A Start -10 Draft Cancer Prescribed Minimum Benefits (PMBs) + plus 1 added

PMBs are a vital tool used by medical schemes because they explain the minimum services for which your medical scheme will pay. These are the “benefits” of belonging to a private medical scheme. As beneficiaries, we must know about these rather than the number of free movies!

The PMBs have been a bone of contention for over a decade because they are outdated and don’t reflect current practice and care. Usually to the user’s detriment. The custodian of PMBs is the Council for Medical Schemes (CMS). Remember, PMBs are just as important for public sector care as this is the process that will be used to start the NHI care benefits.

NCDs categories at last

A recently published draft PMB benefit classification refocuses on health services. The change, from long-criticised disease /condition related benefit packages to one based on services, is welcomed. Look at the draft, it and give your comments. These are your health care benefits which serve as a minimum package that must be available in different settings from a primary care setting to hospitals.

More work is needed to further expand the categories to include the setting in which the service must be accessed:

The classification includes NCDs and communicable diseases in one category. This is probably meant to reflect that the chronic and comorbid nature of the conditions: The SA NCDA hopes it heralds integrated health care. These are the elements of NCDs care:

  • Screening and assessment of risk factors and co-morbidities
  • Initiation of early treatment
  • Screening and management of complications
  • Follow up and monitoring of treatment adherence
  • Interpretation of common laboratory and radiological results
  • Specialised geriatric care, including foot care
  • Referral to a higher level of care when required.

PMB cancer definition starts

The  PMB Benefit Definition Project (started in 2010) must clarify the benefits to which medical scheme users are entitled in terms of the Medical Schemes Act (131 of 1998). Sadly, these guidelines lack a legal status.

The project is a CMS-led process that uses criteria to define the prevention and treatment for a specific condition. There are lots and lots of conditions to get through. Cervical cancer, a major problem, has yet to be published.
A CMS-appointed Clinical Advisory Committee (one per medical discipline) with members drawn from medical and health professions, funders (medical schemes) and patient groups. However, the mechanism of patient group involvement is neither clear nor transparent. Patient groups need to be vigilant on this matter as the CMS does not have a clean record of including patients or “users” in a meaningful way.

Eleven  PMB draft definitions released in the last year all relate to cancer. Medical scheme users should comment to make it relevant. There is no time limit for comments stated in the drafts but another newsletter version shows it to be about 3 weeks from release date. However, you are encouraged to comment no matter the timeline as these are your benefits and make sure that they meet your needs.

Draft PMB definition guideline title with links Date released
1.     Non-small cell lung cancer 26 Feb 2018
2.     Medical nutrition therapy in palliative care (adults) 12 Feb 2018
3.     Small cell lung cancer 1 Feb 2018
4.     Mesothelioma 25 Jan 2018
5.     Hepatocellular carcinoma 6 Dec 2017
6.     Early stage colon and rectal cancer 2nd edition 4 Sept 2017
7.     Metastatic colon and rectal cancer 2nd edition 4 Sept 2017
8.     Early stage pancreatic cancer 2nd Edition 31 Mar 2017
9.     Early stage oesophageal cancer 2nd edition 31 Mar 2017
10.  Best supportive care for 4 cancers 2nd edition 31 Mar 2017
11.  Early stage gastric/ gastro-oesophageal junction cancer 2nd edition 31 Mar 2017

CMS Script on oesophageal cancer

Health Promotion Levy passed – Where to From Here?

With the first and biggest battle won against NCDs at the end of 2017, the Health Promotion Levy (HPL) comes into effect from April 2018.

The tax works in the following way, the first 4g of sugar per 100ml in a drink is exempt from taxation. Any sugar after this is charged at a rate of 2.1c per gram. If a company does not give the exact sugar content of its drink, it will be taxed at a base rate of 20g per 100ml. This tax would see certain drinks like Coca-Cola being taxed 10% of the can.

The second win is the establishment of an NCDs Commission within the frame work of the National Health Insurance. The Commission’s purpose is to coordinate policy and action across government and society to maximize NCDs prevention and control. Its official name is the South African National Health Commission. Combined with the HPL, this will go a great distance to an NCDs free future for all South Africans.

By calling the sugar tax a “health promotion levy” the intention to use a portion for health promotion work. However, there is no clear outline or understanding of how the collections will be spent or allocated.
The SANCDA along with it civil society partners and stakeholders are lobbying for the money to be used to directly fund the fight against NCDs. It is important to have clear measurable plans with a budget to fund education, civil society action, screening and treatment of people at risk and living with NCDs.

The people of South Africa deserve to have a fighting chance against the scourge of NCDs gripping the nation and civil society is best equipped to take this fight to the most basic of ground level where the government cannot or struggles to reach.

Our Views Our Voices – Rakiya’s story from Nigeria – Weekly Highlight

Each week we will be highlighting a story from the NCD Alliance’s Our Views Our Voices campaign. This week is the story of Rakiya from Nigeria, a woman living with Type 2 Diabetes and Arthritis this is her story.

