Thursday, May 31, 2007
Choices In Healing: Integrating The Best of Conventional and Complementary Approaches to Cancer by the organisation's founder Michael Lerner and available for free on Commonweal's website seems to be a very sensible guide to and survey of complementary approaches. It summarises any scientific evidence for an approach, is not afraid to admit it when there is no scientific evidence.
"I have seen no systematic cure for any form of cancer among the therapies currently described as "unconventional." This is an important finding. Conventional therapies, for all their real shortcomings, are capable of curing a number of cancers reliably. When I say I have seen no systematic cure for cancer among the unconventional therapies, this does not mean that I have seen no individual cures among people who have used unconventional therapies. In fact, there are well-documented examples of people who have recovered from "terminal" cancers using various unconventional cancer therapies. But these examples of individual recoveries from terminal cancers are not frequent enough to form a pattern that would allow me to say that there is a cure for any cancer among the unconventional therapies."
However, the role of complementary approaches in pain relief, psychological well-being, potential enhancement of conventional treatment, prevention. palliative care etc are discussed and in many cases there is solid evidence that they can be beneficial.
It also provides very sensible advice concerning the patient and physician's attitudes and approaches to conventional treatment.
Perhaps one glaring omission is the lack of a section on paediatric and young adult care. The use of music, art, drama, laughter, "bravery" stickers and certificates etc as therapy - a highpoint for Kezia of her stays at hospital have been the visits of the hospital clown!
Wednesday, May 30, 2007
I’m learning a lot.
Percentage rate of various cancer treatments (in the U.K.) goes along the following lines according to therapy:
Hence AfrOx/IAEA emphasising radiotherapy over chemotherapy for developing world treatment. There is no mention in the AfrOx or PACT literature on surgical or chemotherapy control and training.
I also note that the IAEA is concentrating on the provision of Cobalt-60 machines. The numbers of the two types of machine in the U.K. are as follows:
Linear Accelarators: 199
The report explicitly states “old cobalt machines”. So I wonder why the IAEA/PACT programme is concentrating on Cobalt-60 machines. Expense of LAs versus C-60s? Expense of maintaining LAs vs C-60s, simplicity of use or maintenance etc etc. I don’t know. But I hope the developing world is not being fobbed off …
So I’ll come on now to the NHS – there is no shortage of radiotherapy machines! Thank your deity etc …
Well, there is …
Radiotherapy capacity seems to be measured in MegaVolts per million population. I love that … visions of Frankenstein movies!
And when Italy (4.31 mV) beats England in the league tables, you have to be concerned!
The WHO recommends 5 machines per million. From 1997 to 2002 waiting times have became longer and the number of out-of-date machines has increased.
As in the rest of the NHS, there is a shortage of trained staff:
- a total of 431 of consultant oncologists with a shortage of 14%, and with an additional 262 clinical oncologists needed by 2010 taking into account attrition and increase in cancer occurrence. (Hi MTAS!)
- 17% shortage in therapy radiographers – “many departments are not able to use their full [equipment] capacity because of the lack of therapy radiographers”.
- 6.6% lack of physicists [essential for equipment maintenance] in some areas as high as 25%.
Need I say more …
Tuesday, May 29, 2007
Monday, May 28, 2007
I miss the family something rotten. I look at their photos everyday. Now I have Skype at work I speak with them most days. Jaime is at school. The last few days Kezia doesn`t want to speak to me – that hurts. But then what does she think of me so far away?
I wrap myself up in work and this blog. I wrap myself up in anything to do with cancer treatments, the UK National Health Service, (recently) cancer in Africa, children and young adults with cancer, open-source medicine etc etc. I never go out apart from basics like shopping and getting the car fixed. Previous interests and hobbies have gone out of the window. And maybe they shouldn´t.
I come home from work to an empty house …
Weekends are horrible …
Kezia´s treatment – someone in a comment on another blog asked if scientific papers, reports etc make a difference to treatment decisions. No, I don’t question the wisdom of her treatment, because I think she is receiving state-of-the-art treatment, and because my own knowledge is limited. But I do want to understand the science behind it. I read all these medical papers, try to understand them and try to put them in plain-speak because I think carers and patients, with less education than I, also have the right to understand. Making any science accessible to the masses has to be an aim of a good scientist.
I think that maybe if Kezia´s treatment became/becomes difficult, if choices have to be made as parents … and certainly H., A.and S. have been put in this situation … then the more informed the better. The decisions that Josie Grove and Davo have taken, have to be and I hope were, based on their understanding.
I skype Nanda every treatment day to check everything is going to plan – they´re going to get back from hospital on time to pick up Jaime from school, they`re going to have to stay and who is going to pick up and care for Jaime?
