Introduction
We are all aware of Una Crudden and all the lobbying she
is doing for a solo ovarian cancer awareness campaign in Northern Ireland. As
such, we need to start thinking about the timing of the creation of the
magic words “cancer patient” from an "ovarian cancer" point of
view. What do I mean by this? From a legal point of view we need to
answer the question as to when exactly does someone become a “cancer
patient” and benefit from the rights enshrined in the European Cancer Patient's
Bill of Rights. More specifically, at what point does a woman who is unaware
that she has ovarian cancer become a “European Cancer Patient.”?
In their article "A Catalyst for Change: The European Cancer Patient's Bill of Rights", the Society for Translational Oncology reference is made to the fact that strengthening health care systems is key to delivering strategies that will gain traction in optimising cancer outcomes. It is further stated that under-resourcing of cancer health care, particularly in the context of an increasing cancer burden, will lead to increased morbidity and mortality, spiralling associated health costs, and significant loss of productive life years and will negatively affect the health of European citizens and economies.
Professor Lawlor warned of a "cancer epidemic" in the future at the launch of the European Cancer Patient's Bill of Rights. In my opinion this will be like a big "cancer tsunami.". So what will be the difference between surviving and being destroyed?
Maybe our health care leaders should take some inspiration from the late Mayor Wamura who was laughed at because he spent £20 million building a big sea wall and floodgates to protect his village Fudai from a future tsunami. It took 12 years to build and had been regarded as a £20 million folly.In the rubble of Japan's north east cost the village of Fudai, 320 miles North of Tokyo stands as tall as ever following the tsunami .The 3000 residents owe their lives to the late Mayor Kotaku Wamura because he wanted to defend his people from the tsunami. At his retirement the late Wamura stood before village employees to bid farewell. He said:
Maybe our health care leaders should take some inspiration from the late Mayor Wamura who was laughed at because he spent £20 million building a big sea wall and floodgates to protect his village Fudai from a future tsunami. It took 12 years to build and had been regarded as a £20 million folly.In the rubble of Japan's north east cost the village of Fudai, 320 miles North of Tokyo stands as tall as ever following the tsunami .The 3000 residents owe their lives to the late Mayor Kotaku Wamura because he wanted to defend his people from the tsunami. At his retirement the late Wamura stood before village employees to bid farewell. He said:
"Even if you encounter opposition, have conviction and finish what you start. In the end, people will understand."
1. The background to the European Cancer Patient’s Bill of Rights.
Before getting into the nitty gritty of the European Cancer
Patient’s Bill of Rights it is worth mentioning the two “medical geniuses” that
walk amongst us here in Belfast, Northern Ireland. Professor Mark Lawler is a
Professor of Translational Cancer Genomics and is based at Queen’s University
Belfast. He is the project lead with European Cancer Concord. Translational
medicine is a discipline which aims to improve the health of individuals and
the community by “translating” findings into diagnostic tools, medicines,
procedures and education.
Professor Lawler has a very impressive CV and in short he
is a professor with at least 20 years experience in cancer research with
a significant record of research achievement having won numerous national and
international awards. He describes himself as a “passionate advocate for
development of outreach activities and fostering increased public understanding
of science/medicine.” Professor Patrick Johnston has been described as a world renowned cancer specialist from Queen's University Belfast and as someone who is leading the fight to improve cancer survival rates in Europe. It is stated that his work has culminated with the launch of the Bill which aims to address the disparities that currently exist in cancer care from one European country to the next. At the time of the launch Professor Johnston was the dean of the School of Medicine, Dentistry and Biomedical Sciences at Queen's University Belfast and has been at the forefront of cancer research for the past 25 years. The Professor is now Queen's University Belfast's new president and vice-chancellor.
Professor Johnston co-chairs the ECC which involves 17
countries and represents more than 1000 national organisations and millions of
cancer patients and survivors. He said "In Northern Ireland we have seen
the difference that a comprehensive cancer care and research programme can have
on patient outcomes....the bill of rights aims to set a standard that all
European countries can aspire to, ensuring that all citizens are entitled to
optimum cancer care regardless of where in Europe they live."
Gabby Cruze, Executive Director of
the Society of Translational Oncology kindly provided me with a copy of the
full article “A Catalyst for Change: The European Cancer Patient's Bill
of Rights” and the link to the full
article is below. The Society have set
out in a table the disparities in cancer health care across Europe. Topping the
table is (i) patient-oriented cancer education (ii) access to information and
support.
