If you are a member of a medical scheme, “managed care” is a term you most certainly have come across – but what does it mean?
Managed care is by no means unique to South Africa, in fact, it is wide spread internationally. According to the Council for Medical Schemes, managed health care is defined as the “the clinical and financial risk assessment and management of healthcare, with a view to facilitating appropriateness and cost effectiveness of relevant health services within constraints of what is affordable through the use of rule based and clinical management based programmes”.
This all sounds very confusing, but when you read words such as formulary, protocols, rules and networks in relation to your medical scheme cover, these words all form the tools by which your scheme implements managed care – a system of managing private healthcare coverage, adopted in South Africa in 1995.
As a cancer patient advocacy organisation, we constantly have to find the middle ground between the relevant facts and the emotional position taken to healthcare by patients. As South Africa grapples with providing healthcare services to a population whose average life expectancy is increasing, where long term chronic diseases are steadily on the rise and innovations in medical technology and the provision of health services continue to evolve with ever increasing cost implications, new complexities in the delivery of – and access to – healthcare arise each day. These factors set a complex background to a system of defined and, currently, inflexible formulas to limit risk and ensure sustainability of medical scheme funds.
For young South African’s, purchasing private medical cover is often seen as a grudge purchase. We are healthy, so why spend a lot of money on something we may not ever use? However, when we are faced with a disease such as cancer, the coverage we have purchased becomes significantly relevant and the tools of managed healthcare are the factors that ultimately become factors in us accessing the treatment we may need.
There is however, one glaringly obvious fact that Campaigning for Cancer, on behalf of all patients, need to point out and that is the existence of our Constitution and the Bill of Rights, which affords to every South African the right to access healthcare.
It is because of the very existence of these rights, that the terms such as “appropriateness”, “risk”, “efficacy” and “necessity” which are bandied about in relation to managed care, become worrisome and cause for our attention as patient advocates. It’s also the first emotional reaction of a patient-consumer to managed care.
Each year Campaigning for Cancer helps patients understand and navigate the managed healthcare sector, in relation to the right to access treatment and the escalation of decisions to deny treatment plans. Most recently, we have dealt with cases that highlight where managed care has had both catastrophic health related and financial implications for the patient.
Debbie*, a young mother of three, was diagnosed with an exceptionally rare form of cancer. Worldwide only 300 to 500 people are diagnosed with Debbie’s type of cancer per year. Debbie’s doctor knows this is an exceptional case and seeks the help in formulating a treatment plan from an international centre that has had experience with treating this particular type of cancer.
The centre provides her oncologist with a treatment plan but certain components of the plan are not included in her scheme’s managed health care protocols. However, the treatment regimen – which is novel – has shown amazing evidence based results for the centre. The irony of this case is that, according to the General Regulations to the Medical Schemes Act, 1998, Debbie’s disease is a PMB. Four years later Debbie, who had she not received the prescribed medication, would be dead according to her doctor’s previous experience of the regimens approved by managed care protocols, is still alive. Debbie’s young children are now four years older and she has had an opportunity to raise them. However, the family faces catastrophic financial implications because a managed care decision will force them to cover the costs of all of her treatment. A treatment that costs significantly less would have been prescribed had Debbie been diagnosed with a HER2 positive breast cancer. Debbie and her family find themselves in a situation where the inability of managed health care to adapt and accept the evidence based medicine of an international expert.
“Appropriate” in the above scenario would have been for those in the managed care setting to weigh the particular facts of the case with the capacity of the already allocated cancer benefit Debbie purchased to deal with her condition and treatment. “Appropriate” is not the rigid application of a set of protocols. In this scenario, the inflexibility of managed care discriminated unfairly against a patient diagnosed with a rare cancer.
Yet, if we are to explore managed care in relation to the factual and emotional high ground, no situation brings the topic more into focus than the coverage of terminal, or end-of-life care in the case of cancer.
The Constitution of the Republic of South Africa, 1996, the International Human rights charter, the South African Patients’ Right Charter, the Medical Schemes Act and the WHO Guidelines on pain relief and end-of-life care should be the starting and ending point for any managed care programme and are the undeniable “facts” we as advocates will base any request for accessing treatment for the patients we represent.
Add to this the responsibility of patient advocates and advocacy organisations also bring to light the “facts” of the emotional burden managed care can place on a patient and their loved ones. This is epitomised in the story of the Nkosi family*. Mrs. Nkosi* fought a long and difficult battle against breast cancer and eventually her doctor had to break the bad news to the family that her cancer was now terminal. The best they could do was ensuring that she wasn’t in pain and was comfortable in her last few weeks of her life. Mr. Nkosi had taken as much leave from work as he was able to, although he needed to return to work on a part time basis. He was also responsible for the care of their two children, both under the age of ten.
As his wife’s disease progressed it became apparent that she would need continued care. They requested that their medical scheme cover the costs of a nurse to care for Mrs. Nkosi at home for a few hours a day. The scheme denied this request stating that, in terms of managed care protocols, the situation constituted frail care and was not covered by the scheme. However, the scheme would agree to admit Mrs. Nkosi into hospital. The daily costs of a home nurse are significantly less than the costs of admitting a patient to hospital. Add to this the fact that Mrs Nkosi’s children would have limited visitation with their mother due to hospital visitor polices. The Nkosi’s faced a difficult decision: she could stay at home and not receive the adequate pain control and medical care, or she could be admitted to hospital but be denied the opportunity to spend her last days in the comfort of her home surrounded by her family. In the case of the Nkosi family, are we really able to say that managed care protocols provided the appropriate “necessity” of cover?
Save people, not money
Fundamentally, the principle of managed care is to provide health services within constraints of the resource settings in which we find ourselves. This is accepted, but managed care programmes must continually explore not only the facts in relation to the way in which services are provided, but also the emotional and practical impact of these managed care formulas, protocols and decisions have on patient-consumers and their families. It appears, from the patient-consumer’s point of view, that the emphasis of managed care is incorrectly placed on saving money and not people. We, as patient advocates, will continue to lobby with healthcare service providers to place emphasis on the practical implications that managed care has on the patient-consumer. As it is the patient-consumer – you and your family – that are directly affected by these tools that were created to ultimately protect us.
*Patient’s name changed to protect confidentiality.
Written by Lauren Pretorius