And I worry about money. Every month, will there be enough? Here, at least, I can get credit at local stores, kiosks etc – but in the UK that must be very rare (small islands in NW Scotland?). Here I can defer bills (fuck, electricity bills are three months late and the PO Box is five months late, the last trip to the UK is only 40% paid, I owe the bank 200 pounds at the end of the month). But I must make sure Nanda has enough to pay bills, rent etc.
I miss the family something rotten.
Here we have an agreement with the ex-colonial power that serious medical cases are evacuated to Europe for treatment – this is clearly expensive and open to abuse and equally, the bureaucratic delays involved in such a system put the patient’s life at risk. Kezia would have been dead if we had had to rely on this system. Once a patient is within the healthcare system of the ex-colonial power, institutional racism often leads to unsatisfactory treatment.
But, even if cancer treatment facilities are to remain unavailable here, diagnostic facilities require vast improvement. The techniques/skills to accurately diagnose Kezia’s leukaemia were unavailable. A programme to promote PAP smear testing (or even vaccination) for cervical cancer (one of the most common forms of cancer in Africa) would be economically viable and effective.
I imagine in the Caribbean, with far more small island states than around Africa, the inter-state healthcare network is far more developed. But still the expense, both to the states involved and the individuals must be crippling. In the Pacific I imagine the far-greater distances involved make the challenge of providing adequate heathcare even greater.
I hope to look into this further.
However, there are other aspects to the agency’s work. As its charter says, “the IAEA carries out programmes to maximize the useful contribution of nuclear technology to society while verifying its peaceful use”.
One little known activity of the IAEA is, therefore, the promotion of radiotherapy techniques, equipment and training for cancer treatment in the “developing” world through its Programme of Action for Cancer Therapy (PACT).
In most developed countries there is a ratio of one radiotherapy machine per 250,000 inhabitants. In developing countries it is more common to find ratios of one machine per several million inhabitants. Fifteen countries in Africa have no radiotherapy facilities at all. In Ethiopia the IAEA has provided one machine which serves a population of c. 60 million (i.e. comparable to the U.K. which has 207 machines, one per 290,000 inhabitants: reference). In its first four years of operation 1300 people were treated with a four year survival rate of 50%. The survival rate is not as good as the developed world, principally because diagnosis is frequently at a stage when the disease is far advanced. The IAEA is working with 22 countries (not ours) in Africa.
The IAEA estimates that $2.5 billion over ten years is needed to provide adequate facilities in the developing world with half that sum being allocated to training (refreshingly given Friday´s post on human resources).
The recent Cancer Control in Africa conference (posts here, here and here) was a joint initiative between AfrOx and the IAEA.
Friday, May 25, 2007
He certainly tried to explain as he best could to the general public the ins-and-outs of white blood counts and regretted that a haematologist had not also been invited on the programme. He described the limited facilities in his country. A country with a population of 14.5 million, a geographical area of 1.25 million square kilometres and only two hospitals in the capital city that can treat cancer.
Meanwhile the BBC here discusses a Medecins Sans Frontieres report (and press release) bemoaning the vast shortages of medical staff in Africa (albeit in the context of HIV/AIDS but it applies to all areas of medical care). It cites, for example, the fact that in 2005 in Malawi only 44 nurses qualified whilst 86 left the country. The shortage of doctors has led the head of MSF in South Africa to suggest that nurses be given the power to write prescriptions (you'd love that Dr Crippen!). The WHO recommends a minimum of 20 doctors per 100, 000 people - Lesotho has five, Malawi has two and Mozambique has 2.6. MSF points to the irony of donors loving to build new health facilities but who are unwilling to invest in the human resources to staff them and thus they stand empty.
Wednesday, May 23, 2007
Next week, Tuesday, will be the end of the first year of treatment, passing from visits to the hospital 2-3 times a week to 2-3 times a month.
Between these two occasions, we would like to thank the many people who have helped us, whether materially, morally, through their work. Sorry it is all initials those mentioned, if they read this, will know who they are. If, as this is written, we have forgotten anyone, many apologies …
First, and in chronological order, our doctors here, Noel, Bemvinda and Irene who told us to “get her out” (or she”ll be dead within 1-2 weeks), my ambassador R, my Consul R. and my Honorary Consul J. for getting us all to the UK in three days, to L at the local travel agency for giving us credit on the tickets.
To Dr. K. and his team at the local general hospital in the U.K., who did the original preliminary diagnosis and arranged our immediate transfer to the RMCH.
Very especially to the RMCH, to our consultant Dr. J. and our Clic Sargent social worker T. To the other doctors, the nursing staff, the lab staff, the porters, cleaners, canteen staff etc etc. Two particular nurses on Borchardt Ward, H. and E., many thanks, you know who you are. And the voluntary ambulance drivers who show us such love.
To our Primary Care Trust healthworker, C.
To the anonymous bureaucrats in the Immigration and Nationality Service who extended Nanda´s leave to stay and allowed Jaime to be with his mum.
