Embracing life after cancer
Free copy Please take one
New programme to boost quality end-of-life care
Virtual tools: The future of cancer support
Supporting you on your cancer journey www.iconsa.co.za
A day in the life of a radiologist
2016 IN RE V IE W R1 BILLION
WORTH OF TREATMENTS SUBMITTED FOR AUTHORISATION
of Out-of-Protocol Treatment Plan reviews resolved within 4 hours of submission
treated by more than 130 ICON
new patients were seen by ICON oncologists
3 100 Radiotherapy patients
ICON CONFERENCE 2016 Record attendance of
This demonstrates the increase in the usage of the e-AuthTM system for the submission of treatment plans by ICON affiliated oncologists and is an indicator of the increase in provision of appropriate care.
10 400 Chemotherapy patients
YEAR ON YEAR GROWTH IN ICON NETWORK ACTIVITY AUTHORISATION COUNT
protocol compliance up from 85.6% in 2015
*of clinically complete plans
Welcome to ICON CARE
the cancer journey As we say farewell to a challenging, yet extremely eventful and successful year, we invite you to read and find inspiration in our Summer issue of the ICON Care Magazine. This is one of our proud resources and it is designed to give patients hope, support and the direction they need to help them along their cancer journey.
In this issue, we look at the journey patients face after surviving cancer and feature the story of Cancer Journey Coach, Brett Simpson (pictured on the cover), who conquered the Himalayas after he conquered Squamous Cell Carcinoma. Since then, he has been working to share his love of life and the outdoors with other cancer survivors and give them the tools they need to embrace wholehearted living. See page 2-3.
is helping to improve the way the disease is managed and treated. See page 4 and 5.
Another inspirational man who is working to help people who are on the cancer journey is Jan Grobler. Janâ€™s company has designed some exciting technology solutions to empower patients to manage their disease â€“ especially people living in remote areas. See page 8.
Regards, The ICON Team
And still with technology, we bring you the story of how ICON is using its state-of-the-art technology platform to gather vital data on the incidence of breast cancer in South Africa that
We also take a look at the new ICON Best Supportive Care Programme (page 10 and 11) that is seeking to prioritise appropriate home-based treatment for end-of-life cancer patients, which could improve their quality of life as well as save costs.
We invite you to share your views and join the conversation. Connect with us at facebook.com/iconsa and check for updates on our website: www.iconsa.co.za ICON CARE
Surviving Cancer, the next steps
YOU HAVE SURVIVED CANCER, NOW WHAT?
t’s a known fact that once you are a cancer patient, you will always be a cancer patient. This is the reality that dawns on survivors of cancer when they reach the end of their treatment. So says Linda Greeff, Manager of Oncology Social Work Services at Cancercare (previously GVI Oncology) and a cancer survivor herself. “Following treatment, a new phase of surveillance and followup care emerges. It is at this point that cancer survivors start realising they have to venture out without the regular interaction of their treatment team, which can be a very scary and daunting prospect.
Some cancer survivors say the realisation that simple things matter ... can cause people to change direction. This period should be a time of empowerment and gaining new strength, says Greeff. But instead it can be a time of fear and loneliness. Survivors need to adjust to the new “normal” and seek new networks of support. Fortunately there are a number of excellent cancer support organisations available to survivors (see pages 6 &7).
Brett Simpson climbing in the Himalayas after surviving cancer.
MOVING TO WHOLEHEARTED LIVING One cancer survivor who sets a great example for how to embrace wholehearted living is Cancer Journey Coach Brett Simpson. Since beating his cancer, Simpson has gone on to climb the Himalayas and cross the finish line of an Iron Man event after 13 hours and 47 minutes of swimming, cycling and running. He has also developed a skincare product specifically designed for people like himself who love the outdoors. In 2007, Simpson was misdiagnosed three times with a lip lesion that was originally thought to be either a fever blister or a cold sore. Squamous Cell Carcinoma was the ultimate culprit and because of the uniquely aggressive nature of his specific case, he went into emergency surgery within 48 hours of diagnosis. He says the final treatment to ensure any rogue malignant cells were annihilated was radium treatment for three months – which stole his beard for good and affected his taste buds for six months, “My life changed, I changed and I was suddenly exposed to my fear of death and, more surprisingly, my fear of living wholeheartedly.” Simpson says: “What you need is a few simple assessment tools that allow you to identify what is working in your life, what isn’t working, and what changes you need to make in order to thrive – not just survive.”
