The NCD Alliance is consulting with people living with a range of NCDs, including care partners on the following:
The experience of living with/managing NCD conditions during the COVID-19 pandemic
Their recommendations to shape stronger health systems and more resilient communities as part of and beyond the COVID-19 response
Their perspectives to inform a Global Charter on the Meaningful Involvement of People Living with NCDs planned for 2021, aiming to promote an NCD response that puts people first
The online consultation survey is available in three languages: English, Spanish or French. The surveywill close on Sunday, 25 October 2020.
#NCDVoices Stronger, Together: We invite you to share the consultation survey with your networks of people living with NCDs!
Read more about the Our Views, Our Voices initiative here. If you have any questions or clarifications, please feel free to contact Manjusha Chatterjee at [email protected]
Dr Vicki Pinkney-Atkinson, Director of SA NCD Alliance says, “People living with NCDs believe it’s a health right to have proper access to care and medicines, especially now during a time of pandemic. Before COVID-19, the NCDs group of conditions killed most South Africans and remained neglected within government policy and budgets. For so long the many millions of people living with NCDs have lamented, ‘it would be better if I had HIV, then I would get access to quality care and medicines.”
NCDs, called underlying conditions during COVID-19, cause most deaths in South Africa. Diabetes kills more women than any other single illness for many years. (1) Government media acknowledge that 90% of those who die following COVID-19 infection had one or more NCD. (2)
Act on NCDs Now – Accountability
The early figures coming out of Wuhan showed that NCDs increased the risk of complications and dying. It was clear that survival depended on well-managed conditions such as diabetes. It immediately exposed the fault lines in NCDs care.
The aim is to get government to implement ongoing care for those living with NCDs by health workers during and beyond COVID-19. This includes ensuring adequate supply of medications that don’t involve travel and visits to facilities and making use of online and tools for consultations to minimise physical interaction and exposure.
The Alliance further proposes performance indicators to assess government’s response to COVID-19 and ongoing NCDs care such as maintenance of food and medicine supply chains, protection and support for vulnerable and neglected people and maintenance of usual health services.
“As South Africans went into lockdown in March, the SA NCDs Alliance initiated online support, counselling and information services to keep people healthy such as the diabetes care line. Those of us living with diabetes soon learned that optimal blood sugar control is the best way to survive a COVID-19 infection. However, getting care and a regular supply of medicines in the public sector involved a stark choice; get your medications or get the virus. Unlike for HIV and TB, a remote non-clinic supply point is a rare option. Insulin, absolutely critical to sustain life in diabetes, is only available at a hospital-level even if there is a clinic next door,” elaborated Pinkney-Atkinson.
Zodwa Sithole, Head of Advocacy for CANSA added, “Patients are feeling frustrated and despondent as they struggle to access vital support services. A cancer patient’s low immunity and high infection risk for COVID-19, results in anxiety and physical distancing and hygiene measures add to a feeling of isolation even as lockdown levels are eased. Part of the response was the launch of our CANSA Tele Counselling service offering free, confidential cancer-related telephonic counselling available in seven languages.”
Nosipho (3) puts the human face on the access issue. In late pregnancy, she always needs insulin and asthma medication. Being a savvy diabetic, she knows she is at risk and tries to avoid the minimum five-hour round trip to get her insulin in central Cape Town during the COVID-19 surge. She knows that the risk of infection is high by using public transport and the long waiting lines at the hospital. When asked, the government sectors were unable to offer a solution.
For other NCDs like cancer, there are implications of delaying any screening that can result in cancers being detected at a later stage and affecting treatment outcomes.
Pinkney-Atkinson concludes, “What works to keep diabetics and other people living with NCDs safe, is not a mystery. There is plenty of evidence, we need action to provide ongoing NCDs care during COVID-19. (4) During the COVID-19 pandemic and beyond, we must go beyond stopping the virus and our right to get our ongoing essential services safely. We need these drugs and supplies (needles and syringes) to stay alive.”
For more information, please contact Dr Vicki Pinkney-Atkinson, Director of SA NCD Alliance at email [email protected]
Call 083 38 38-159. Alternate contact is Lucy Balona, Head: Marketing and Communication at CANSA at email [email protected].