To Jean, the Primary Care Trust accountant, who asked no questions.
To our friends that we made in the first four weeks on Borchardt Ward – A. and H. They symbolise the courage that cancer. To their husband and father S. now with terminal cancer.You inspire us.
To Lucia, a friend of H.´s, and a colleague in Borchardt, but who we met coincidently over the Internet. You are also an inspiration.
To Sao, Nanda´s long-lost cousin in the UK.
To B. and R. at the Hotel M., here, for both moral and material support – you have been friends for so long, I lament your leaving now.
To T. here for continuing support and the donation of a laptop.
To Aunty Laura who rings every week and her daughters Jessica and Philippa.
For me here in Africa:
To Myron, who I met only recently, and to your wife dying from cancer now. I think of you lots. Please show her a photo of Kezia – I look at the family photo you left everyday.
To Henry, Charles, Tom, Martinho and all my other work colleagues.
To my neighbours, Kini and others who look out for me and help out whenever they can.
To Hamilton and Kiste who work for us here. You have helped me so much without family around me and to protect me. You have been through thick and thin with me, your trust I value beyond words.
To the people in the blogosphere who inspire me to keep this going: Alex, Kathryn, Andy, Patty, John Crippen, Rob and Lauren, Potentilla etc.
Last and above all others – my brother Pete, my sister-in-law Paula and our friend Margaret … there are no words to express what we feel.
And finally I will say thank you to all those who work in and all those who believe in the NHS for letting our daughter live the past year.
Tuesday, May 22, 2007
Lots of small milestones the last few weeks - the last of this drug, the last of that drug, Next week sees the first Big Milestone - the last dose of this phase (Vincristine) and then we're into the much less intensive maintenance phases! Looking forward to it! Vinvcristine once a month through the maintenance phases.
Monday, May 21, 2007
I post here the “London Declaration on Câncer Control in Africa”. My own comments are in brackets and bold. My first comment though is here … no African cancer patient or carer attended.
I am totally supportive of this project. Our daughter, Kezia, could/would be one of the 95% non-survivors in Africa, if I had not been able to take her to the U.K. to receive treatment under the U.K. National Health Service.
The entire London Declaration is below, my commentary is in square brackets and bold.
Over 130 leaders in all aspects of World Health and Cancer Control gathered in London for a 2 day meeting, chaired by Prof David Kerr [head of Department of Clinical Pharmacology, University of Oxford], the Rt. Hon. Alan Milburn [former UK Secretary of State for Health] and Sir John Arbuthnott [microbiologist and Chairman of Greater Glasgow NHS Board] [why not an African chair member?], to discuss how best to bring comprehensive cancer care to African countries. This meeting built on two previous international conferences, held in 2006, that addressed the issue of the cancer burden in all developing countries (The Cape Town Meeting organized by the International Atomic Energy Agency, IAEA and the World Cancer Congress in Washington DC organized by the International Union against Cancer, UICC). There is a growing awareness of the magnitude of the cancer problem in the developing world and a sense of urgency regarding the need to take immediate action. Prof David Kerr, University of Oxford, has recently set up a new organisation to enable the delivery of comprehensive cancer care to African countries, AfrOx, whose mission is to enable the delivery of comprehensive cancer care to African countries.
Impending African Crisis
African countries will account for over a million new cancer cases a year and they are the least able of all developing countries to cope, having few cancer care services. Lack of resources and basic infrastructure mean that most Africans have no access to cancer screening, early diagnosis, treatment or palliative care. Life-saving radiotherapy is available in only 21 of Africa’s 53 countries [and chemotherapy?], or to less than 20% of the population [much less than 20% I suspect given that such facilities will be concentrated in private medical facilities in large cities], and consequently cancer is a sentence to a painful and distressing death. At the same time over one third of cancer deaths are due to preventable causes such as viral infections, poor nutrition and widespread tobacco use [and the other 66%?]. Cancer in the developing world knows no age limits. It is estimated that 100,000 children die unnecessarily fom cancer in the developing world each year. In Africa, on average 5% of childhood cancers are cured, compared to nearly an 80% cure rate in the developed world [WAH! There goes our daughter Kezia!]. In terms of cancer care, the disparities between the standard of care in developed and developing world countries couldn’t be greater. In addition, in many African countries the combined effects of of cancer, poverty, deprivation and infectious diseases hinder the development of a sustainable population and consequently a sustainable future.
The only way to effectively prevent, detect, and treat the rising number of cancers in the developing world is to develop broad and effective partnerships of research institutions, international organizations, NGOs, national governments in developed and developing countries and the pharmaceutical industry. Strong local and international leadership is essential.
The relevant organisations and individuals, with funds from governments and private donors, must be brought together to develop achievable and sustainable national cancer plans that are evidence based, priority driven and resource appropriate for African countries, and we are committed to doing this.
