The Malaysian Breast Cancer Council and Advocacy in Malaysia
By Ms Ranjit Kaur, President Reach To Recovery International,
President of the MBCC, President of the Breast Cancer Welfare Association,
In many developing countries where the political climate seems mild, there are ways to deal with emancipation issues. Demonstrations, picketing and aggressive advocacy are considered radical and frowned upon in many of these countries. It has been realised that in such situations, it is essential to engage in regular dialogue with the authorities and to help support the authorities in enabling the public to receive accurate information regarding their rights as consumers and patients. Regular discussions with the relevant partners and authorities can create a conducive environment enabling a pathway for forums to improve the quality of life for those who are oppressed.
|Aim and Objectives|
The MBCC consists of reach to recovery groups (peer support groups of women with breast cancer), cancer societies, hospices, national societies of healthcare professionals in cancer care, and agencies with special interest in breast cancer and women’s issues. Whilst this approach was incorporated to utilise the expertise of professionals as resource persons, the reach to recovery groups in Malaysia are required to spearhead the related issues.
|MBCC was established to:|
Standardise systems and influence policies regarding breast cancer
Create a socio-cultural change regarding attitude towards breast cancer
Facilitate communication and break down barriers on breast cancer issues
Prevent duplication of services and activities
Maximise resources to help enable effective support services
The concept of the MBCC is to ensure that by working together, the various member organisations of this coalition will campaign for the improvement of breast cancer services. The aim of MBCC is to bring together related government agencies, NGOs, healthcare professionals and interested sectors to support and coordinate activities related to breast cancer on a nationwide basis.
The objectives are:
To ensure access to information, appropriate screening, early detection, treatment and support for all women.
To influence the relevant authorities in the development of legislation and policies regarding women at risk and women with breast cancer.
To encourage, support and engage in research and local studies on various aspects of breast cancer.
|Modus Operandi and Activities|
Whilst the nation is building its population to face the challenges of a steadily developing country, it is necessary to use the hard facts of science that have been produced through rigorous research and clinical trials at the global level before they are approved for use by the consumer. This will prevent the sale and distribution of products and services acquired from unproven methods which can take advantage of the vulnerability of the consumer.
Some information and issues raised and made known to the Malaysian authorities and the public are:
Availability of sources to seek information on access to cancer care and treatment
The importance of seeking evidence-based screening, diagnostic services and treatment
Equity of services in cancer treatment
Rising cost of cancer treatment drugs
Tobacco control issue
|Fact-finding, Discussions and Action|
The committee members of the MBCC engage in regular discussions through the email and at times at a face-to-face meeting to implement their role. One of the major challenges that the MBCC committee has faced is the rampant advertising by errant companies and NGOs of unproven methods of cancer screening, diagnosis and treatment. Regular discussions are conducted via email by members of the Council. Whenever the need arises, the members have face-to-face discussions and brainstorming before taking action. Action is taken by placing letters to the editor of the media by each member organisation of MBCC, taking up the issue with the relevant authorities such as the Ministry of Health and by placing information in the websites. Sending out messages to the public by placing statements by experts in the electronic and audio-visual media can be effective.
Some of the challenges that are being undertaken by MBCC include errant public advertising by companies, agencies, NGOs and individuals on:
Digital Infrared Thermal Imaging for breast cancer screening and diagnosis
Electric Impedance Tomography for cancer screening, particularly breast cancer
Tumour marker tests for cancer screening
Breast ultrasound scanning once a year instead of mammography
Phony method of screening advertised by beauty salons
Italian made bras only to be used by women after mastectomy
|Public Awareness in a Fun Style|
Messages on early detection of breast cancer are conducted by publishing brochures and by organising participatory social and fun events for the public. One such event included the Outrageously Pink Night (OPN) where member organisations of MBCC organised a street party for the patrons (mostly youngsters) of cafes and nightspots of an area which is always busy with social activities at night. The event was advertised in advance and everyone came out dressed outrageously in pink to participate in various fun events and competitions. The people took to the streets and were happily dancing and having fun. At the same time, the Minister of Women, Family & Community Development for Malaysia who was the Guest-of-Honour went around to the streets and cafes distributing goody-bags containing gifts and information on early detection of breast cancer to everyone.