2.
The launch of the European Cancer Patient’s Bill of Rights
The European Parliament chose World Cancer Day on 4th
of February, 2014 to launch the European Cancer Patient’s Bill of
Rights in Strasbourg, France. Health care leaders, Members of the European
Parliament against Cancer (MAC) and a group of patient advocacy organisations
were present at the launch. The European Commissioner for Health Tonio Borg,
stated the following at the launch of the Bill of Rights:
“ ..what better day to do
so than on World Cancer Day –a day which draws world attention to cancer, and
the need to pursue our efforts to improve the lives of all those who live with
cancer.”
Professor Lawler gave a presentation at the launch of the
European Cancer Patient’s Bill of Rights on behalf of the ECC. This
presentation can be viewed here and believe me he is worth watching https://sto-online.org/ecp-bill-of-rights
Professor Lawler stated that the Bill of Rights is a patient focussed
initiative and an equal partnership between patients and health care leaders.
He explained that the bill is a “catalyst for change” and “ we really need a
change”.
What is the Cancer Patient’s Bill of Rights/Patient Charter.
The Bill of Rights is a patient charter to empower European
citizens to achieve both equity and innovation in cancer care and research.
What do these “big words” actually mean in layman’s terms.The word “equity”
simply means fairnes and “innovation”means a new idea or way of doing
something. The word “charter” by definition is simply a written statement of
the rights of a specified group of people. Indeed, the word “Charter” is
commonly used for documents which set out rights of patients. It is common to
find patient care charters now in GP practices, Hospital Trusts websites and
they set out what you can expect from your GP , the surgery, doctors and
hospitals and in return what the GP or hospital trust expects from you, the
patient.
Therefore, I understand the European Cancer Patient’s Bill of
Rights to be a powerful document for patients which they can use to ensure (i)
they receive fairness with their cancer care and (ii) benefit from new
developments in research.
4. What are the European Cancer’s Patients Rights. Three patient centred principles (called articles) underpin the European Cancer Patient’s Bill of Rights.
Article 1:
The right of every European citizen to
receive the most accurate information and to be proactively involved in his/her
care.
Article 2:
The right of every European citizen to
optimal and timely access to appropriate specialised care, underpinned by
research and innovation.
Article 3:
The right of every European citizen to
receive care in health systems that ensure improved outcomes patient
rehabilitation, best quality of life and affordable healthcare.
5. Why do we need a European Cancer Patient’s Bill of
Rights.
European Cancer Concord stated in their press release
relating to the Bill that there are significant differences in cancer
incidences and mortalities within Europe reflecting inequalities in access to
optimal cancer care between different national healthcare systems. Dacian Sarbu
( MEP, Romania) stated “In the current socio-economic circumstances in
Southern, Eastern and Central Europe, where the public health systems are under
constant pressure from austerity measures, cancer patients and their families
are the first to feel the impact on their health, finances and quality of life.”
6.
Analysis
A number of things struck me when I started doing my research
for this article. Professor Lawler opened his presentation on behalf of the ECC
with a reference to the Roman Poet Virgil and in particular stated “The
Greatest Wealth is Health”. He referred to the increasing economic cancer
burden in Europe and opined that “cancer is an epidemic waiting to happen.” Professor Lawler stated that the bottom line is that “cost
effective cancer care and cancer research excellence can contribute
significantly to the wealth and health of the European citizen.” We are all aware of Una Crudden and all the lobbying she is doing for a solo ovarian cancer awareness campaign in Northern Ireland. As stated at the beginning of this article, we need to start thinking about the timing of the creation of the magic words “cancer patient” from an "ovarian cancer" point of view. What do I mean by this? From a legal point of view we need to answer the question as to when exactly does someone become a “cancer patient” and benefit from the rights enshrined in the European Cancer Patient's Bill of Rights. More specifically, at what point does a woman who is unaware that she has ovarian cancer become a “European Cancer Patient.”?
Does she become a cancer patient on the day she is given her terminal prognosis or does she become a cancer patient on the first day she seeks medical help and is given a misdiagnosis? In my view, the answer to the two questions raised above is "no". A woman becomes a cancer patient on the very day that the ovarian cancer starts in her body. As such, she is entitled to have her rights set out in the European Cancer Patient’s Bill respected and honoured not from the date of diagnosis but on the date that the cancer starts.