EMBRACING THE POSITIVE “Any experience with cancer is challenging. However, often, amazingly positive things come out after all the trauma is over,” says Greeff. “Some cancer survivors say the realisation that simple things matter – a beautiful sunset or sunrise; a deep breath of clean, fresh air; good friends; supportive loved ones; and the knowledge that life is special – can cause people to change direction, embrace the positive and lead happier, more focused and meaningful lives. “My life’s work is to help more people get there more quickly.” For more information on cancer resources visit page 6 of this magazine or http://www.livestrongcareplan.org/ ICON CARE
Big (breast) data
informs quality, cost-effective cancer treatment in SA
ICON has been gathering data on the incidence of breast cancer in the South African insured population, offering the most comprehensive snapshot of the disease yet.
our out of five patients who present with breast cancer in South Africa in the private sector are likely to survive the disease – according to new data from ICON.
South African women in the insured population is 110 per 100 000. Interestingly, says Jones, this is very close to the US statistics, which stand at 123 per 100 000.
“Early diagnosis and treatment is key to success,” says Dr LeeAnn Jones, Clinical Executive at ICON, who adds that advances in technology and awareness mean that more women are able to identify and successfully treat the disease before it is too late.
Beyond being influenced by lifestyle choices and genetics, these numbers indicate that private healthcare in South Africa mirrors care in the developed world.
“The ICON data for 2014 and 2015 was consistent with 83 and 84% (respectively) of patients presenting with stage one to three of the disease. Less than one in five presented with incurable stage four of the disease,” Jones says. The data further revealed that the incidence of breast cancer in 4
HOW ICON COLLECTS THE DATA ICON currently partners with more than 40 medical schemes across the country, including South Africa’s biggest medical scheme, Discovery Health, and represents more than 80% of the
The system eliminates waste and unnecessary treatment and makes sure that the treatment is appropriate.
private sector oncology fraternity. The network has been gathering data through its eAuth™ system (which speeds up treatment authorisation based on standardised treatment protocols) for several years, from more than 3.5 million insured lives, to create the most comprehensive snapshots of cancer care data in the country to date. “Any authorisation that is submitted through our system is stored in a data warehouse. So, we have access to the patient’s disease status, the staging, the treatments that they’ve had, and we’ll also have what their response to that treatment was. The system eliminates waste and unnecessary treatment and makes sure that the treatment is appropriate.” “The eAuth ™ software is intelligent, it links treatments to specific diagnosis and if you want to go outside of that, you’ve got to motivate. Icon has the only system that does that,” Jones says.
THE IMPORTANCE OF EARLY DETECTION A key finding of the ICON breast data, according to Jones, is that
it underlines the importance of early screening and diagnosis, and that more effort should be spent on raising awareness about the disease. Jones advises that the best way to find pre-malignant or very early (stages of the) disease is through a breast examination or a mammogram, which she explains will pick up disease without symptoms that the patient will not feel at this stage in the illness. She advises screenings every one to two years from the age of 40, so that any subtle changes from one year to the next may be detected. She says it’s important for women to discuss their breast cancer risk factors with their GPs in order to work out the best screening regimen, as women with genetic predispositions will have to start screening before they turn 40. “By the time you can feel the breast cancer, it’s already approximately one-and-a-half to two centimetres in diameter. The one in five patients who present with advanced disease are unlikely to have been undergoing regular screening.” “My message to women everywhere is if you haven’t already – take action and undergo screening,” Jones says. ICON CARE
A helping hand Here to support you on your cancer journey
Cape Town Little Fighters Cancer Trust is an organisation that supports children living with cancer as well as their families. They aim to promote and advocate national childhood cancer awareness as an increase in early detection will increase the survival rate in children.
Website: www.littlefighters.org.za Email: firstname.lastname@example.org Phone: 021 863 0249
A cancer diagnosis can often be bewildering and overwhelming. To assist in guiding patients through this challenging journey, ICON has established a network of social workers, oncologists, radiologists and GPs who work to ensure that patients get the best possible care.
Love your Nuts is a project run by cancer survivor, Torsten
Koehler. It raises awareness on testicular cancer by educating communities about a form of cancer that often remains undetected in young adults due to the multi-cultural, diverse society in South Africa, where cultural taboos, stigmas and lack of knowledge about the subject are plentiful.
Website: www.love-your-nuts.com Email: email@example.com Phone: 021Â 802 0511
Johannesburg Bosom Buddies’ aim is to put to rest the myths surrounding breast cancer and to have an open forum where women feel that they can come forward with their concerns and challenges.
Website: www.bosombuddies.org.za Email: firstname.lastname@example.org
Campaigning for Cancer is an advocacy organisation that aims to give South African patients and those affected by cancer a voice, pioneering cancer advocacy. Campaigning for Cancer lobbies for the promotion and protection of the rights of patients and those affected by cancer with regard to policy, healthcare costs and healthcare delivery.
