patients who come from distant regions need support to be able to receive treatment. In fact, if they are outpatient for several months, they need to find an accommodation in the city where they are receiving care. Some patients stop their treatment just because they cannot afford the cost of this accommodation.’
Drug shortages are also common, so patients cannot always get the treatments they need.
Doctor-patient communication is also a challenge. Some patients do not feel they can speak easily with their doctor, and consequently, do not always have the right information.
Meeting These Challenges
Ensemble Contre le Lymphome has worked tirelessly towards their goals.
Informed by their network of doctors, laboratories, and partner patient organisations, ECL connects with patients to provide them with tailored support. The organisation has a regular presence in hospitals where they distribute information leaflets to patients, provide moral, educational and practical (i.e. accommodation) supports, and set up meetings between social workers and patients. Additionally, they can provide some financial support to patients through sponsorship, or through such initiatives as ECL logo t-shirt sales.
Finding their Place
ECL has worked hard to gain recognition within the healthcare community, and recently, their efforts paid off. The hospital in Marrakech where they concentrate their work has offered them a permanent room that they will soon move into; having this presence so close to the patient will allow them to provide support to patients and their families more readily.
World Lymphoma Awareness Day (WLAD) 2017
Last September was the first time ECL celebrated WLAD as an organisation. Professor Mahmal led a conference for over 35 participants including patients, caregivers, and organisation members. Discussion topics covered lymphoma symptoms, subtypes, diagnosis, stages, and various treatments. Participants were also given opportunities to network and discuss among themselves. Some main themes that emerged were difficulties getting the right diagnosis, and difficulties encountered in hospital settings during course of care.
For WLAD 2018, the organisation aims to partner with France Lymphome Espoir and organisations in other Moroccan cities to open the conference to doctors, more patients, and the public.
Many thanks to you, Abdellah, and your team for all the wonderful support you provide to patients with lymphomas in Morocco.