Call 011 616 7662 or mobile 082 459 5230.
References:
(1) Statistics South Africa. Mortality and causes of death in South Africa, 2016: Findings from death notification [Internet]. Pretoria; 2018 [cited 2018 Mar 28]. Available from: http://www.statssa.gov.za/publications/P03093/P030932016.pdf
(2) SA Government News Agency. SA COVID-19 cases rise to 3 034. SANews.gov.za. 2020;2
(3) Not her real name
(4) Young T, Schoonees A, Lachman A, Kalula S, Mabweazara S, Musa E, et al. Taking stock of the evidence. Cape Town: Better Health Programme South Africa; 2020. 50 p
About NCDs+
NCDs are a large group of health conditions that are generally not spread from person to person and used to be called chronic illness until 2000 when the Millennium Develop Goals force a new definition. Often the 5 main NCDs groups of conditions are noted: diabetes, circulatory disorders, mental health, cancer, and chronic respiratory illnesses. However, there are many more conditions that do not get a mention. Globally NCDs conditions are responsible for 41 million deaths annually and they are leading cause of death in South Africa since 2013. Diabetes is the leading cause of death of South African women.
However, the NCDs agenda is not just about illness it goes to a whole of society and whole of government response and for this we need an expanded understanding, meaning, NCDs+. The expanded NCDs+ advocacy agenda includes prevention, vulnerable populations, stigma control and disability. NCDs+ has many determinants (social, economic, and commercial) that disproportionately impact poor people. The Sustainable Development Goals (SDGs) address NCDs+ and its inclusion as an equal part of universal health coverage. (National Health Insurance in South Africa).
About the SA NCDs Alliance
The SA NCDs Alliance, established in 7 years ago, is a civil society partnership between three trusted NCDs advocacy organisations: CANSA, Diabetes SA and the Heart & Stroke Foundation SA.
Its mission is for the people of South Africa have equitable access to quality NCDs+ prevention and management within universal health coverage/ NHI.
For this important COVID-19 and NCDs+ advocacy project nearly 90 civil society organisations are collaborating:
The SA NCDs Alliance’s goal in this programme it to ensure that the policy window of opportunity opened by the COVID-19 pandemic is used to make NCDs a priority in government policy through collaboration with NCDs civil society to put it on a par with HIV & TB. www.sancda.org.za
24 June 2020 – This Nelson Mandela Day CANSA gives back to cancer patients, those affected by cancer and caregivers by launching its CANSA Tele Counselling service. This is confidential, professional, cancer-related telephonic counselling to cancer patients, caregivers and their families and parents or guardians of children living with cancer. Counselling is available in seven languages (English, Afrikaans, isiXhosa, isiZulu, siSwati, Sesotho and Setswana) and is free of charge. #CANSATeleCounselling #ConnectWithHope #MandelaDay
Gerda Strauss, CANSA’s Head of Service Delivery says, “We challenge all to take action and to inspire change this Mandela Day, by donating and sponsoring 67 minutes of counselling. Help us with the costs and expenses to run the service and provide continued in-service training and debriefing sessions to counsellors. We don’t want to add the burden of payment for these sessions to those who are already battling, so we need your help. Even Madiba, when he was first diagnosed with prostate cancer in 2001, reached out to CANSA and benefitted from our support and we’d like to be there for more patients and loved ones and connect with hope. Our launch includes a webinar in mid-August to health professionals to celebrate this Tele Counselling, in addition to our face-to-face counselling services since 1931.”
CANSA has been developing an in-house telephonic counselling service for some time as cancer takes a psychological, emotional and physical toll on cancer patients. This service has just been accelerated due to the limited specialised support available to cancer patients, their caregivers and families during the lockdown period, when face-to-face contact and limited virtual support is not always possible as a result of the COVID-19 pandemic.
Strauss adds, “Patients are feeling frustrated and despondent as they struggle to access vital support services. A cancer patient’s low immunity and high infection risk for COVID-19, results in anxiety and social distancing and hygiene measures add to a feeling of isolation even as lockdown levels are eased. So, this is the perfect time to launch the telephonic counselling. The establishment of this service will not only serve patients during this difficult period, but will become a permanent care and support offering, enabling patients who live far from our Care Centres to also access support and in a language of choice. It’s available during normal business hours.”