In my view, the woman who has ovarian cancer (whether she
knows she has it or not) is a European Cancer Patient with the (i) the right to receive the most accurate
information and to be proactively involved in her care (ii) the right to optimal and timely access
to appropriate specialised care, underpinned by research and innovation and
(iii) the right to receive care in
health systems that ensure improved outcomes, patient rehabilitation, best
quality of life and affordable healthcare. Itis my view that this "optimum
cancer care" includes information, education and awareness in the form of
solo campaigns in order to avoid misdiagnosis or late diagnosis
Leaving Europe aside,
lets look at the city of Belfast. We have two medical geniuses with a combined experience of at least 80 years or so in cancer research on one side of
the city. These two men are
giving their all to cancer patients locally,
at a European level and globally. On the other side of the
city we have our health care leader, our
"partner" who won't approve a solo awareness campaign for
ovarian cancer. Where is the equity/fairness in this decision for
our European Ovarian Cancer Patients? How are European Ovarian Cancer Patients
being empowered as per the articles in the bill?We as European Cancer Patients have the right to solo awareness campaigns and to have our rights respected and honoured by our partners - our health leaders. We are now "partners" as well as "patients" - and partnership means equality. From a patient's perspective it seems that our health care leader is relying on the "floodgates" argument i.e., if one cancer group is successful with their plea for a solo campaign every other cancer group will follow. In my view it seems that the mentality is instead of helping all of them we will help none of them. This is exactly the type of discrimination that the European Cancer Patient's Bill of Rights is aimed at.
Ms Una Crudden has
pointed out time and time again the inequalities and injustices that
exist such as (i) Health Minister announced launch of ovarian cancer
campaign in March, 2013 but it never happened (ii) If she had access
to the cancer drug avastin like English women she would live year(s) more.
(iii) Lives at stake in Northern Ireland because of 34 cancer drugs
(iv) Research concludes Northern Ireland has the worst
awareness in all of EU at 3%. None of the women in NI questioned in a
public survey conducted by the UK wide charity Target Ovarian Cancer were
aware of the symptoms (v) Three out of four women (75%) diagnosed
have three to five years to live due to late diagnosis (vi) Una's
cancer treatment is costing £ 100,000 (vii) streamlining operational
costs in our health services can be achieved by a solo ovarian cancer campaign.
Una has now the support of all political parties as well as the Health Committee. The Society for Translational Oncology have stated that the current disparities between European nations at all stages of the cancer patient's journey are no longer acceptable. Let the European Cancer Patient's Bill of Rights be a catalyst for change. We now need to get Una's campaign over the finishing line. Please sign the petition referring to the European Cancer Patient's Bill of Rights. Share the petition and tweet your support for #tealtakeover. Link to petition below.
I
Please defend us against cancer, protect our rights and
protect our lives.
#tealtakeover
LINKS
https://www.change.org/en-GB/petitions/northern-ireland-health-minister-edwin-poots-northern-ireland-needs-a-solo-ovarian-cancer-awareness-campaign-there-has-never-been-one-before-make-it-happen-in-2014
https://sto-online.org/european-cancer-concord
https://sto-online.org/ecp-bill-of-rights
https://www.change.org/en-GB/petitions/northern-ireland-health-minister-edwin-poots-northern-ireland-needs-a-solo-ovarian-cancer-awareness-campaign-there-has-never-been-one-before-make-it-happen-in-2014
https://sto-online.org/european-cancer-concord
https://sto-online.org/ecp-bill-of-rights
http://theoncologist.alphamedpress.org/content/19/3/217
http://www.dailymail.co.uk/news/article-1386978/The-Japanese-
mayor-laughed-building-huge-sea-wall--village-left-untouched-tsunami.html
Link to 2013 BBC NI report on Ovarian cancer by health correspondent Marie-Louise Connelly http://www.bbc.co.uk/news/uk-northern-ireland-21155100
http://www.bbc.co.uk/news/uk-northern-ireland-26016428
http://en.wikipedia.org/wiki/Translational_medicine.http://www.dailymail.co.uk/news/article-1386978/The-Japanese-
mayor-laughed-building-huge-sea-wall--village-left-untouched-tsunami.html
Link to 2013 BBC NI report on Ovarian cancer by health correspondent Marie-Louise Connelly http://www.bbc.co.uk/news/uk-northern-ireland-21155100
http://www.bbc.co.uk/news/uk-northern-ireland-26016428