The purpose of this London Declaration is to raise awareness of the magnitude of the cancer burden in Africa and to call for immediate action to bring comprehensive cancer care to African countries.
It builds on the World Health Assembly Resolution on Cancer Prevention and Control (2005) and on previous Declarations from the International Atomic Energy Agency (Cape Town Declaration on Cancer Control in Africa, Dec 2006) and the International Union Against Cancer (World Cancer Declaration, July 2006). [only now? How long has it taken for the international professional health community to wake up? Better late than never].
We are calling on research institutions, international organisations, the pharmaceutical industry and national governments and civil society in developed and developing countries to unite and work together to enable the delivery of comprehensive cancer care to Africa. To establish comprehensive cancer care programmes in Africa requires the integration of clinical and public health systems so as to be truly comprehensive. A comprehensive cancer control strategy must bring together prevention, early detection and diagnosis, treatment, palliative care and the investment needed to deliver these services in terms of trained staff, equipment, relevant dugs and information systems, as well as public education. Any cancer control strategy must be guided by the needs of the country. Our vision for cancer control in Africa is a model authored by the Member State , with technical, policy and financial support provided by inter-agency alliances and governments in the developed world. African governments must be the driving force behind implementing cancer control in their countries with support at every level provided by the international alliance. Only in this way can achievable and sustainable national cancer plans that are evidence based and resource appropriate for African countries be developed.
There are grounds for optimism. With concerted early action cancer in Africa is a disease that can be tackled.
There are a number of fundamental areas of cancer control that form the cornerstones o f comprehensive cancer control programmes. The Six Essential Steps are:
Cancer surveillance/registries and national cancer plans
- Cancer surveillance programmes, including population based cancer registries, are required to collect and analyze data on the scale of the cancer burden in each country. They provide essential information on the incidence, prevalence, trends, mortality and survival rates which is required to help develop a realistic and sustainable national cancer plan. In addition, they help to evaluate the impact f prevention, early detection/screening, treatment and palliative care programmes. Such programmes must be fully supported by governments to ensure that they are complete and comprehensive.
African countries must be supported and assisted in developing sustainable national cancer plans that are evidence based, priority driven and resource appropriate for African countries. It is essential that national cancer plans be integrated with wider development by African governments to ensure a balanced health system is put in place according to national priorities.
In 2002 in Sub-Saharan Africa, there were more than half a million cancer deaths and almost 40% of these deaths can be explained by chronic infection and tobacco usage.
- Vaccination programmes against Hepatitis B virus, which causes liver cancer, and human papilloma virus, which causes cervical cancer, are effective ways to reduce the growing cancer burden and should be made widely available.
- Similarly, reducing tobacco consumption will also prevent many cancer related deaths. While lung cancer is on the increase in Africa, there is a real opportunity to avoid a lung cancer epidemic by implementing effective tobacco control now. Countries should be encouraged to implement the effective strategies identified in the WHO Famework Convention on Tobacco Control (FCTC). Simple steps such as implementing a ban on smoking in the workplace and in public places can be very effective.
Early diagnosis and screening programmes
- It is thought that up to one third of cancers in the developing world are curable if treated early. In particular childhood cancers have a high cure rate.
- Effective treatment programmes need to be put in place.
- Access to radiotherapy facilities is essential for both treatment and palliation. [and what about chemotherapy?]
- Palliative care is an essential part of the continuum of care of all adult and childhood cancer patients. For terminal cancers, palliative care is essential. Pain and symptom control, coupled with counselling and spiritual care, enables patients to die with dignity, preventing painful and distressing death.
- Palliative care should be introduced as early as possible to produce effective pain abd symptom control during disease progression, terminal and bereavement care.
- Palliative care must be introduced into health policies and be included in training at all levels.
- Accessibility of pain relieving medication, particularly morphine, is essential.
Training and Research
- A major obstacle tin the provision of adequate health care in Africa is the lack of trained health care professionals. The fundamental importance of having staff with appropriate training across the disciplines (clinical, management, logistics) cannot be overestimated, together with improved working conditions and increased job satisfaction.
- Established international cancer institutes and other training and health institutions have a major role. They should establish and implements mentoring and training programmes for African health professionals and scientists and help with capacity building partnerships with African institutions. The Global Health Workforce Alliance is currently coordinating an international effort on training of heathcare professionals.
- New local healthcare personnel must be trained so as to increase capacity and not drain the existing talent from other local needs in both the public and private sectors. This is necessary to ensure a long term sustainable workforce of healthcare professionals. African governments need to be helped to develop the much needed additional capacity.
- Training and research is a multilateral issue that links into employment and salary issues that must be addressed by the WHO, the IMF, the World Bank and other similar organisations. Sustained funding is necessary to ensure sustained funding.
The London Declaration is a call to action directed at all organizations: governments, international agencies, research bodies, global funders, the pharmaceutical industry, individual benefactors and NGOs.