“We’re thrilled and thankful that we can partner with Novartis and Roche who made it possible for CANSA to establish and set up this specialised support system in place for cancer patients and loved ones,” concluded Strauss.
CANSA Tele Counselling can be accessed via the CANSA Help Desk on 0800 22 66 22 toll-free to make an appointment with a CANSA counsellor. Or send an email to [email protected].
(For more information, please contact Lucy Balona, Head: Marketing and Communication at CANSA at email [email protected]. Call 011 616 7662 or mobile 082 459 5230.)
About CANSA
CANSA offers a unique integrated service to the public and to all people affected by cancer. CANSA is a leading role-player in cancer research and the scientific findings and knowledge gained from our research are used to realign our health programmes, as well as strengthen our watchdog role to the greater benefit of the public. Our health programmes comprise health and education campaigns; CANSA Care Centres that offer a wide range of care and support services to those affected by cancer; stoma and other clinical support; medical equipment hire, as well as a toll-free line to offer information and support. We also supply patient care and support in the form of 11 CANSA Care Homes in the main metropolitan areas for out-of-town cancer patients and CANSA-TLC lodging for parents and guardians of children undergoing cancer treatment.
This post puts the UN High-level Meeting for NCDs priorities in a South African context. It does not dilute the global call but pegs the South Africa response.
1 Put people first
People living with, at risk of and affected by NCDs (PLWNCDs), young people, and civil society must be at the heart of the NCDs response.
For over 20 years the South African policy of Batho Pele or “people first.” The Life Esidimeni mental health tragedy it is clear that much more needs to be done to include us. No more talk. #EnoughNCDs.
Empowering and involving PLWNCDs and young people has been neglected. The knowledge held by PLWNCDs is undervalued in NCDs programme development, implementation and policy-making. They are under-represented as leaders and in organisations they are largely silent in decision-making processes. Let’s correct this state of affairs to realise the rights and responsibilities of PLWNCDs , which require supportive political, legal, and social environments that give all people the opportunity to speak up, especially those most vulnerable and disenfranchised. Let’s start with the South Africa National Health Commission as a key NHI platform for multisectoral stakeholder engagement and policy coherence.
A close connection with communities, civil society organisations (CSOs) provide people affected by NCDs with an essential voice in decision-making processes. CSOs raise public demand and engage with and apply concerted pressure on governments to ensure that resources and services reach and benefit affected communities, as well as hold governments and other sectors to account. Investing in civil society must be recognised as part of the global public good agenda.
2 Boost NCD investment
Scaling up investment for NCDs is a critical priority to achieve the 2025 NCD targets & the SDGs.
Sustainable and adequate resources for NCDs are severely lacking and remain a bottleneck in the response. NCDs receive just 1.3% of development assistance for health, making NCDs the only major global health priority without international financing. Closing the resource gap will require multiple financing sources, depending on the country-specific context. The expected result will be a blended stream of financing, including creating and optimising fiscal space for NCD investment domestically, exploring innovating financing mechanisms (such as taxation of unhealthy commodities), multilateral/bilateral funding, private sector engagement, and catalytic mechanisms, in line with the recommendations from the Third International Conference on Financing for Development in 2015. While domestic resource mobilisation is critical, for low-income countries allocating less than 5% of the gross domestic product to health, progress on NCDs will be impossible without catalytic funding from donors.
At a NDoH level the
3 Step up action against all forms of childhood malnutrition including obesity
Childhood obesity is an issue with a clear health and economic imperative for action.
Global political targets exist to ensure a ‘zero increase in overweight in under 5s’ and a ‘zero increase in obesity and diabetes’, and a WHO Implementation Plan to End Childhood Obesity to guide the response, centering around a set of population-based interventions. With insufficient progress to date and driven by unsustainable, unhealthy food systems and environments, childhood obesity is a major challenge that extends well beyond the health sector and demands political attention at the highest political level.
4 Adopt smart fiscal policies that promote health
South Africa has implemented tobacco, alcohol and sugar sweetened beverage taxes.
