Bowel Cancer 2012 CHALLENGE

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					                                                    Bowel Cancer
                                                    2012 CHALLENGE




      The National Bowel Cancer Coalition

Bowel Cancer Australia
 Awareness, Education, Support & Medical Research
                                                                                                                                         Our vision for
Foreword                                                                                                                                 bowel cancer in Australia

Bowel cancer is a major public health problem in Australia.     This consensus statement outlines what we can do to                      The National Bowel Cancer Coalition is committed to
One in 12 Australians will develop bowel cancer in their        reduce the number of unnecessary deaths.                                 reducing the number of people affected by bowel cancer
lifetime. The disease kills around 80 Australians every week.                                                                            – Australia’s second biggest cancer killer – and improving
                                                                Our challenge to the community and all levels of
It is the most common internal cancer to affect both men                                                                                 the lives of patients with this disease.
                                                                government is to work together to make this a reality so
and women and is the second biggest cancer killer of
                                                                we can save thousands of lives every year.                               We aim to elevate public awareness of the symptoms
Australians.
                                                                                                                                         of bowel cancer, as well as to promote early diagnosis,
                                                                Bowel cancer is not pretty but it’s pretty important that we
In 2008, five independent, non-profit organisations agreed                                                                               improve access to treatments, provide support for all those
                                                                do something about it.
to coordinate individual activities and work collaboratively                                                                             affected by this disease and advocate for R&D and clinical
                                                                We	invite	you	to	join	our	fight	to	save	lives.
as a National Bowel Cancer Coalition:                                                                                                    trials funding to better understand this disease.
                                                                The National Bowel Cancer Coalition.
•	 Bowel	Cancer	Australia                                                                                                                The implementation of the Australian Government’s
                                                                Mr	Julien	Wiggins		-		CEO, Bowel Cancer Australia                        National Bowel Cancer Screening Program (NBCSP) from
•	 Bowelscan
                                                                Dr	Les	Rae	OAM - Chairman, Bowelscan                                     2006 has been a welcome first step in tackling this major
•	 Cancer	Voices	Australia
                                                                Mr	John	Stubbs		-		EO, Cancer Voices Australia                           disease. However, the National Bowel Cancer Coalition
•	 Let’s	Beat	Bowel	Cancer                                                                                                               believes that much remains to be done to achieve a
                                                                Prof	Adrian	Polglase - Chairman, Let’s Beat Bowel Cancer

•	 Scott	Gillon,	Patient                                                                                                                 greater public profile of the disease and to deliver a
                                                                Mr	Scott	Gillon		-		Patient
                                                                                                                                         brighter future for bowel cancer patients.
•	 The	Colorectal	Foundation                                    A/Prof	Graham	Newstead	AM		-		Chairman, The Colorectal Foundation

                                                                                                                                         We have therefore developed the ‘Bowel Cancer 2012
We aim to raise pubilc awareness of bowel cancer to
                                                                                                                                         Challenge’, which sets out our vision for combating the
reduce the number of Australians dying unnecessarily
                                                                                                                                         disease in Australia and improving bowel cancer patient
from this disease and improve patient outcomes of
                                                                                                                                         outcomes over the next three years. It is our belief that
those diagnosed.
                                                                                                                                         by working together with all levels of government
The Australian Government’s National Bowel Cancer                                                                                        and the community we can deliver a significant
Screening Program is a welcomed initiative,                                                                                              change in the number of Australians dying
but we need to do more.                                                                                                                  from the disease and in the quality of bowel

National Health & Medical Research Council (NHMRC)                                                                                       cancer services for patients and their families.

guidelines recommend screening for bowel cancer for
people aged 50 and over at least every two years.

Early diagnosis is the only way we can save lives.

“Screening for bowel cancer has the potential
                                                                           The National Bowel Cancer Coalition acknowledges the
to prevent as many as 2,000 deaths each year.” 1
                                                                      in-kind support received from Roche Products. Preparation of the
                                                                    Bowel Cancer 2012 Challenge was funded by Bowel Cancer Australia.
                                                                      The National Bowel Cancer Coalition maintains editorial control
                                                                                    over content within this document.




