August 2015’s POW-WOW: Policy Production Progress

“The test of our PROGRESS 

is not whether we add more to the abundance of those who have much;

it is whether we provide enough for those who have too little.”  

 

~ Franklin D. Roosevelt

 

Nestled alongside Mowbray’s Main Road, whooshed past by hustling taxis, bicycling students and colourful Capetonian pedestrians, CANSA‘s Cape Town headquarters houses a passionate team of people who’ve made it their mission to research cancer causes and treatments, educate South Africans about cancer – and provide invaluably expert and heartfelt support to those affected by cancer. And on Wednesday, this matronly old building was host to a boisterously excited group of ABC representatives who were meeting to discuss the group’s most recent efforts and subsequent successes, as well as develop their ongoing goal-driven strategy  → lobbying government to create and implement an equitable breast health policy for all South Africans.

ABC - Advocates for Breast Cancer - Team
Unfortunately not all of our determined damsels were able to be at the meeting — but fortunately, it was because they were so busy making a difference!

“Alone we can do so little; together we can do so much.” ~Helen Keller 

 

In case you’ve just arrived to join us on this tremendous project, are members are featured below! We’re proud to welcome Wings of Hope  to our flock!

(Click on their logo to visit their website – and read more here!)

Advocates for Breast Cancer - Wings of Hope NGO

ABC - Advocates for Breast Cancer - Reach for Recovery

ABC - Advocates for Breast Cancer - Project Flamingo - amaBele Belles

ABC - Advocates for Breast Cancer - CANSA

http://www.plwc.org.za/

ABC - Advocates for Breast Cancer - Breast Health Foundation

ABC - Advocates for Breast Cancer - Breast Course 4 Nurses

ABC - Advocates for Breast Cancer - Pink Drive

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Specialist Breast Cancer Hospitals in South Africa

 This post is a follow-on of ‘Does Diagnosis = Debt?

 Below is a list of all the hospitals in South Africa where breast cancer is diagnosed and/treated.

specialist breast cancer hospitals in south africa 1

specialist breast cancer hospitals in south africa 2

We want safe, quality care

If you have been following this blog you will know that we have been calling for safe, high quality care for all people with breast cancer in South Africa.

Helen Joseph Breast Cancer Clinic and Dr Carol Benn

But what exactly do we mean by that?

 

Safe, quality care needs to be the norm everywhere that people with breast cancer are treated. The care that a patient receives should not be determined by where they live or how much money they have. We know that our public facilities have problems.

We’ve all seen the stories in our news media highlighting the poor state that many of our hospitals are in. We also know that the problems are not insurmountable and that there are many dedicated people working to make sure that the standards are raised. There have been calls for politicians to start using public, rather than private hospitals so that they can share the experiences of the majority of our people, and we commend our Health Minister, Dr Aaron Motsoaledi for doing just that.

So, what needs to happen if we are to have safe, high quality care?

All the different clinicians who are part of the team that cares for people with breast cancer must have the technical skills they need , with regular training, to do their jobs properly.

The health care staff must have regular reviews of their performance and they must be actively involved in continuing professional education.

The equipment needed for diagnosis and care must be available, and in full working order. People with breast cancer must be empowered to make informed choices about their treatment. For this to happen, they need to have information they can understand.

The drugs needed for breast cancer treatment must be available when they are needed. There must be no delays or pauses in treatment.

How have you experienced the quality and equality of your breast cancer care?

 

*Photographs kind courtesy of: Mail & Guardian, IOL, Times Live, Health24 & Shout Africa

 

Cancer is Not a Priority in South Africa!

Breast cancer is a growing problem, aggravated by the fact that it is not regarded as national priority. The severity of the situation is further impacted by the fact that cancer is is not simply one disease like HIV/AIDS, TB or Malaria which all have one simple, uncomplicated, affordable treatment. Compare this to cancer which consists of 300+ diseases – and each one is amplified by endlessly complex environmental causes, genetic causes, complex ways of risk reduction, diagnosis and treatment.

Globally, cancer is a growing problem. But in Africa – and more specifically in South Africa – we are fast heading towards a cancer crisis.

[ Painting by Joaquin Jara ~ via http://www.humanosphere.org/global-health/2011/09/more-women-in-poor-countries-dying-from-breast-cancer/ ]
Painting by Joaquin Jara ~ via http://www.humanosphere.org/global-health/2011/09/more-women-in-poor-countries-dying-from-breast-cancer/

‘It is bad to have cancer and worse to have cancer if you are poor. The gap between rich and poor, highly educated and little-educated and the NorthSouth divide is substantial and continuing to grow. Radical solutions are urgently needed: the status quo is not an appropriate response to the current situation….’ [ *From the State of Oncology 2013, International Prevention Research Institute, Boyle et al. ]

 

Did You Know?