In addition to my, maybe somewhat flippant, inline comments above, I do have some additional commentary to add.
The emphasis on radiotherapy. Chemotherapy medications were not mentioned at all – our daughter Kezia is not receiving any radiotherapy at all but we have been led to understand that the medications she is receiving are expensive and that they would be beyond the heathcare budgets of most African countries. Cynically, I wonder if this was due to the presence of pharmaceutical industry representatives at the conference. There is no discussion of access to drugs, property rights etc in the declaration. Given that countries such as India, Brazil and South Africa are taking on the pharmaceutical industry over the issue of producing cheap forms of drugs used in the treatment of HIV/AIDS, I am somewhat surprised this was not an issue addressed in the conference´s final declaration. On the positive side I will note that AfrOx is talking to GlaxoSmithKline about making its HPV/cervical cancer vaccine available in Africa.
Employment, training and salary issues, addressed in the last clause of the declaration, are certainly serious. Typically a doctor here has received the minimum medical training in Cuba, Russia, China, Portugal etc. No specialist training. Specialists are usually provided by the donor community and are often not available. There is no oncologist here. And even if there were, many of the tools of the trade would not be available.
Lumping together chronic infection and tobacco usage as major causes of cancer mortality in Africa is not useful. Yes, tobacco usage and related cancers are a significant cause of cancer throughout the world – “chronic infections” is a whole gamut of things.
To conclude I am very happy to see this initiative. I sincerely hope the international community takes action along the lines indicated.
Update: AfrOx has now published the London Declaration here.
Friday, May 18, 2007
Friday Update: I have just received the London Declaration from AfrOx. They will be posting it next week with other details of the conference. Apparently it is already in the public domain so this weekend I'll get a posting written. Watch this space on Monday.
First off, there is no one mechanism, but it all involves “free radicals” that are widely bandied about in the media, conventional and the full range of complementary medicine as harmful. But what exactly is a free radical? Why is it harmful ? And why to the heart ? And why should anthracyclines contribute to this?
The two major free radicals are known as “superoxide” and “hydroxyl”. I´ll illustrate with the superoxide.
A normal oxygen molecule is constituted of two oxygen atoms and is thus chemically written as O2. Each oxygen atom has a nucleus and six electrons with one pair shared with another normal oxygen atom with six electrons to form a normal O2 molecule. In a superoxide molecule there is a seventh electron unpaired electron and an additional negatively charged elctron (in red in the diagram below). It cannot bind to with its oxygen atom electron neighbour so is “free”, to bind with whoever it likes.
So we have a promiscuous molecule.
The hydroxyl free radical is similar in concept.
They can be called Oxidants.
The superoxide free radical is deployed by the immune system to bind to and damage the DNA of invading micro-organisms, preventing them from replicating and thus finishing them off. But in the same way (see later) it can attack the DNA of the body´s own cells as can the hydroxyl free radicals.
I´ll come back to the free radicals later but will now move onto muscle … don´t we love them! We can walk, talk, run and … breathe because of muscle. Sexy biceps and thighs!
There is an essential difference between leg, arm, cheek etc and heart muscle. The former react to stimulation from nerves (i.e. the nerve gives a tiny electric shock to the muscle which makes it move) whilst heart (or cardiac) muscles do it by themselves (more or less) without the help of nerves.
(see diagram below of normal muscle).
You can be totally paralysed with no signals from brain to nerves to muscles but your heart keeps working and you stay (miserably) alive!
However, heart muscle cells, in comparison with the other muscle cells, are distinctly lacking in protection from our promiscuous and aggressive free radicals. This protection is principally in the form of various enzymes – superoxide dismutase (happily known under the acronym SOD), catalase, glutathione peroxidase and glutathione reductase. Unfortunately, heart cells produce a lot less of these enzymes than regular muscle cells.
According to Wikipedia, an infected mouse with SOD production genetically inhibited, can die within 21 days of birth!
Nicotinamide adenine dinuclenotide (NADH) and Nicotinamide adenine dinuclenotide phosphate (NADHP) are enzymes produced in cells from Niacin (or Vitamin B3 – look at the ingredients of your multivitamins) with unique roles concerning energy production and DNA synthesis.
Part of the anthracycline accepts an electron from NADH or NADPH and becomes a free-radical which immediately passes that unpaired electron to molecular oxygen (O2) thus becoming the very harmful, free radical – superoxide.
To make itself more stable the free oxygen radical has to steal an electron from mitochondrial DNA (and I can see I will have to explain the difference between mitochondrial and nuclear DNA). Without that oxygen electron the DNA molecules are damaged and the cells cannot reproduce.
Eventually, this will lead to cell death and as the heart muscle cells don’t have much protection from free reductions.
