A patient advocate's view : myopic Corporate Social Investment (CSI)
Let me declare my biases upfront: I am a breast cancer patient with congestive heart failure. The latter is my primary disease that developed as a consequence of treatment for the former. My breast cancer patient advocacy is born from this paradox.
I have been circulating a breast cancer nurse training proposal to various Corporate Social Investment (CSI) programs interested in public healthcare - with women's health as their main focus. The "rejection" responses have been astounding to say the least. It is utterly baffling how rigid the "CSI focus" areas are. Women's bodies are somehow viewed in "neat" silos by suits and their well-meaning CSI portfolio management agencies.
Rigidity used to be my forte until I travelled outside my preppy Sandton digs to where the women I have signed up to assist live. Uni-focal social issue "solutions" - particularly in the area of health, do not work and are, in my experience, a waste of much needed financial resources.
A woman I have learned is not her breasts nor is she her cervix. She is not symbolised by a pretty pink ribbon. The women BreastSens works with are dynamic and defy categorization. Their live aresituations very complex and worthy of respect to understand before rushing in with corporate pre-packaged solutions honed on commercial products.
Women's health in South African indigent communities is a matrix of: the health condition(s) complained of, socio-economic factors, cultural issues, formal education level (foreign language skills), access to quality healthcare facilities, domestic relationships and structural barriers to treatment due to a crumbling national public health system.
Breast cancer is my primary focus of advocacy but I can no longer naively exclude "other" diseases because they fall outside BreastSens' "area of focus". This is because I have increasingly met women who have both breast cancer and are HIV positive. These are mostly unemployed young mothers trapped in dysfuntional relationships, sometimes physically abusive. These are women living in shanties with meagre financial resources who consciously have to choose between housing and feeding their offspring versus attending chemotherapy or raditiation treatment at a place far from their homes.
So yes dear Community Social Investment official we need your money, project management, corporate governance, sustainability and scalable skills' assistance. But, listen up the women's needs are all inter-linked. Your "investment" would yield more returns if your approach was diagonal. We all know that HIV/Aids is a health challenge in this country - especially among women under 35.
This is a woman we shall call Lindiwe's real life story: She is 28, mother of 3 kids under 6 years living in a backyard shanty in Diepkloof, Soweto. She was diagnosed HIV positive 5 years ago. She has remained symptom free because of her healthy lifestyle. Lindiwe attended the breast clinic at Chris Hani Bara and was diagnosed with breast cancer on the 14th December 2011. Doctors indicated her for a unilateral mastectomy but ended up with a bilateral because her other breast was affected.
She was in hospital for twenty days for what should have been a five day stay. An electricity power failure at the hospital delayed her procedure by seven days. Delayed in-hospital consultations with specialists also played a part.
Lindiwe was referred, patient file in hand, to the in-hospital HIV/Aids clinic to start her ARV treatment which has to be administered in tandem with her cancer treatment. The attendant at the facility turned her back because the breast doctors should manage her. Plus they did not understand why she needed ARV with a CD4 count higher that the nationally prescribed 350 for HIV/Aids treatment commencement. Prime example of each disease silo to its own. A diagonal health systems approach would have adopted a more comprehensive women's health service offering, realizing and acknowledging the high probability of HIV/Aids and other diseases co-morbidities.
Structural limitations led to unnecessary hospitalization health Rand spend. The lack of an intergrated public health sector women's health program left her floating between medical specialist team having to self-navigate through a lanbrith at a time of great personal stress. She fortunately had BreastSens' for daily check-in but as a small Non-Profit, we were not able to assist when her land-lady threatened to kick her seven year old son and his aunty out of their shanty home. Lindiwe was lying helpless in hospital crying about the unceasing blows she was being dealt.
Well, maybe we should circulate her case to four CSI porfolio managers, whose funds deal with HIV/Aids, Housing, Breast Cancer, Counselling respectively. Did we mention that she is scared to reveal her HIV status to her partner because he might beat her up, remove the children from her and end the relationship? That means approaching a fifth CSI manager for funding as well.
We should also engage the various Non-profits who deal with each of her probems. We are a breast cancer single focus organization. Everybody wants to help her for specific issues - lest they lose focus. Does any of us care about the strain of running around fighting individual health and social problems on her? Do we really care about engaging in and developing effective and situation relevant women's health solutions that are sustainable and scalable or are we adamant to remain in our Sandton silos?