Phone: 086 028 3343
Website: www.campaign4cancer.co.za Email: email@example.com Phone: 086 127 5669
CHOC, the Childhood Cancer Foundation of South Africa provides a holistic support for children and families suffering from cancer and life-threatening blood disorders. It assists families with accommodation when children are undergoing long-term treatment, provides hospitals with medical equipment and offers several kinds of practical and emotional support to parents.
PinkDrive is the indispensable, tangible breast cancer Public Benefit Organisation (PBO) powering South Africa´s first mobile PinkDrive Mammography Unit and PinkDrive Educational Unit throughout South Africa, driving home the fact that early detection saves lives.
Phone: 086 111 3500
Phone: 011 998 8022
The Cancer Association of South Africa’s (CANSA)
The Sunflower Fund aims to educate and recruit a viable
Phone: 080 022 6622
Phone: 0800 121 082
purpose is to lead the fight against cancer in South Africa. Its mission is to be the preferred non-profit organisation that enables research, educates the public and provides support to all people affected by cancer.
source of well-informed potential bone marrow stem cell donors who are ethnically diverse, in an effort to save the lives of those needing a transplant when suffering from life-threatening blood disorders.
The future of cancer support? Cancer support technologies are emerging in South Africa at a rapid rate, helping to bridge a gap in the healthcare matrix and empowering patients to help themselves.
ccording to the latest statistics from the World Health Organisation (WHO), cancer causes approximately 7.9 million deaths worldwide each year. Of these deaths, 70% or around 5.5 million occur in the developing world. “In South Africa, we are leading the way and finding innovative solutions to tackle cancer and other diseases burdening developing countries, which are now spilling over into other African countries,” says Jan Grobler, co-founder of Community TECH, a non-govermental organisation (NGO) that builds technology solutions for other NGOs, with a particular focus on health and specifically children’s education. Community TECH recently launched Pocket Cancer Support (PCS), a digital platform created in collaboration with cancer organisation, People Living with Cancer (PLWC). For Grobler, the increase in affordability and accessibility of mobile phones and networks in remote areas has been a major game changer in the healthcare landscape for South Africa. Like most of their products, PCS is primarily based on mobile
computing, creating an opportunity to reach anyone with mobile data. The solution starts by building patient profiles to understand the user and then customising information to match their individual needs. Patients may be sent via a chat facility (similar to WhatsApp) or SMS, specific information relevant to their case or directed to the nearest appropriate treatment facility. The application is also able to track a user’s location, which helps PLWC to be proactive in identifying and attending to people immediately. “Facing cancer is daunting and traumatic. Add to that the financial burden that comes with this disease, and lack of access to any adequate healthcare facility or support system, and it is practically unmanageable. This is the reality for many South Africans and the reason for the need to find effective integrated solutions in healthcare delivery in both the public and private sector,” says Dr Ernst Marais, Chief Operating Officer of ICON. ICON is the primary sponsor of the PLWC Limpopo outreach project, where the Pocket Cancer Support platform was first introduced.
A day in the life of a
radiologist Having spent more than two decades as a radiotherapist, Robyn Stewart is an expert in her field. She is also the first to acknowledge that being a radiotherapist requires one to be a little bit of everything â€“ from strategist to counsellor. Q: WHAT EXACTLY DO YOU DO AS A RADIOTHERAPIST AND WHERE DID YOU STUDY? A: I completed my national diploma in radiotherapy at the Cape Peninsula Technikon in 1995. We assist patients who have been diagnosed with cancer, as well as those undergoing radiation treatment. Checking prescriptions given by the oncologist, tracking treatments, advising patients on what to expect, and monitoring treatment side effects are all part of the work that we do.
Q: WHAT IS AN AVERAGE DAY LIKE FOR YOU? A: A run-of-the-mill day for me consists of planning and treating patients with cancer and in some instances, certain benign conditions that are either on the linear accelerator or in the brachytherapy unit, depending on the treatment that they are receiving. On a daily basis, I liaise with the doctors on the best possible treatments and ensure correct treatment delivery. Additionally, I advise doctors and radiographers on what may be delivered in a practical sense and offer input on the energy of the treatments and performance status of the units.
I also need to make sure that our standard operating procedures are current and adhered to. So, I need to be in touch with all the different departments in oncology because we need to work as one unit.