This is an easy bit. If the anthracycline-induced anti-oxidants or free radicals, are roaming around, then introduce something that acts faster to mop them up before they hit the mitochondrial DNA in heart muscle cells.
Unfortunately, it seems that naturally-produced anti-oxidants, such as vitamins A, C and E (present in foods, drinks and vitamin supplements), are not adequate to this task so stronger anti-oxidant drugs have been introduced.
However, that is but one mechanism by which anthracyclines can damage the heart … (to be continued).
I hope she does not become a child-soldier, I hope she will not be raped, I hope she will not contract Aids etc, I hope she will be alive.
I hope for all the children. I am happy that Madeleine´s parents have committed any money left over to the search for missing children. Please contribute.
Rwanda, Burundi, Angola, Darfur, Somalia, Liberia, Sierra Leone, Uganda …
Thursday, May 17, 2007
Another notable organisation (site here) is the African Organisation for Research and Training in Cancer. Given the vast problems in cancer prevention and treatment in Africa it is heartening to read about innovative projects taking place across the continent.
I have linked to both on the right.
Wednesday, May 16, 2007
In other personal news Kezia resumed treatment today with a dose of intrathecal methotrexate. Last four doses of cytarabine in the coming days.
Tuesday, May 15, 2007
Mens Sana also posted about access to Tarceva, Docetaxel and Pemetrexel.
My weekend reading was the Karolinska Institute report on EU access to cancer drugs we cited here.
Research at Columbia University in the USA, cited in the report, has shown that access to more cancer drugs is directly correlated to increased one and five year survival rates. It is in the interests of cancer patients to have access to new drugs as quickly as possible.
On the situation in the UK, where the authors reported access to new drugs was one of the worst in the European Union, it made disturbing reading. I will cite come examples …
In the UK these national approvals are considered by three authorities – for Wales, the All Wales Medicine Strategy Group (AWMSG), for Scotland, the Scottish Medicines Consortium (SMC) and in England, the National Institute for Health and Clinical Excellence (NICE).
The report states that referral time to NICE “can be up to 18 months and this is prior to the beginning of any review”. The report does not cite referral times to the SMC but in my calculations below I will use the same..
Budgetary allocations for new treatments are not planned during England NICE evaluations so it is only after NICE has granted approval that budgetary planning for the next financial year (April to March in the UK) can take place. Knowing a little bit about the bean counters, I can I imagine that a drug approved in March 2007 (probably earlier), will not be approved for April 2007 but will only be approved for April 2008. Let us make budgetary planning six months/180 days.
The NICE review/approval time averages is 62 weeks, SMC is 12 weeks.
EU CHMP 418 days + referral to the national authority 72 days + NICE review 434 days + budgetary planning 180 days = 1104 days = 3.02 years
EU CHMP 418 days + referral to the national authority 72 days + SMC review 90 days + budgetary planning 180 days = 760 days = 2.08 years
One year in the life of a cancer patient is a long time.
Move to Scotland. Is Scotland negligent? Methinks not. Is Switzerland, not a member of the EU, and with excellent cancer drug uptake and treatment rates negligent? Methinks not.
Dr. Crippen has reported on a cancer patient moving from England to Scotland for treatment. Potentilla – I´m happy you´re there!
Let us move on …
In the US public (and I´m taking that to mean state) funding of cancer research is seven times that of the EU. Fair enough. In the EU cancer research funding is 50/50 split between state and charities. The UK, within the EU, is the highest investor in cancer research, with the charities contributing more than the average 50%.
“Yet this report illustrates that the UK lags behind other EU countries in terms of the ability of cancer patients to access new drugs.”
And this perhaps is the most horrific of all …
In the UK, in-patient care is taken into consideration for the funding of hospitals.The more in-patients the better for a hospital´s budget request. So although there is an oral form of 5-fluorocil, used in the treatment of colorectal and breast cancers, this is not advantageous to hospital budgets, so the IV form continues to be used even though it is disadvantageous to the patient – and I will go on to say disadvantageous to the economy as a whole as the patient’s labour hours are withdrawn, s/he occupies a bed, eats on the hospital etc.
Friday, May 11, 2007
Observer that exploratory talks had begun with GlaxoSmithKline (GSK), about how to make its new vaccine for cervical cancer, Cervarix, available in Africa. The vaccine, Cervarix, is not yet available in Britain on the NHS!
We see so many reports on "African" illnesses - malaria, HIV/Aids, malnutrition, guinea worm etc etc - it is easy to forget that people who live on this continent are just as prone to cancer as people in the "developed" world.
Kezia's story might even be considered typical - to a point. Born in Africa, growing up in Africa, seriously sick but no means available to diagnose what is wrong and even if there were, no resources to treat her leukaemia. She was lucky - her dad is British and had the resources to get her back to the UK for diagnosis and treatment. Otherwise she would be dead.