The tax on sugar sweetened beverages, the Health Promotion Levy (HPL) came into effect on less than a month ago and took 2 years of negotiations and activism. The tax is instituted with compromise 2,1 c per gram of sugar per 100 ml of the drink. A portion of the HPL is to be used for health promotion and treatment, hence the name.
In the 2018/19 financial year, Treasury has allocated R100 million to the National Department of Health from the HPL. Dr Yogan Pillay (Deputy Director General NDoH Programmes) confirmed, in a meeting this month, that R93 million is to be allocated for human resources to treat people living with cancer. The remaining R7 million is set to be used for a health promotion campaign for cancer prevention.
Alcohol and tobacco taxes taxes go into the broader fiscus with no directed health allocation. In the health budget on Furthermore, the money needs to be spent in the right places tackling the largest burden NCDs facing the country.In South Africa, we have adopted 3 major healthy lifestyle taxes to curb NCD risk factors and utilise the money collected to benefit the broader population.
5 Save lives through equitable access to NCD treatment & NHI
Access to prevention and treatment is a fundamental human right so that we can achieve the highest possible standard of physical and mental health and well-being.
Section 27 of the South African constitution entrenches the right to health and care. a number of law cases have upheld this view. The NHI programme for universal health coverage and access (UHC+A) is in Phase 2 of its roll out. NCDs prevention and treatment needs firm embedding.
Availability and access to lifesaving treatment, care and support for PLWNCDs is still out of reach for millions of African people almost all of whom live low- and middle-income countries LMICs).
This is despite global targets for 2025 to ensure 80% availability of essential medicines and technologies for NCDs. In South Africa for example, there is no state procurement of diabetes blood testing equipment and strips. Sadly the leading the leading cause of death in women and the group combination of diabetes, heart and vascular disease the number 1 killer over.
Access challenges relate to weak health systems in many LMICs, including the lack of adequate preparation and training of the health workforce, insufficient financial resources, poor procurement policies and weak supply chains, inefficient information systems, and lack of patient education and low health literacy.
Reducing the burden of NCDs is essential to achieve SDG UHC+A (Target 3.8) and the SDGs, goals focus on ending poverty in all forms everywhere and reducing inequalities within and among countries. Integration of NCD prevention and treatment the NHI programme and a strong focus on equity is fundamental to strengthen health systems to deliver for NCDs throughout the life-course and protect against financial hardship.
6 Improve accountability for progress, results & resources
Accountability is a crucial force for political and programmatic change.
Accountability is cyclical process of monitoring, review and action, accountability enables the tracking of commitments, resources, and results and provides information on what works and why, what needs improving, and that requires increased attention.
Accountability ensures that decision-makers have the information required to
meet the health needs and realise the rights of all people at risk of or living with NCDs. Multiple sets of commitments and targets for NCDs exist at the global level, as set out in the WHO Global NCD Action Plan and Monitoring Framework on NCDs, the 2014 UN Review Outcome Document, and the SDGs. Existing WHO and UN accountability mechanisms for NCDs can be complemented by independent accountability mechanisms, and at the national level, there is a need to strengthen accountability mechanisms, national targets, and improve data collection and surveillance systems.
In September 2018 the United Nations High-Level Meeting on NCDs (UN HLM NCDs) takes place. People around the world are joining together to say: “We have had #EnoughNCDs and action is needed. Now!”
The SANCDA joins the global campaign convened by NCD Alliance together with our global network of people and organizations. We demand that our government prioritize NCDs as they have promised to do since 2011. So we are calling for governments to act going into the UN HLM NCDs.
This is what we are asking for as South Africans:
1. Put people first – you and me who live every day with NCDs.
2. Boost NCD investment so that empty promises stop and there is NCDs action.
3. Step up action on childhood obesity but don’t forget to beat childhood malnutritionin all of its forms.
4. Adopt smart fiscal policies that promote health and then put some money into NCDs prevention and treatment.
5. Save lives through equitable access to NCDs treatment through universal health coverage (NHI).
6. Improve government accountability to the people for progress, results and resources.
Please join us! You can show your support for the cause by championing a leader or personality who will support the fight against NCDs. Please contact us with your ideas and suggestions. We would love to hear from you. requests. For further information please checkin the back with the SANCDA for more on the movement and campaign as it progresses.