Our Views, Our Voices

Our Views, Our Voices is an initiative that seeks to meaningfully involve people living with NCDs in the NCD response, supporting and enabling individuals to share their views to take action and drive change.

Our Views, Our Voices is a five-year initiative (2016-2020) built around four main pillars of work: consultation, campaigns, communications, and capacity development.

Read and learn more about the ADVOCACY AGENDA OF PEOPLE LIVING WITH NCDs

Rare Diseases South Africa – Annual Report 2017

Over the last few months, Rare Diseases SA has spent time revising their strategic focus.

Whilst we know that there are many challenges which affect the global rare disease population at large, we also have realized that there are many local challenges which need to be addressed.

In line with our mission of advocating and facilitating engagement between those with the ability to prevent, intervene, treat and provide supportive care for those impacted by rare diseases, the decision was made to invite all stakeholders to a meeting where we could engage on the various issues identified.

Invites were sent to organs of state, funders, fund administrators, healthcare professionals, support groups, industry partners and civil society.

Presentations by Kelly du Plessis (CEO of Rare Diseases SA), Dr Helen Malherbe (Chair of Genetic Alliance SA) and Nicole Capper (A functional pharmacist, Mrs South Africa finalist, and parent to a rare patient) were presented.

Many challenges exist in South Africa in terms of rare disease, but, there are also larger healthcare challenges which need to be taken into consideration when navigating the rare disease patient journey.

These include: 

  • Limited Financial resources regarding individual patient advocacy
  • Culture of apathy amongst South African healthcare consumers
  • Cultural, class, literacy diversity of South Africa
  • Patients lack of understanding on entitlement to rights
  • Accessibility of information
  • Escalation processes are cumbersome and ineffective
  • Supportive care is often the only possible intervention and is often not recognized as a medical need.
  • Treatment decisions are based on cost alone.

Poor lead times from diagnosis to treatment, inaccurate diagnosis, unregistered treatments continue to minimize access for patients.


Key problem challenges in South Africa

Over the last 4 years of operation, and particularly following the successful RareX conference last year, the following were identified as key problem areas which required urgent attention:

  • The need for a definitive definition of a “rare disease” within the SA context.
  • The need for big data in terms of the threat of rare diseases in South Africa, patient numbers, and treatment outcomes.
  • Guidelines and Clinical protocols are required for the effective treatment and management of rare diseases.
  • Rare diseases are underdiagnosed and underfunded in South Africa and existing resources are not employed to ensure maximum return on investment, efficiency or efficacy.
  • No existing culture of collaboration between stakeholders – focus of support groups is very singular and disease specific.
  • A comprehensive legislative and regulatory framework exists however, implementation has been fragmented and unsustained, particularly within the area of Rare Diseases.


The Q & A session provided for some very meaningful engagement.

Key take-home points were raised by members of the audience for discussion and consideration including:

  1. Newborn Screening and the need for discussion on how this could be carried out in a cost effective and ethical manner.
  2. Patient Registry: How could a registry be created which allows for raw data to be collected in a responsible manner without placing further strain of an under resourced community.
  3. Caregiver fatigue: implementing plans, and guidelines to not only recognize caregiver burnout, but to appropriately address the challenges faced in this regard.
  4. The health market inquiry: civil society engagement is critical to ensuring patient-centricity
  5. Collaboration: A joint effort between all stakeholders in required to ensure that the objectives are met.
  6. Medical training: specifically, on congenital disorders is lacking. Capacity building in this regard is urgently required.
  7. ICD 10/11 code revision: A call for collective comments, and inputs is required to ensure that rare diseases are included in the revised coding.


New strategic objectives

Rare Diseases SA has therefore decided on the following key focus areas for the next 5 years.

Patient navigationEnsure a challenge-free, supported journey from presentation of symptoms to end-of-life for patients affected by rare diseases.

  1.  Develop clinical guidelines and referral pathways for identified rare diseases in South Africa.
  2. Provide referral services for both treatment and support to patients with rare diseases.
  3. Develop patient information/ educational material relating to: diseases, treatment, and supportive services.
  4. Provide case management services for patients requiring treatment.
  5. Provide tools and resource material to improve patient journey.

Advocacy and expanding access: Represent patients affected by rare diseases with regards to policy, healthcare costs and delivery.

  1. Create a united voice in the rare disease community.
  2. Contribute and participate in policy development and service delivery
  3. Monitor service delivery relating to rare diseases
  4. Facilitate development and maintenance of patient registries
  5. Civil society: incorporate principles included in rare disease patient charter in advocacy efforts


Community Engagement: Collaborate with civil society to ensure greater awareness and networking platforms for rare diseases in South Africa.

  1. Create awareness events and campaigns relating to rare diseases
  2. Develop and distribute educational material and campaigns for the public and targeted stakeholders.
  3. Develop and participate in civil society alliances with linkages to the rare disease patient journey


Whilst these objectives seem out of reach, we are confident that with the right support, and collaborative efforts amounts all stakeholders, that they are possible.