Q: ON A PERSONAL LEVEL, WHAT IS YOUR INTERACTION WITH PATIENTS LIKE, AND CAN YOUR WORK BE EMOTIONALLY DEMANDING? A: We do a lot of counselling for patients, but one needs to maintain quite a fine emotional balance as well. We usually see patients for rather long periods of time and we do form bonds with them. It is also sometimes difficult to keep our patient interactions confidential, while still having to deal with our own emotions. So, we cannot really talk to anyone outside our unit to help us deal emotionally with what we are experiencing. That is why we place a lot of importance on being able to counsel one another within the group and debrief team members.
Q: WOULD YOU SAY THAT THERE IS A NEED FOR NEW ATTITUDES OR MAJOR CHANGES IN THE ONCOLOGY SECTOR? A: We have so many world-class professionals in this country and we are streets ahead of the rest of Africa right now. South Africa is, in fact, a major training ground for the rest of Africa. But I believe that we must not lose sight of the fact that there is always work to be done. A big issue that I see, especially in the public sector, is how long waiting lists can be. All of the principles of human rights are in place, yet patients can wait for months for their treatment. It is important for us to use the resources at our disposal, and to make an impact on the types of treatment available. It is our duty to strive to be better and achieve more.
Improved access to
New programme to allow patients to die at home with dignity
A new ICON programme seeks to prioritise appropriate home-based treatment for end-of-life cancer patients to improve patient quality of life and save costs.
Death is not a pleasant subject, but in terms of medical care, itâ€™s an important one, say oncology specialists from the Independent Clinical Oncology Network (ICON). The network is once again pushing the boundaries in its quest to improve health care quality while cutting costs, and has announced a new programme to help cancer patients who have reached the end of anti-cancer treatment to access better end-of-life care through their medical aid.
The move will effectively put the money that would have been spent on unnecessary treatment and long stays in hospital towards supportive care that allows patients to die with greater dignity and comfort at home. At present, many medical aids provide limited funds to manage terminal cancer patients who wish to spend their last days at home, rather than in hospitals. This has resulted in high costs for
International studies show that effective palliative care can significantly reduce healthcare costs... end-of-life cancer care, says Dr David Eedes, Clinical Oncology Advisor at ICON. Dubbed the Best Supportive Care Programme, this initiative will take a more realistic look at palliative care, prioritising appropriate home-based treatment rather than wasteful in-hospital expenditure. Palliative care has been described as “severely neglected” in South Africa, and Eedes says a lack of funding is a key factor. This pressure, he believes, could be greatly relieved if funds were used more effectively. “International studies show that effective palliative care can significantly reduce healthcare costs; it’s also associated with improved patient and caregiver satisfaction, better symptom control and a greater likelihood of the patient dying in their preferred environment. In Spain, similar monitoring revealed that more effective palliative care saved the country millions of Euros each year. “Controlling or reducing the cost of palliative care by supporting a home-based approach could therefore benefit the healthcare system, families and individuals, while relieving pressure on healthcare resources,” says Eedes. One complication, argues Eedes, is that for many facilities and medical schemes, palliative care is understood to be necessary only when death is imminent. But ICON believes that funding for such care should begin earlier. Once a patient is diagnosed with an incurable cancer, the palliative care discussion should start. When
the time comes to stop anti-cancer treatments and concentrate on quality of life, the patient and family should be prepared and ready to go onto a programme like Best Supportive Care. “We are encouraging medical schemes to offer more comprehensive financial support, not only in terms of appropriate pain treatment, but also all the other aspects of palliative care, with the aim to manage patients at home – the environment they are most comfortable in,” he says. The early discussion about appropriate palliative care is a difficult, but important one for the doctor, the patient and the family, Eedes noted at the recent ICON conference, where the Best Supportive Care Programme was launched. Citing examples where poor communication left patients and loved ones “angry, unsatisfied and [feeling] short-changed”. Eedes argues for a more realistic approach towards terminal illness. The main aim of the Best Supportive Care Programme is the alleviation of symptoms and improving quality of life, and would not include anti-cancer treatment. Many challenges need to be overcome to ensure the success of this programme, said Eedes. These included early buy-in from
We are encouraging medical schemes to offer more comprehensive financial support. the ICON doctors as well as the funders. The establishment of functional palliative support networks nationally, especially in under-resourced areas will be crucial. ICON, under its umbrella organisation, ISIMO, is looking at ways to operationalise this programme so that a start can be made in 2017. ICON CARE
Tel: 021 944 3750 Fax: 021 949 4112 Email: firstname.lastname@example.org Physical address: 2nd floor, Madison Square Park 4 Howick Close, Tyger Falls C/O Bill Bezuidenhout Avenue & Carl Cronje Drive Tygervalley, 7530 Cape Town, South Africa