                                                                                                                                                                                                       www.bowelcancercoalition.org
                                                                                           Improving public awarness of Australia’s
Our 2012 Challenge                                                                         second biggest cause of cancer deaths

The National Bowel Cancer Coalition calls for:                                             The	National	Bowel	Cancer	Coalition	calls	on	the	               Prevention	messages	should	be	included	with	any	
                                                                                           Australian	Government	to	launch	a	comprehensive	                communications	program,	and	the	direct	links	between	
   a
•	 	 	coordinated,	national	awareness	and	education	
   campaign to raise the profile of bowel cancer,                                          communications	program	on	the	early	symptoms	of	                bowel	cancer	and	diet/exercise	should	be	clearly	
   proportional to the burden of the disease in Australia;                                 bowel	cancer	and	preventative	measures.	This	would	             publicised	by	all	levels	of	Government.
                                                                                           address	the	issue	of	low	awareness	of	the	disease	and	
•	 	mproved	uptake	of	the	National	Bowel	Cancer	
   i                                                                                                                                                          P
                                                                                                                                                           •	 	 hysical	activity	has	a	clear	protective	effect	against	
   Screening Program, and its extension to include biennial                                support	uptake	of	the	national	screening	program.
                                                                                                                                                              bowel cancer. 4
   screening for people aged 50+, in accordance with
                                                                                              N
                                                                                           •	 	 early	half	of	the	general	public	(44%)	are	not	aware	of	
   National Health & Medical Research Council guidelines;                                                                                                     T
                                                                                                                                                           •	 	 he	National	Bowel	Cancer	Coalition	supports
                                                                                             any bowel cancer symptoms they should be looking
                                                                                                                                                              Australian Government, State and Territory health
   r
•	 	 esourcing	for	quick,	accurate	diagnosis	and	clinically	                                 out	for;	and	only	56%	of	people	over	the	age	of	50	years	
   effective treatments at the right time in the right setting                                                                                                initiatives such as Go for 2 fruit and 5 vegetables and
                                                                                             (the Australian Government’s National Bowel Cancer
   for all patients; and                                                                                                                                      How do you measure up?
                                                                                             Screening Program target age group) intend to test
•	 	 ecognition	of	the	value	of	prolonged,	quality	life.
   r                                                                                                                                                          D
                                                                                                                                                           •	 	 ietary	links	to	bowel	cancer	should	also	be	presented	
                                                                                             themselves for bowel cancer. 2
                                                                                                                                                              to the public, including that high intakes of fibre reduce
                                                                                           The	National	Bowel	Cancer	Coalition	calls	on	the	
                                                                                                                                                              the risk of bowel cancer; and that high intakes of red
                                                                                           Australian,	State	&	Territory	Governments	to	invest	
                                                                                                                                                              or processed meat and fat increase the risk of bowel
                                                                                           resources	into	providing	bowel	cancer	education	for	GPs	
                                                                                                                                                              cancer and stomach cancer; and eating lots of fish may
                                                                                           and	for	using	GP	practices	as	a	channel	for	providing	
                                                                                                                                                              reduce the risk of bowel cancer. 5
                                                                                           information	to	the	public.

                                                                                              O
                                                                                           •	 	 verseas	experience	shows	there	are	too	many	cases	
                                                                                             of patients being misdiagnosed, reflecting in part the
                                                                                             difficulty that GPs, among others, have in separating
                                                                                             bowel cancer symptoms from those of other conditions,
                                                                                             with resulting longer waits for diagnosis. 3

                                                                                              I
                                                                                           •	 	mportant	symptom	messages	need	to	be	relayed	
                                                                                             to those groups who fall outside the National Bowel
                                                                                             Cancer Screening Program age cohorts, and screening
                                                                                             options for them made clear and accessible.




          “The National BowelCancer Coalition’s 2012 Challenge is to see a significantly
     increased profile of bowel cancer within Australia and to improve patient outcomes”




                                                                                                                                                                                           www.bowelcancercoalition.org
                                                                                                                           Prompt access to
Screening for Bowel Cancer                                                                                                 diagnostic colonoscopies