 

  • The Extent of financial catastrophe and impoverishment due to direct out‐of‐pocket payments for health impacts at least 10% of population.
  • Developing countries account for:

– 84% of global population

– 90% of global disease burden

– 20% of global GDP

– 12% of global health expenditure

  • The Bamako Declaration agreed that African governments should spend 2% of health budgets on research. Health research should be seen as INTEGRAL to development and not merely a ‘luxury’.
  • Cancer kills more people than HIV/AIDS, TB and Malaria combined.
  • HIV/AIDS increases the risk of cancer.
  • Breast cancer accounts for the highest cancer incidence in Africa.
  • Lack of access to treatment or inadequate treatment results in high case to fatality ratio for cancers.
  • Lack of training of health care professionals in cancer control and care contributes to ineffective management of the disease.

 

How do YOU think South Africa is faring with this? Tell us what you think on our Facebook page!

 

 

 

Uniquity: No Two Women, Cancer or Journey is the Same

amazing-sunset

What tends to happen is, as noted in our Journey to Joy post, each woman will move through her cycle of emotions  in a way that is completely unique to her – based on her particular life circumstances, the degree of support she has, her personality/emotional style, the type of cancer she has, the type of treatment she needs.

Sometimes we get stuck in one emotion for interminable months – even years. Sometimes we pass through the different emotions quickly and with a degree of relieved ease. Sometimes, we shift into reverse, backing into a stage again if we find we’re not ready for the new emotions, feeling and responses we find ourselves experiencing.

And all of this is normal. It is ok. There is no right way, or wrong way. What must be emphasised is: we must be gentle with ourselves as we try and observe ourselves, almost standing away at an objective distance, as we move within this set of stages, which again – could helpfully be viewed as a journey. So too we must be gentle with those around us who adore and cherish us – who are faced with their own journey and how they’re going to move through their own ones.

What we’re seeing in South Africa is that the vast majority of people being treated for breast cancer do not have access to psycho-social support, nevermind knowing they have a constitutional right to receive support as South African citizens. An effective, equitable breast health policy will ensure that these rights are actively recognised.

We leave you with this:

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”

— Elisabeth Kubler-Ross

 

31 Mythology-Busting Truths About Breast Cancer

One of the most frustrating fear-fuelling issues surrounding breast cancer is that of the mythology that has grown around the bare, hard facts of what breast cancer really is. This is why ABC is tackling the issue of empowering people to ask their doctors about anything and everything they need answers to.

Patients need to know – and have the right to – as many breast cancer facts and as much information they need, in order to feel empowered to make decisions about how they will understand and live with their cancer. The general trend seems to be that patients don’t ask their questions – either because they don’t know they can and should, or because there is a language and/cultural barrier where the patient feels inadequate or afraid to raise their voice in questions and concerns. The questions that beg asking are:

  • Do our government patients know they can and should be asking doctors the questions that they need definitive, understandable answers to?
  • Are our government staff trained to work with patients where there is a language or cultural barrier?
  • Do they have time to be as empathic as they should – or is understaffing a problem that needs solving?
  • Do the patients know what questions to ask, or how to ask them during an appointment? How can we empower people to be assertive with their health care providers? Patient education and empowerment regarding communications is crucial; it is not only the doctors who need teaching!
Unpoppable Truths!
Unpoppable Truths!

No single patient has the same needs as another: both in terms of their cancer-type (no two cancers are exactly alike), as well as their lifestyle and psychological needs. This is why each individual needs to get highly specific-to-them and trusted information so they can effectively deal with the clinical, medical, physical, emotional and social aspects of their breast cancer.

A BIG RED CAUTION: random internet trawling is definitely not the place to find the information and answers you need. The internet is useful in becoming part of an online support group where you can share your feelings and ideas with other patients and survivors. If you’re tempted to visit Dr Google, do so with caution!

The American-based breast cancer advocacy organisation, the National Breast Cancer Coalition’s Breast Cancer Deadline 2020, created an infographic about 31 Breast Cancer Truths  (Click here.) These are truths the whole world needs to know: survivors, their family and friends — and those who are still strangers to BC.

The ABC’s of Breast Cancer

Before we officially launch into full-steam-ahead advocacy, we’re excited to tell you about how we’ll be structuring the ideas, facts and stories surrounding ABC’s specific advocacy campaign and goal: the creation and implementation of an equitable and effective breast health policy for South Africa.

We will be using the 7 Days of the Week themes from this blog, upon which we will build a 31 Days in a Month set of issues, and then present 52 Weeks of the Year as stories as told by BC patients and survivors themselves.

And, just like our introductory ‘alphabet’ post outlining who ABC is, here are the ABC’s of the Breast Cancer Survivor:

The ABC's of Breast Cancer
The ABC’s of Breast Cancer