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"We have to concern ourselves with the quality of life as well as its length." Dr Cicely Saunders, who established St Christopher’s Hospice in London.
When Pieter found out he had Hepatocellular Carcinoma (HCC), he was looking forward to his golden years. He was planning to relax in the company of his family, his four daughters and two sons, in his home in Kraaifontein in Cape Town. He was shocked when he was told that, not only did he have HCC, but it had already metastasised to his lungs and left kidney.
But Pieter got lucky. HCC normally leads swiftly to a fatal outcome: the prognosis after diagnosis is three to six months. Five years after diagnosis at Stage 4, only 10% of patients are still alive.
“HCC is especially prevalent in regions of Asia and sub-Saharan Africa, where the annual incidence reaches 500 per 100 000 population, compared with less than 3 per 100 000 in Western countries. The high incidence of HCC in Asia and sub-Saharan Africa is mainly attributed to the frequency of chronic hepatitis B virus (HBV) infection.” (Bhaijee et al, SA Journal of Surgery, Vol 49, No. 2, April 2011)
Expensive treatment
Until recently, all medical science could offer HCC patients was supportive and palliative care. Recent advances in drug therapy offered some hope. A new oral anti-cancer therapy is currently approved in more than 90 countries for liver cancer and for advanced kidney cancer.
In South Africa, this treatment is approved for hepatocellular carcinoma and for advanced renal cell carcinoma (RCC). But it’s an expensive medicine: how could a patient like Pieter, being treated in the public sector, hope to have access to it?
An innovative partnership between the state and the manufacturer solved that problem and gave Pieter an extension of life.
Public hospitals that participate in this programme include Charlotte Maxeke Johannesburg Academic Hospital, Steve Biko Academic Hospital in Tshwane, Groote Schuur and Tygerberg Hospital in Cape Town, Inkosi Albert Luthuli Central Hospital in Durban, Grey Hospital in Pietermaritzburg, Polokwane Hospital, Kimberley Hospital, Frere Hospital in East London Port Elizabeth Provincial Hospital in PE, and National Hospital in Bloemfontein.
Pieter started treatment on 10 June 2011. His disease rapidly stabilised, and showed some progression only more than a year later, in November 2012. A year later, he’s no longer receiving the cutting-edge medicine , but is managing well on supportive care. Far from the very tired man he was when he first presented with the disease, he is “doing very well”, says his doctor, and feels fine in himself.
Comfort and coping
Three years earlier, Loveday faced the same diagnosis: metastasised HCC. But for him, there was no hope of a brand-new treatment – the partnership that put it within financial reach was still in the future, and the medicine itself had not yet been approved.
So he had to make choices about the end of life. With symptoms such as a swollen belly, severe fatigue and pain, he was battling to cope and dreading the weeks and months that lay ahead. The anxiety had spread throughout his immediate family, who were distressed that the pain seemed uncontrollable – his children found it especially hard to cope.
Fortunately, a friend suggested to his wife that the family approach a local hospice for support. “They help you with something called palliative care,” said the friend, whose family had used hospice for a sick aunt a few years before.
Relief of suffering
Esme Pudule, at Hospice Palliative Care Association (HPCA), explains that palliative care is an approach that improves the quality of life of patients and their families, through prevention and relief of suffering. This involves the early identification and “impeccable assessment and treatment of pain and other problems; physical, psychosocial and spiritual”. Palliative care should be implemented in conjunction with other therapies aimed at prolonging life.
Loveday was on pain medication, but it was not being properly managed and the result was an anxious, fearful patient in unacceptable pain.
Patients in need of proper palliative care should get it: the medicines in use are not new and unfamiliar to healthcare practitioners, and the cost is not a factor, says Dr David Cameron, who has worked with terminally ill patients for many years.
“It is not about needing new medicines. Opium has been around for centuries. Morphine is just as effective now is as it was then. Is it cost? No, we can relieve the pain of most advanced cancer patients for less than it costs to buy half a loaf of bread per day. The cost of 100mg of morphine solution is R4.50. Divided up and given four-hourly by mouth that would make most cancer patients comfortable. It's enough to treat about 80% of patients with advanced cancer.”
The right to be comfortable and pain-free
The barriers, he says, are in our minds. As long as we don’t know and understand, both as doctors and patients, that it is our right to be comfortable and pain-free, at any stage of a serious disease, then we will not have access to the medication we need to make and keep us that way.