The	National	Bowel	Cancer	Coalition	calls	on	the	             The	National	Bowel	Cancer	Coalition	calls	on	the	            The National Bowel Cancer Coalition calls on the Australian
Australian	Government	to	fully	implement	the	National	        Australian	Government	to	publish	targets,	monitor	           Government to increase funding under Australian Health
Bowel	Cancer	Screening	Program	by	2012	through	the	           uptake	of	the	screening	program	and	take	steps	to	           Care Agreements for follow-up colonoscopy services to
provision	of	biennial	FOBT	screening	for	people	50+,		in	     improve	the	uptake	amongst	all	groups.                       underpin and facilitate expansion of the National Bowel
accordance	with	National	Health	&	Medical	Research	                                                                        Cancer Screening Program.
                                                                 N
                                                              •	 	 ational	Bowel	Cancer	Screening	Program	data	shows	
Council	guidelines.
                                                                that	low	uptake	is	a	very	significant	issue	(42.9%)	7;        P
                                                                                                                           •	 	 atients	recording	a	positive	FOBT	need	a	diagnostic	
   T
•	 	 he	Program	was	launched	in	2006	for	people                 FOBT screening appears to require ongoing recruitment        colonoscopy from a qualified practitioner. Delays in
  turning 55 and 65.                                            and awareness-raising efforts to maintain adequate           accessing this vital service will adversely affect the
                                                                levels of participation. 8                                   chances of a successful outcome for the patient.
   T
•	 	 he	National	Bowel	Cancer	Coalition	welcomes
  the Program’s extension in 2008 to include people              T
                                                              •	 	 he	National	Bowel	Cancer	Coalition	calls	for	time-         W
                                                                                                                           •	 	 aiting	times	from	initial	detection	to	confirmatory	
  turning 50.                                                   based uptake targets to be set and publicly announced        diagnosis should be recorded on a national register and
                                                                and for performance against these targets to be              published and compared against target performance
   H
•	 	 owever,	the	Australian	Government	has	yet	to	commit	
                                                                published regularly with initiatives in place to rectify     standards.
  to providing biennial FOBT screening for people 50+,
                                                                shortfalls.
  raising the possibility of new tumours developing, or                                                                       A
                                                                                                                           •	 	 	national	audit	of	colonoscopy	services	is	required	
  new cancers that were missed the first time progressing        F
                                                              •	 	 unds	must	be	invested	by	the	Government,	working	         to identify areas of low availability and to rectify the
  to a more dangerous stage.                                    with other stakeholders and charities as necessary, to       deficiency.
                                                                develop materials and promotions focusing on low-
   T
•	 	 he	National	Bowel	Cancer	Coalition	wants	to	see	full	
                                                                uptake groups, where relevant.
  implementation of the Program by 2012.

   P
•	 	 eer-reviewed	research	has	shown	that	biennial	FOBT	
  screening is more effective at detecting bowel cancers;
  will	cut	mortality	by	15%	amongst	the	screened	
  population; and is more cost effective, reducing the cost
  per	life	year	saved	from	$41,321	to	$36,080.	6




                                                                                                                                                                                         www.bowelcancercoalition.org
Prompt and improved access to treatment
choices, information and patient care                                                                                              The price of life

