Seventy-five organizations from around the world have endorsed the new Brain Tumour Patients’ Charter of Rights, a document intended to help initiate positive change in the care of people diagnosed with brain and central nervous system tumours. The Charter provides a framework for the reduction of inequalities in care and the achievement of policy objectives aimed at improving healthcare systems and communications. It can also be used by individual patients to underpin particular aspects of their care. Ultimately, the goal of The Brain Tumour Patients’ Charter of Rights is to achieve the best possible health and quality of life for adults, children and adolescents living with brain tumors by encouraging and supporting quality standards, policies, and practices
SNOSSA (the Society for Neuro-Oncology Sub-Saharan Africa) has announced that their annual conference will take place virtually as a series of two webinars on Saturday, 22nd August and Sunday, 23rd August 2020. Admission will be free. The events start at 13:00 UTC/GMT (15:00 CAT) on these two days.
This will be the third annual meeting of SNOSSA, a society that was formed to improve the outcomes of patients with brain tumours in the sub-Saharan Africa region, and to give them hope. The meeting will offer education on brain/spinal cord tumours, collaboration among participants, interaction between clinicians and patient advocates, and development of a blueprint to foster better care for patients with brain and spinal cord tumours in the region.
The multidisciplinary scientific programme includes a range of eminent local and international speakers, covering topics such as the impact of COVID-19 on brain tumour care in sub-Saharan Africa; epidemiology of brain tumours in Africa; a tumour board and discussion on medulloblastoma; palliative care; the question of tumour banking in Africa and many more topics of interest.
From the patient advocacy perspective, Irene Ngong (the founder of Jacob’s Hope Foundation, a brain tumour patient organisation in Cameroon) will speak on “The Advocacy Playbook: Keeping Motivated and Impactful” and the IBTA’s Kathy Oliver will be speaking on the newly published Brain Tumour Patients’ Charter of Rights and its application in sub-Saharan Africa.
For further details of the programme and to register for the event, please email Dr Teddy Totimeh at email@example.com, stating your name, discipline, institution, city and country.
We at the IBTA are proud and delighted to have had the opportunity to contribute to this new report, entitled Advancing Regulatory Science and Innovation in Healthcare, which has been launched by the Birmingham Health Partners (BHP) Centre for Regulatory Science and Innovation in the UK.
The IBTA alongside Advanced Breast Cancer Global Alliance, International Kidney Cancer Coalition, Global Lung Cancer Coalition, Lymphoma Coalition, Global Colon Cancer Association, World Bladder Cancer Patient Coalition and World Ovarian Cancer Coalition, has issued the following statement on COVID-19:
As representatives of 8 global cancer coalitions and alliances, representing 650 patient advocacy and other cancer organizations and the interests of over 14 million patients around the world, we have united to share the following statement on COVID-19 and a call for a global plan of action for cancer to meet the challenges of future pandemic, s or health crises.
Although in some countries we are seeing encouraging signs that the worst phase of the pandemic is coming to an end albeit with concerns about a potential second wave, in other countries COVID-19 continues to pose severe challenges. However, we believe that this is a crucial time to start addressing how we can restore cancer services safely and effectively and without undue delay where at all possible.
We have seen first-hand the devastating impact that COVID-19 has had on cancer services and patients in many countries including:
- Suspension of many screening and diagnostic services;
- Delays on the part of those with symptoms that could be cancer in seeking medical assessment or postponing planned investigations – which will undoubtedly lead to an increase of cancers diagnosed at later stages and with higher mortality rates;
- Cancellation and/or deferrals of life-saving treatments, including surgery, chemotherapy, immunotherapy, targeted therapy, and radiation;
- Changes in treatment regimens to ones that allow for the best balance between clinical efficacy and protection against exposure to the virus;
- Interruption of vital research and clinical trials that are essential to developing effective future cancer treatments;
- Plummeting incomes for charities and not-for-profit patient advocacy organizations that play a vital role in supporting cancer patients – at a time when these organizations are reporting a significant COVID-19 related increase in demand for information and support, including demand for new information resources that are COVID-19 specific. There is a real threat that this fall in income will mean many cancer patient advocacy organizations will cease to exist;
- The need for these same charities and not-for profits to change working practices almost overnight including major upscaling of technical know-how and equipment, moving face-to-face services and activities to virtual platforms, moving from office to home based working and managing the impact of reduced staff numbers due to financial stresses.
The way forward
We must do whatever is required to combat the impact of the above challenges.
We acknowledge the efforts that have been made by national front-line workers and healthcare systems to deal with the pandemic. We are aware of the tremendous toll that this crisis has had on the physical and emotional well-being of all healthcare workers, including those from cancer services. They must be fully supported to recover from the physical and emotional impact experienced during this time.
We applaud efforts that have been made in some areas to provide cancer patients continued access to the best treatment and care possible. It is especially important that we recognise these good practices as measures that can be implemented in a future health crisis.
- Best practices include:
- Hospitals that are designated or designed as COVID-19 free centres where cancer patients can be treated at much lower risk of catching the virus;
- Where this is not possible, onsite separation of cancer patients who need to visit hospital from those who may have COVID-19. Cancer patients must be confident that they can safely access services;
- A focus to ensure that there is a rapid catch-up to post COVID-19 levels of cancer treatment as well as in screening programs and follow-up investigations;
- Ambulatory services designed to deliver, where practical, safe and possible, treatments or tests at a patient’s home;
- Tele-medicine services – including telephone, online, and virtual connections to healthcare teams and individual clinicians, decreasing the need for in-person hospital visits, particularly for routine follow-up appointments;
- Innovative ways of involving family and carers to participate in consultations where patients may not be allowed to bring anyone with them, for example, through virtual services.
We also know from our own member organizations that there are many excellent examples of good practice in relation to supporting cancer patients during this time, for example, by offering direct access to psychological support services specifically for those experiencing anxiety as a result of COVID-19 and the establishment of app-based support groups.
Indeed, many new services offer the potential to increase accessibility to vital support, not just during a pandemic, but once we return to some state of normality.
The current international health crisis has also seen a sometimes fractured and competitive cancer community come together, with regular online meetings to share experiences, implement new ways of working and, most of all, improve communications. Other key players within the sector (including pharmaceutical, bio-tech, technology and academia) have also come together in innovative collaborations to tackle the COVID-19 challenge.
We believe that actions like those described above should form part of a clear and thorough global plan of action for our cancer communities that can be drawn upon during this, as well as, future pandemics or crises.
At the global and national level, patient advocacy organizations, governments and health services, must work together with other key stakeholders including industry and academia, to ensure that we regain the ground that has been lost to the COVID-19 pandemic.
We the undersigned are here to play our part in this crucial work.
[13 March 2020] On 11 March 2020, The World Health Organisation declared the Coronavirus outbreak a pandemic, the highest level classification the organisation can give. Some people with cancer, including brain tumour patients, are more at risk of becoming seriously ill if they contract the COVID-19 infection.
[25 January 2020] A policy review paper, published in the February 2020 edition of The Lancet Oncology, has for the first time established International standards for the analysis of quality-of-life and patient-reported outcome endpoints in cancer randomised controlled trials