“As long as palliative care courses are viewed as peripheral to mainstream medical training, even excellent doctors will remain ignorant of the skills and methods of managing the whole patient, not only their disease,” wrote Professor Selma Browde last year.
She went on to say, “For too long, doctors and nurses have been confused by an assumed conflict between their duty to care for the patient, in the patient's best interest, and misconceptions about their moral and legal right to relieve agonising pain and other distressing symptoms. This often results in a reluctance to administer the necessary medication to a dying patient, who may then suffer a tortured death without release from terror-filled pain or, even worse, the inability to breathe.”
A 'good death'
The trained hospice staff counselled Loveday and his family, calming them and reassuring them that a good cancer journey was possible.
A little adjustment made his pain medication effective so he was able to enjoy his family and prepare for the end. When it came, he died peacefully in the arms of his wife and with his children in the room.
Thanks to access to professional counselling and assistance, thanks to access to the right medications and someone who knew how to use them to best effect, Loveday was able to have an experience we should all hope for: a ‘good death’.
As Dr Saunders said, “You matter because you are you, and you matter to the last moment of your life.”
Enough cancer medication – and the right ones
That’s why access to cancer medication and the skill to use them, whether it’s the simplest analgesic given at the right time or the most complex and sophisticated chemotherapy cocktail, is so crucial.
One of the main objectives of South Africa’s National Drug Policy (NDP), adopted in 1996 is to ensure availability and accessibility of essential medicines to all citizens. But how do we achieve this? And what is an ‘essential’ medicine – would a medicine like the one Pieter benefited from qualify?
South Africa’s Essential Drugs List (EDL), also known as an Essential Medicines List (EML) is based on the World Health Organisation’s EDL. Over and above that, the Department of Health allows for tenders – wiggle room that is not always used by the provincial departments of health.
Essential medicines
The World Health Organisation (WHO) describes essential medicines as those that satisfy the priority healthcare needs of the population. Essential medicines are intended to be available within health systems at all times in adequate quantities, in the appropriate dosage forms, with assured quality and adequate information, and at a price the individual and the community can afford.
The concept of essential medicines incorporates the need to regularly update medicines selections to:
- reflect new therapeutic options and changing therapeutic needs
- ensure medicine quality
- ensure continued development of better medicines, medicines for emerging diseases, and medicines to meet changing resistance patterns.
Effective health care requires a balance between preventive and curative services. A crucial and often deficient element in curative services is an adequate supply of appropriate medicines.
Restriction and lack of consistency
Far from “reflecting new therapeutic options”, the EDL is “very restricted when it comes to oncology medications in particular,” says Dr Catherine Davies, director of Campaigning for Cancer.
“The challenge is especially acute in relation to high-cost items such as the new biologics and oncology medicines,” wrote Bhada Pharasi and Jacqui Miot last year.
“Currently, selection decisions about high-cost medicines and technologies are not consistent and more often than not appear to be based on the persuasive powers of the specialists that request the product.
“Clinical evaluation is carried out, but formal investigation into the cost effectiveness of the product rarely occurs. In addition, no follow-up process exists that measures the outcomes (both clinical and cost) of selecting such products. Indeed, in most instances of medicine selection, measurement of costs and outcomes is lacking.”
Stumbling blocks for cancer patients
Lack of range on the EDL and lack of consistency are the two main stumbling blocks for cancer patients who rely on public health care.
“The list is much more restricted than the private sector,” says Dr Davies. “And cancer medicine availability is inconsistent across the provinces.” For example, KwaZulu-Natal has a broader range of oncology drugs than the Western Cape, so a state patient who moves from KZN to the Western Cape could lose access to the drugs that are treating their cancer.
If we want to see more good-news stories like Pieter’s coming out of our public health system, we need to ensure that an adequate range of oncology treatments is on the EDL and that the list is constant across the whole country.
(Sources: Good palliative care removes need for euthanasia; Essential Drugs Programme (EDP); Medicines Selection and Procurement in South Africa, SAHR 2012/13)
Join the conversation on Twitter: follow @campaign4cancer or use the hashtag: #cancer_journey
You can also join the Campaigning for Cancer Facebook page.