Patients	should	be	better	informed	about	all	their	              The	National	Bowel	Cancer	Coalition	calls	for	an	                 The	National	Bowel	Cancer	Coalition	believes	that	the	         Clinically	effective	drugs	should	be	made
treatment	choices,	and	decide	together	with	their	               improved	overall	patient	experience,	monitored	through	           last	few	months	of	a	person’s	life	are	more	valued	and	        available	quickly.
clinician	on	the	best	treatment	plan	for	them	as	an	             a	National	Patient	Experience	Survey.                             are	qualitatively	different	to	other	months	of	thier	lives,	
                                                                                                                                                                                                     T
                                                                                                                                                                                                  •	 	 he	National	Bowel	Cancer	Coalition	believes	that	cost	
individual.                                                                                                                        and	that	cost-effectiveness	criteria	for	measures	which	
                                                                    A
                                                                 •	 	 	National	Patient	Experience	Survey	should	be	                                                                                considerations should be eased to allow bowel cancer
                                                                                                                                   can	extend	those	last	months	should	be	applied	more	
   T
•	 	 he	clinician	and	patient	should	decide	what	is	right	for	      conducted at set periods, with a specific target set to                                                                         patients to receive treatments which have been proved
                                                                                                                                   generously.
  the patient including the setting for treatment.                  improve patient experience for bowel cancer.                                                                                    to be clinically effective.
                                                                                                                                      T
                                                                                                                                   •	 	 here	should	be	a	shift	from	only	valuing	treatments	
•	 	 he	National	Bowel	Cancer	Coalition	calls	for	the	
   T                                                             •	 	 here	should	be	a	framework	of	supportive	care	to	
                                                                    T                                                                                                                             The	National	Bowel	Cancer	Coalition	calls	on	the	
                                                                                                                                     that cure, to those that manage prolonged life.
  establishment of a pilot to assess the effectiveness of           minimise and manage the side-effects of cancer                                                                                Australian	Government	to	make	changes	to	the	
  including the patient in the Multi-Disciplinary Team              treatment across primary and secondary care.                   •	 	 atients’	rights	to	determine	the	amount	of	treatment	
                                                                                                                                      P                                                           Pharmaceutical	Benefits	Scheme	(PBS)	system.
  meetings which discuss their treatment plan.                                                                                       they wish to undergo must be recognised. When
                                                                 The	National	Bowel	Cancer	Coalition	calls	for	an	                                                                                   T
                                                                                                                                                                                                  •	 	 he	National	Bowel	Cancer	Coalition	calls	for	the	
                                                                                                                                     patients are affected with the advanced stages of bowel
•	 	 he	National	Bowel	Cancer	Coalition	calls	on	the	
   T                                                             investment	in	the	recruitment	and	training	of	specialist	                                                                          Pharmaceutical Benefits Advisory Committee (PBAC)
                                                                                                                                     cancer, they along with their clinicians, should have
  Australian Government to apply more lenient                    Bowel	Cancer	Nurses.	                                                                                                              to revise upwards its standard cost-effectiveness
                                                                                                                                     access to available treatment options to give them
  cost-effectiveness criteria to drugs for treating terminal                                                                                                                                        measures to reflect the potential of new treatments.
                                                                    T
                                                                 •	 	 he	specially	trained	registered	nurses	will	provide	vital	
                                                                                                                                     additional quality of life.
  diseases, including bowel cancer.
                                                                    information, care, practical and emotional support to                                                                            T
                                                                                                                                                                                                  •	 	 he	National	Bowel	Cancer	Coalition	calls	for	the	PBAC	
                                                                                                                                      P
                                                                                                                                   •	 	 rolonging	quality	life	enables	a	patient	to	normalise	
Better	information	must	be	provided	to	patients	                    patients diagnosed with bowel cancer, their families                                                                            to increase its cost-effectiveness thresholds for drugs
                                                                                                                                     their life in many basic areas; perhaps returning to work,
throughout	their	patient	journey.                                   and carers.                                                                                                                     which prolong quality of life in terminal (and potentially
                                                                                                                                     so that they can continue to support family and feel
                                                                                                                                                                                                    terminal) diseases.
   P
•	 	 atients	require	an	adequate	level	of	information	
                                                                                                                                     valued again; or spending vital time with family and
  provision, particularly with regards to the understanding                                                                                                                                          T
                                                                                                                                                                                                  •	 	 he	National	Bowel	Cancer	Coalition	calls	for	further	
                                                                                                                                     friends. This is important for both the patient and their
  of treatment plans, financial benefits and support or                                                                                                                                             streamlining of the PBAC appraisal, approval and PBS
                                                                                                                                     loved ones to help come to terms with the illness.
  self-help groups.                                                                                                                                                                                 listing processes.
                                                                                                                                      D
                                                                                                                                   •	 	 rugs	for	advanced	bowel	cancer	can	in	some	cases	
   T
•	 	 here	is	overseas	evidence	that	bowel	cancer
                                                                                                                                     reduce tumour size so significantly that surgery is then
  patients receive less information than cancer
                                                                                                                                     possible, providing further hope to patients and the
  patients on average. 9
                                                                                                                                     possibility of eventual remission.
   S
•	 	 upport	must	be	given	to	the	voluntary	sector
  which primarily takes responsibility for providing
  patient information.




                                                                                                                                                                                                                                  www.bowelcancercoalition.org
About Bowel Cancer                                                                                                        About the National Bowel Cancer Coalition

Bowel	cancer	is	a	disease	of	the	large	bowel	(colon)           What	are	the	symptoms	of	bowel	cancer?                     Given the impact of bowel cancer on our society and the                                 1. Minister for Health & Ageing, the Hon Nicola Roxon, Free bowel cancer
                                                                                                                                                                                                                     tests will save lives, Media Release, 8 May 2008.
or	rectum.		It	is	also	sometimes	called	colorectal	or                                                                     alarmingly low level of awareness and understanding
                                                               Not everyone will have symptoms and the symptoms may                                                                                               2. Research conducted by ANOP in November 2007 in partnership with
colon cancer.                                                                                                             of the disease, a group of independent, non-profit                                         Roche Products.
                                                               vary. The most common symptoms to look out for are:
                                                                                                                                                                                                                  3. NAO National Patient Survey 2004, Tackling Cancer: Improving the Patient
                                                                                                                          organisatons have agreed to coordinate individual
It	is	the	second	largest	cause	of	cancer	deaths	in	                                                                                                                                                                  Journey.
                                                                  A
                                                               •	 	 	persistent	change	in	bowel	habit	especially	going	
                                                                                                                          activities and work collaboratively as a National Bowel
Australia,	with	80	people	dying	every	week	from	the	                                                                                                                                                              4. UK Chief Medical Officer, ‘At least five a week: Evidence
                                                                 more often or looser motions for several weeks.                                                                                                     on the impact of physical activity and its relationship to health’ , 2004.
                                                                                                                          Cancer Coalition to -
disease.	Each	year	around	13,000	people	are	told	they	
                                                                                                                                                                                                                  5. Slattery ML, Energy Balance and Colon Cancer - beyond Physical Activity.
                                                               •	 Bleeding	from	the	bottom	without	any	obvious	reason.
have	bowel	cancer,	split	almost	equally	across	men                                                                        1 raise awareness of the risk of bowel cancer - Australia’s                                Cancer Research 57, 75-80, January 1, 1997.
                                                                                                                                                                                                                       Australian Institute of Health and Welfare 2008. Indicators for chronic
and	women.                                                     •	 Abdominal	pain,	especially	if	severe.                       second biggest cancer killer;
                                                                                                                                                                                                                       diseases and their determinants 2008. Cat. no. PHE 75. Canberra: AIHW.