The University of Oxford's Africa-Oxford Cancer Consortium (AfrOx), set up by Professor David Kerr has organised the conference along with the International Atomic Energy Agency's Programme of Action for Cancer Therapy.
The Cancer Control in Africa conference brings together health ministers or their representatives from 22 African countries, donors, healthcare professionals, the pharmaceutical industry, cancer charities, research organisations and others aiming to begin creating an action plan for cancer control in Africa.
As David Kerr says "People don’t perceive cancer as a developing-world problem, but more than 70 per cent of all cancer deaths occur in low and middle income countries ... This figure is rising due to increased life expectancy, increased tobacco use and chronic viral infection. Survival rates for cancer in the developing world are often less than half those of more developed countries, and there is little pain relief. In Africa, cancer is a sentence to a painful and distressing death."
Mirroring yesterday's post on access to cancer drugs David Kerr announced in an interview with last Sunday's
Photo: Child with a tumour in the jaw due to Burkitt’s lymphoma cancer. Credit: Dr MA Ansary/Science Photo Library.
Thursday, May 10, 2007
A new report from the Swedish Karolinska Institute compares access to new cancer drug therapies across Europe. To quote "The Czech Republic, Hungary, Norway, Poland and the UK were consistently identified as below-average adopters of new cancer drugs for the treatment of breast cancer, colorectal cancer, lung cancer, non Hodgkin’s lymphoma and supportive care". France had the highest five-year survival rate in Europe at 71% for women and 53% for men, compared to 53% and 43% in the UK.
The government response to the report was typically defensive. The Beeb quotes a Department of Health spokesman explaining that the National Institute for Health and Clinical Excellence (NICE) was essential in ensuring that the NHS used the most effective treatments and that measures had been taken to speed up the approval process for key drugs.
"We are making good progress in ensuring cancer patients have access to the drugs they need".
Dr Crippen has previously reported on the low rates of survival for lung cancer patients in the UK compared with some other European countries and access (rather lack of) to the drug Tarceva on the NHS.
BBC story here. The full report can be read in html here or pdf here.
In another story the BBC reports that oral sex leads to a higher risk of contracting oropharyngeal (throat) cancer. So the moral of this story must be that it is better to engage in such activities ouside the UK!
Tuesday, May 8, 2007
Kafka-esque - you would have thought with bed shortages they would be keen to get rid of her!
Anyway, my brother is picking Jaime up from school and then going to the hospital. Hopefully, they will be ready for discharge. Update tomorrow.
Update: They finally got out of hospital around 18:00.
Monday, May 7, 2007
Kezia is going a bit stir-crazy, not directly from the chicken pox but because she has to be in isolation and is thus confined to a single room - cannot go outside, cannot go on the ward, wander the corridors, go to the cafeteria etc etc. I hear today that Nanda's mobile has gone on the blink, Kezia had to have a blood transfusion on Saturday and they hope to go home tomorrow.
Jaime, on the other hand. seems to be having a good time staying with M. When I phoned on Friday, he was on the beach at Morecambe Bay!
Which brings me on to cockles. Morecambe Bay was the scene of a tragedy in 2004, when 23 illegal Chinese immigrants illegally employed to collect cockles were drowned when the fast incoming tide overtook them. Morecambe Bay is notorious for its shifting (often quick-) sands and only the foolish, the ignorant or those with expert local knowledge venture out onto the low tide sands.
A new local supermarket has opened here (don't imagine 25 tills, just one), run by the Africa-ubiquitous Lebanese, and seems to be importing its wares from Spain including cans of cockles. Yum Yum!
This Welsh recipe, Cocos ac Wyau, from the cookery book North Atlantic Seafood by Alan Davidson, is sublime!
"Fry them in a little bacon fat, tossing them well in the fat before puring the beaten eggs over them. Stir well with a wooden spoon and season with black pepper".
Bacon fat not being available here, I use a small piece of finely-chopped chourizo and butter and serve with bread or toast. Delicious!
Alan Davidson's books are wonderful - the aforementioned, Mediterranean Seafood, The Seafood of South-East Asia are true literature. You can really take them to bed! His last work, as editor, The Oxford Companion to Food, was given to us by our friends M. and R. three years ago. An encyclopedia rather than a book of recipes, at 800+ pages, it still constantly illuminates and fascinates me, entertains me when overcome with insomnia at two o'clock in the morning.
Friday, May 4, 2007
And here is where you can email questions to her as she invited viewers and members of the audience to email her.
Fuck off Rob ... you got me onto this, and, yes, we need to go there.
Long term side effects
It seems that most of the long-term side effects are related to radiotherapy, particularly cranial, and bone marrow/stem sell transplants. We haven’t been there (and hopefully won’t) so I won’t talk about it. But if you want to research these side effects, I recommend you start at the Pediatric Oncology Resource Center (link right).