Denied cancer treatment? Phone the Ask Now Call Centre on 0861 275 669 (0861 ASK NOW) for help.
When Pieter found out he had Hepatocellular Carcinoma (HCC), he was looking forward to his golden years. He was planning to relax in the company of his family, his four daughters and two sons, in his home in Kraaifontein in Cape Town. He was shocked when he was told that, not only did he have HCC, but it had already metastasised to his lungs and left kidney.
But Pieter got lucky. HCC normally leads swiftly to a fatal outcome: the prognosis after diagnosis is three to six months. Five years after diagnosis at Stage 4, only 10% of patients are still alive.
“HCC is especially prevalent in regions of Asia and sub-Saharan Africa, where the annual incidence reaches 500 per 100 000 population, compared with less than 3 per 100 000 in Western countries. The high incidence of HCC in Asia and sub-Saharan Africa is mainly attributed to the frequency of chronic hepatitis B virus (HBV) infection.” (Bhaijee et al, SA Journal of Surgery, Vol 49, No. 2, April 2011)
Expensive treatment
Until recently, all medical science could offer HCC patients was supportive and palliative care. Recent advances in drug therapy offered some hope. A new oral anti-cancer therapy is currently approved in more than 90 countries for liver cancer and for advanced kidney cancer.
In South Africa, this treatment is approved for hepatocellular carcinoma and for advanced renal cell carcinoma (RCC). But it’s an expensive medicine: how could a patient like Pieter, being treated in the public sector, hope to have access to it?
An innovative partnership between the state and the manufacturer solved that problem and gave Pieter an extension of life.
Public hospitals that participate in this programme include Charlotte Maxeke Johannesburg Academic Hospital, Steve Biko Academic Hospital in Tshwane, Groote Schuur and Tygerberg Hospital in Cape Town, Inkosi Albert Luthuli Central Hospital in Durban, Grey Hospital in Pietermaritzburg, Polokwane Hospital, Kimberley Hospital, Frere Hospital in East London Port Elizabeth Provincial Hospital in PE, and National Hospital in Bloemfontein.
Pieter started treatment on 10 June 2011. His disease rapidly stabilised, and showed some progression only more than a year later, in November 2012. A year later, he’s no longer receiving the cutting-edge medicine , but is managing well on supportive care. Far from the very tired man he was when he first presented with the disease, he is “doing very well”, says his doctor, and feels fine in himself.
Comfort and coping
Three years earlier, Loveday faced the same diagnosis: metastasised HCC. But for him, there was no hope of a brand-new treatment – the partnership that put it within financial reach was still in the future, and the medicine itself had not yet been approved.
So he had to make choices about the end of life. With symptoms such as a swollen belly, severe fatigue and pain, he was battling to cope and dreading the weeks and months that lay ahead. The anxiety had spread throughout his immediate family, who were distressed that the pain seemed uncontrollable – his children found it especially hard to cope.
Fortunately, a friend suggested to his wife that the family approach a local hospice for support. “They help you with something called palliative care,” said the friend, whose family had used hospice for a sick aunt a few years before.
Relief of suffering
Esme Pudule, at Hospice Palliative Care Association (HPCA), explains that palliative care is an approach that improves the quality of life of patients and their families, through prevention and relief of suffering. This involves the early identification and “impeccable assessment and treatment of pain and other problems; physical, psychosocial and spiritual”. Palliative care should be implemented in conjunction with other therapies aimed at prolonging life.
Loveday was on pain medication, but it was not being properly managed and the result was an anxious, fearful patient in unacceptable pain.
Patients in need of proper palliative care should get it: the medicines in use are not new and unfamiliar to healthcare practitioners, and the cost is not a factor, says Dr David Cameron, who has worked with terminally ill patients for many years.
“It is not about needing new medicines. Opium has been around for centuries. Morphine is just as effective now is as it was then. Is it cost? No, we can relieve the pain of most advanced cancer patients for less than it costs to buy half a loaf of bread per day. The cost of 100mg of morphine solution is R4.50. Divided up and given four-hourly by mouth that would make most cancer patients comfortable. It's enough to treat about 80% of patients with advanced cancer.”
The right to be comfortable and pain-free
The barriers, he says, are in our minds. As long as we don’t know and understand, both as doctors and patients, that it is our right to be comfortable and pain-free, at any stage of a serious disease, then we will not have access to the medication we need to make and keep us that way.