We look forward to engaging with you on how best we can improve the life’s of those impacted by rare diseases and continue towards our vision of a South Africa where those impacted by rare diseases access life-saving treatment and supportive care for improved quality of life. 

Kelly du Plessis
CEO of Rare Diseases SA

Isibindi – Research Report on Experiences of The Disability Facilitators

Please note that the SANCD Alliance does not hold the right to this content and it belongs to the original writer and the Department of Social Development. 

To view the Isibindi webpage please follow the link: http://www.naccw.org.za/isibindi


The Department of Social Development, in partnership the National Association of Child Care Workers, have been piloting a community-based care and protection intervention option for children over the past year.  The programme is called Isibindi – ‘courage’ in IsiZulu.  Articulating national policy in a ‘turnkey’ model, Isibindi projects are implemented by local organisations and communities, with the support of the social development authorities and donors, in the social service equivalent of a franchise. Linking community-based organisations with a national support network and information feed, Isibindi enables poorly resourced communities to adopt an evidence-based approach to the provision of integrated welfare services, and rapidly develop effective and informed local care and protection services for children.

Almost 300 Isibindi projects have been replicated across South African provinces, serving over 100 000 children who would otherwise have fallen outside of the care and protection matrix. Including quality assurance mechanisms, and a community development approach, the Isibindi model has received public acclaim, and is currently being scaled up through a South African government initiative. Additional components of the model include a Young Women’s Empowerment Program, a Young Men’s Empowerment Program, a non-centre based ECD model and a Disability model – all of which enable progressive realisation of a wide range of children’s rights and protection needs, through effective deployment of community-based child and youth care workers.

Child and youth care work is an emerging social service profession encompassing a body of research, theory and skill, pertaining to meeting the normal developmental needs of children and youth, as well as their deeper therapeutic needs.  A defining aspect of child and youth care work is that it is practiced in the life-space of children, so that the physical context of the work is where children are at any moment – in their homes, in the community, in school, or in the street. The Isibindi model trains unemployed people selected by their communities in an accredited child and youth care training, employing them to support vulnerable children and families in their own communities – while creating jobs and setting workers on a career in a recognised discipline.

The core of the Isibindi model is the provision of child and youth care services to children and youth in their homes by the trained and supervised child and youth care workers (CYCWs). CYCWs connect with children and build relationships with them through the use of daily life events – they help the family with basic household chores and educate about general hygiene, gardening, health, nutrition, and household care. They cook together with children, teach basic life skills and build resilience – using ordinary human interaction as a context and a means for transcending basic care to meet the emotional needs of children – especially in child headed and parentless families. This higher level engagement is described by one child burdened with the care of three younger siblings in the words “… Auntie helped me dream my dreams again…”

The Isibindi Safe Park model provides a range of services in a community – a place for children to be – to play under the supervision of CYCWs, receive educational support, hear traditional stories and celebrate national calendar days. Currently being replicated in Zambia, the Isibindi model is adapted by grassroots implementers to suit local conditions and cultural contexts – within the framework of the overarching commitment to the realisation of children’s rights, and the building of a children’s workforce to give effect to such rights – even in the most remote and poorly resourced communities.

Community members are trained as professional CYCWs. They all live within easy distance of their clients. Their primary goal is to provide daily practical and therapeutic assistance to children and youth in their life-space.

Practical assistance includes:

  • Helping with the preparation of meals
  • Cleaning the house with the children and caregivers
  • Accompanying family members to the clinic and overseeing the taking of medication
  • Assisting the family with application for birth certificates
  • Helping the family to budget

The therapeutic elements includes:

  • Teaching life skills – relationship building, problem solving, conflict resolution, dealing with stress
  • Assessing and referral of children and families – health, trauma, education, need for material assistance relating to severe food insecurity and crises
  • Transferral of knowledge and skills – HIV/AIDS awareness, testing and management, safety, nutrition and educational assistance
  • Life-space counselling – in the moment assistance with difficult situations of conflict, crisis, stress and grief

Services are planned around each child and her/his family/caregivers within the context of a multi-disciplinary team. Professionals such as child and youth care workers, social workers, probation officers, doctors/clinic staff, NACCW mentors as well as family members and the young person her/himself can make up this team.

The Isibindi Model has almost from the start mainstreamed children with disabilities in the programme.  The Disability Model, implemented by Disability Facilitators, ensures that children with disabilities have equal access to assistance, and is often the only assistance children with disabilities and their families, living in remote rural communities and under-serviced areas, access.


The Isibindi Model is therefore an important programme to learn from as we implement the White Paper on the Rights of Persons with Disabilities, and in particular as it relates to the principles and processes informing disability rights mainstreaming, as well as Pillar 4 on supporting the empowerment of persons with disabilities and Pillar 2 on reducing the risk of compounded marginalisation.

The attached research report on experiences of the disability facilitators make for extremely interesting reading in informing our individual and collective efforts to strengthen programmes which foster inclusion of children with disabilities.

To download the Research Report on Experiences of The Disability Facilitators