On the 10th of August 2004 a total of 20 women living with breast cancer participated in a Patients’ Forum session in conjunction with a Health Aid Event organised by a corporate organisation. The Parliamentary Secretary from the Ministry of Health and several medical specialists were also present at the forum. Issues discussed included treatment needs of women with breast cancer, the escalating cost of chemotherapy drugs and the acute shortage of specialised cancer treatment services in Malaysia. These issues are currently being addressed by the Ministry of Health jointly with the committee members of MBCC.
|Summary and outcome |
MBCC raises issues with the Ministry of Health and other relevant sectors on the social implications of the diagnosis of cancer. Although the changes are slow, MBCC has achieved milestones, albeit minor in the advocacy advancement in Malaysia. MBCC has created public interest through websites such as www.radiologymalaysia.org and www.malaysiaoncology.org which are useful vehicles where public education is being conducted so that when there is increased public consciousness there will automatically be a demand for the health rights.
Breast cancer survivors and the healthcare professionals work in partnership in this advocacy endeavour. The advantages of this partnership are:
Improved doctor-patient communication and relationship. Regular feedback between women with breast cancer and healthcare professionals has helped the latter to improve their style of breaking the news to the patient and communicating with the patient in simple language
Women with breast cancer have used their personal cancer experience to effectively take the lead role in making the changes and in advocating for the rights of cancer patients not just in providing information to the public, but also in encouraging the healthcare professionals to modify the treatment environment and hospital waiting rooms so that they are more conducive and patient-friendly which helps in creating a healing mind set in the patient.
Awareness amongst healthcare professionals that they can help their patients to make informed decisions which is in its infancy stage as patients still rely heavily on doctors to make the treatment choice for them.
Reach to recovery groups have developed their support programmes to complement the medical treatment. Without interfering with the doctor-patient relationship, the support groups also help patients to communicate effectively with their healthcare professionals. With the introduction of reach to recovery training for volunteer survivors, the healthcare professionals are increasingly gaining confidence in these volunteers and are referring their patients to the volunteer survivors for psychosocial support.
The formation of this coalition have reduced communication barriers and the competitive edge amongst reach to recovery groups, cancer societies and societies of healthcare professionals in cancer care. Representatives of member organizations are able to sit around the same table to resolve differences and to realise that all sectors have similar aspirations and issues that need to be addressed with the authorities
The unity in the Council has created a newly acquired strength. The breast cancer survivors, healthcare professionals and women’s groups are able to work jointly to create an impact and initiate changes to improve the quality of persons affected by breast cancer in particular and cancer in general.
MBCC began to take on the role of the “watchdog” for articles published in the media to help the Ministry of Health to observe, regulate and enable the Malaysian public to receive accurate published information and education on scientifically proven methods of prevention, screening, treatment, recovery and lifestyle strategies in relation to cancer and related health issues. The media used for imparting such information and education could include the newspapers, journals, magazines, brochures, posters, the internet, television and radio.
Curb False Advertising for Cancer Detection
“The rampant advertising and reporting of scientifically unproven methods of screening, diagnosis and treatment to the public accompanied by wrong information and false promises of accurate detection of cancers is a blatant crime."
Get the full text of Ms Ranjit Kaur’s speech at the Novartis-MBCC Breast Cancer Leadership Award Presentation 2005.
The Inaugural Novartis-MBCC Breast Cancer Leadership Award 2005 – 5 Dec 2005
Leadership award 2005 was to encourage and applaud advocacy efforts in breast cancer. Dr Evelyn Ho received a trophy of excellence and the Malaysian Breast Cancer Council (MBCC) received RM 10,000 from Novartis. Four individuals were acknowledged for outstanding contributions in the fight against breast cancer.
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