“As long as palliative care courses are viewed as peripheral to mainstream medical training, even excellent doctors will remain ignorant of the skills and methods of managing the whole patient, not only their disease,” wrote Professor Selma Browde last year.
She went on to say, “For too long, doctors and nurses have been confused by an assumed conflict between their duty to care for the patient, in the patient's best interest, and misconceptions about their moral and legal right to relieve agonising pain and other distressing symptoms. This often results in a reluctance to administer the necessary medication to a dying patient, who may then suffer a tortured death without release from terror-filled pain or, even worse, the inability to breathe.”
A 'good death'
The trained hospice staff counselled Loveday and his family, calming them and reassuring them that a good cancer journey was possible.
A little adjustment made his pain medication effective so he was able to enjoy his family and prepare for the end. When it came, he died peacefully in the arms of his wife and with his children in the room.
Thanks to access to professional counselling and assistance, thanks to access to the right medications and someone who knew how to use them to best effect, Loveday was able to have an experience we should all hope for: a ‘good death’.
As Dr Saunders said, “You matter because you are you, and you matter to the last moment of your life.”
Enough cancer medication – and the right ones
That’s why access to cancer medication and the skill to use them, whether it’s the simplest analgesic given at the right time or the most complex and sophisticated chemotherapy cocktail, is so crucial.
One of the main objectives of South Africa’s National Drug Policy (NDP), adopted in 1996 is to ensure availability and accessibility of essential medicines to all citizens. But how do we achieve this? And what is an ‘essential’ medicine – would a medicine like the one Pieter benefited from qualify?
South Africa’s Essential Drugs List (EDL), also known as an Essential Medicines List (EML) is based on the World Health Organisation’s EDL. Over and above that, the Department of Health allows for tenders – wiggle room that is not always used by the provincial departments of health.
Essential medicines
The World Health Organisation (WHO) describes essential medicines as those that satisfy the priority healthcare needs of the population. Essential medicines are intended to be available within health systems at all times in adequate quantities, in the appropriate dosage forms, with assured quality and adequate information, and at a price the individual and the community can afford.
The concept of essential medicines incorporates the need to regularly update medicines selections to:
- reflect new therapeutic options and changing therapeutic needs
- ensure medicine quality
- ensure continued development of better medicines, medicines for emerging diseases, and medicines to meet changing resistance patterns.
Effective health care requires a balance between preventive and curative services. A crucial and often deficient element in curative services is an adequate supply of appropriate medicines.
Restriction and lack of consistency
Far from “reflecting new therapeutic options”, the EDL is “very restricted when it comes to oncology medications in particular,” says Dr Catherine Davies, director of Campaigning for Cancer.
“The challenge is especially acute in relation to high-cost items such as the new biologics and oncology medicines,” wrote Bhada Pharasi and Jacqui Miot last year.
“Currently, selection decisions about high-cost medicines and technologies are not consistent and more often than not appear to be based on the persuasive powers of the specialists that request the product.
“Clinical evaluation is carried out, but formal investigation into the cost effectiveness of the product rarely occurs. In addition, no follow-up process exists that measures the outcomes (both clinical and cost) of selecting such products. Indeed, in most instances of medicine selection, measurement of costs and outcomes is lacking.”
Stumbling blocks for cancer patients
Lack of range on the EDL and lack of consistency are the two main stumbling blocks for cancer patients who rely on public health care.
“The list is much more restricted than the private sector,” says Dr Davies. “And cancer medicine availability is inconsistent across the provinces.” For example, KwaZulu-Natal has a broader range of oncology drugs than the Western Cape, so a state patient who moves from KZN to the Western Cape could lose access to the drugs that are treating their cancer.
If we want to see more good-news stories like Pieter’s coming out of our public health system, we need to ensure that an adequate range of oncology treatments is on the EDL and that the list is constant across the whole country.
(Sources: Good palliative care removes need for euthanasia; Essential Drugs Programme (EDP); Medicines Selection and Procurement in South Africa, SAHR 2012/13)
Join the conversation on Twitter: follow @campaign4cancer or use the hashtag: #cancer_journey
You can also join the Campaigning for Cancer Facebook page.
Denied cancer treatment? Phone the Ask Now Call Centre on 0861 275 669 (0861 ASK NOW) for help.