But what Kezia may or may not suffer from are heart problems caused by the anthracycline group of drugs – in her case daunorubicin and doxorubicin.
First, let’s look at the heart. Four chambers – the right atrium and ventricle, the left atrium and ventricle. Atriums on the top, ventricles on the bottom. The right side receives blood in the atrium. The blood is passed to the right ventricle which pushes it to the lungs to receive oxygen. The blood then passes to the left atrium and then the left ventricle which then pumps it back into the blood system.
The anthracyclines can effect the thickness of the wall of the left ventricle making it thinner (I’ll go into the exact process of how they do this another time – and I really don’t understand why just the left ventricle). Any decrease in the left ventricle’s wall of muscle will both decrease its strength and increase the volume of the ventricular chamber allowing more blood to enter.
Additionally, as one part of ventricular wall is the valve between the atrium and ventricle, the valve tissue will also become thinner. The pumping action of the left ventricle becomes weaker due to less muscle (reduced contractility) and more blood and cannot keep up with pumping rate of the right side. More blood is also left in the heart after each beat (increased afterload). The increased amount of afterload will cause the ventricle to dilate further and the atrium-ventricular valve will fail to close completely.This condition is known as cardiomyopathy.
If the blood cannot be pumped out of the left ventricle, it “backlogs” into the atrium, the small blood vessels of the lungs and finally the right side of the heart causing the typical symptoms of what is known as congestive heart failure.
These symptoms include shortness of beath, chest pain, increasing fatigue, swelling of the ankles and a dry cough.
Epidemiology and risk factors
Much debate here. But the following seem to be badly prognostic in no particular order: a cumulative dosage of anthracyclines above 300 mg/m2 of body surface area (Kezia has received 315 mg/m2), female sex (as they tend to have more fat and anthracyclines are not absorbed in body fat i.e. the anthracyclines will accumulate at higher concentrations in female compared to male muscle including the heart per unit of body surface area), younger age (the heart is growing)- Kezia was just 2 at diagnosis and glucocortisoid treatment as this increases body fat (Kezia is and will be taking dexamethasone until the end of her treatment).
Whether Kezia will develop heart problems has yet to be seen. Heart tissue damage can be instantaneous on administration of anthracyclines but the heart can also recover.
The principal tool for checking the heart is the echocardiogram – similar to the ultrasound of an unborn foetus but of the heart. By this they can measure the thickness of the left ventricle wall.
Our consultant has advised annual checkups until puberty but other medical papers I’ve read advise an annual echocardiogram for life (although they don’t really know as long-term monitoring of childhood cancer patients has only really just begun).
If Kezia does develop cardiac problems, there are a host of drugs that can effectively be used as treatments/prophylaxes.
So although, hopefully, I won't live longer than Kezia, I hope I'll lve long enough to alert her and she'll be able to take care of herself.
P.S. Rob, I am sorry for swaering at you. You took me here and it's taken four weeks to get a grip on it, and I appreciate it. Best wishes to Norah, lauren and Fergus.
P.P.S Thanks Patty for the papers - readers, the Ped Onc Resource Center has an excellent page on this.
Thursday, May 3, 2007
It starts with definitions - alternative is difficult as it can be defined both as "not mainstream" or as a substitute for proven medical practice.
As a whole medical practitioners accept, even welcome, complementary medicine when it alleviates the psychological stress of cancer and cancer treatment. There is an obvious concern that some common CAM products may adversely interact with commonly prescribed medicines so it would be wise to consult a medical professional before taking this or that.
We were advised by our consultant at the beginning of treatment "to be cautious of web sites claimimg alternative cures for cancer".
Indeed the horror stories presented at Respectful Insolence's post Magical Thinking versus Lymphoma (and follow-up here) where parents withdrew their children from standard treatments and put them on unproven quackery are beyond belief! And in this context I would recommend Quackwatch if you really are so gullible.
Kezia's exposure to complementary approaches has been minimal - if you count the hospital clown and music sessions and play as complementary, although I think everyone would agree that Laughter is Medicine.
Two of his main themes have been cuts in maternity services and the new procedures for applying to junior doctor training positions (known as MMC/MTAS) which have been widely criticised and culminated last week in two massive IT security breaches involving MTAS.
Tonight sees the airing on BBC1 of two programmes of note. The current affairs documentary Panorama focusses on cuts in maternity services when it sent an undercover reporter to work in two maternity units. Links here and here. The programme airs at 20:00 BST tonight.
The second programme is Question Time at 22:35 on BBC1. A panel of politicians and experts fields questions from the public on issues of concern. Tonight sees Patricia appearing on the panel. I hope she watches Panorama beforehand.
Both programmes can also be viewed on the BBC website for those who miss them or are not in the UK.
For a general overview of the NHS's National Programme for IT (the "Spine") and its many difficulties I would thoroughly recommend Tony Collin's IT Project Blog.