Around	1	in	12	people	will	develop	bowel	cancer	at	            •	 Unexplained	weight	loss.                                2 reduce the number of people affected by bowel cancer;                                 6. Bishop J, Glass P, Tracey E, Hardy M, Warner K, Makino K, Gordois A,
                                                                                                                                                                                                                     Wilson J, Guarnieri C, Feng J, Sartori L, Health Economics Review of Bowel
some	point	in	their	life.	10                                   Remember that most of these symptoms will not be                                                                                                      Cancer Screening in Australia, Cancer Institute NSW, August 2008.
                                                                                                                          3 improve the lives of patients with bowel cancer;
                                                                                                                                                                                                                  7. Australian Institute of Health & Welfare & Australian Government
What	causes	bowel	cancer?                                      cancer. If you have one or more of these symptoms                                                                                                     Department of Health & Ageing 2008. National Bowel Cancer Screening
                                                                                                                             e
                                                                                                                          4	 	 nsure	there	is	sufficient	policy	emphasis	on	bowel	
                                                               you should go and see your GP.                                                                                                                        Program monitoring report 2008, Cancer Series 44, Cat. no. 40. Canberra:
   E
•	 	 xperts	do	not	know	precisely	what	causes	most	bowel	                                                                     cancer prevention as well as support for people                                        AIHW.
   cancers, and in many cases there are no obvious causes.     Treatment	for	bowel	cancer                                     diagnosed with the disease; and                                                     8. Winawer SJ. New colorectal cancer screening guidelines: a consensus for
                                                                                                                                                                                                                     action. British Medical Journal 2003;327(3):126-7.
•	 	 iet,	lifestyle	and	family	history	are	the	three	things	
   D                                                           Surgery is usually the first form of treatment to remove   5 advocate Government investment in R&D and clinical                                    9. ‘Waiting times for cancer: progress, lessons learned and next steps’, NHS,
                                                                                                                                                                                                                     October 2006.
   most likely to affect a person’s chances of developing      the tumour, and then patients may receive chemotherapy         trials to be in line with bowel cancer’s relative burden
                                                                                                                                                                                                                  10. Australian Institute of Health & Welfare & Australian Government
   bowel cancer.                                               or radiotherapy. There are a number of new drugs now           of disease.                                                                             Department of Health & Ageing 2008. National Bowel Cancer Screening
                                                               available and many others being trialled.                                                                                                              Program monitoring report 2008, Cancer Series 44, Cat. no. 40. Canberra:
   T
•	 	 he	risk	of	bowel	cancer	increases	with	age	but	it	does	                                                                                                                                                          AIHW.
                                                                                                                          Founding Coalition Members include: -
   affect younger people..

How	can	you	improve	your	lifestyle	to	reduce	your	risk	
                                                                                                                          	        Bowel Cancer Australia                               www.bowelcanceraustralia.org
of	developing	bowel	cancer?                                                                                                          Awareness, Education, Support & Medical Research




   E
•	 	 at	a	healthy	diet.	This	means	eating	lots	of	fruit,	
   vegetables, wholegrain foods and fish, and less                                                                        	 	                                                           www.nationalbowelscan.org.au

   fat, red and processed meat.

•	 Exercise	regularly	and	try	to	maintain	a	healthy	weight.                                                               	 	                                                           www.cancervoicesaustralia.org.au

•	 Quit	smoking.

•	 Reduce	alcohol	intake.                                                                                                 	 	                                                           www.letsbeatbowelcancer.com.au

   K
•	 	 now	your	body	and	how	it	functions	so	that	you	
   recognise changes in your bowel habits.
                                                                                                                          	 	                                                           www.getscreened.com.au



                                                                                                                          	 	                                                           Scott	Gillon,	Patient




                                                                                                                                                                                                                                                           www.bowelcancercoalition.org
The National Bowel Cancer Coalition


       www.bowelcancercoalition.org

				
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