Creation of All-Party Parliamentary Groups on Breast Cancer

Belgian Senate, Brussels, 18 October 2006

Given EUROPA DONNA’s mission to represent the concerns and interests of European women to local and national authorities and governments, the Coalition actively encourages the establishment of all-party groups on breast cancer at national levels across Europe. It has now held three all-party group meetings, the most recent of which took place in the Belgian Senate in October 2006. All-party group meetings, which bring together existing all-party groups, national MPs and ED advocates, have proved successful in spurring the creation of new groups so that the interests of women with breast cancer are considered in national policy and legislation.

At the first all-party group meeting in the UK in 2000, MPs from Belgium, Estonia, Ireland, Italy and Slovenia and ED advocates, learned about the existing UK all-party group and its activities. An Italian group was formed as a result. A second meeting in 2002, brought MPs from Croatia, France, Germany and Spain to the senate in Rome to meet the newly formed Italian group. In the last two years, Belgium, Portugal and Latvia have followed suit, bringing the current total of all-party groups to five.

With the success of the meetings in cascading results to other countries, the recent third meeting was then called in the Belgian Senate, where representatives of the five existing groups and MPs or their representatives from Cyprus, Hungary and Sweden and ED advocates shared their experiences. Senator François Roelants du Vivier and Magda de Meyer, MP, of the Belgian Interparliamentary Group on Breast Cancer, hosted the meeting. Sen. Roelants du Vivier, Ms de Meyer, who also moderated the meeting, and Birgit Carly, Board Member of ED Belgium, presented the history of their group and what it has managed to achieve.

The Belgian experience

After determined lobbying efforts by ED Belgium, the Belgian Interparliamentary  Group on Breast Cancer was formed in October 2005. Beginning with the all-party meeting in the UK in 2000, ED Belgium began to actively pursue political contacts, including meetings with the Minister for Health in 2001 that led to the implementation of a national screening programme. In order to overcome some political hurdles along the way, they hosted an award ceremony for contributions to breast cancer. The Belgian MP Magda de Meyer then proposed the creation of a Belgian parliamentary resolution based on the European Parliament Resolution on Breast Cancer. From this, Sen. Roelants du Vivier tabled a bill to establish standards for breast clinics, which has since been proposed as a Royal Decree. If passed, this would mean the inclusion of the European guidelines in Belgian legislation for breast units.

The Belgian Interparliamentary Group on Breast Cancer is one of the largest all-party groups in the Belgian Parliament with more than 60 member parliamentarians. It meets four times a year and its main objective is to work beyond political boundaries to co-ordinate initiatives taken by legislators in the area of breast cancer. Every year in Belgium almost 8,000 new cases of breast cancer are detected and 22 new cases are diagnosed every day.

Initiatives and aims

- In October 2005, with the help of ED Belgium and the Foundation Against Cancer, the interparliamentary group held a symposium on clinical research, screening, psycho-oncology and breast clinics in the Belgian Senate.

- The group recently succeeded in having Herceptin included in the national health reimbursement scheme.
 
- It is working to include the European guidelines in Belgian legislation for breast clinics.

- It aims to boost the rate of participation in mammography screening from the current 55% to the required 70% for a successful programme.

- It is working to expand current mammography screening age limits of 50-59 years to include younger and older women.

- It supports international initiatives in the area of breast cancer and encourages the sharing of information for the creation of further all-party groups.

The UK experience

The All-Party Parliamentary Group on Breast Cancer is one of the most active groups in the UK Parliament and continues to gain members. The group was established in 1996-1997, when Breakthrough Breast Cancer, a major UK charity, acted as its secretariat and organised some publicity events, such as a photo call during which 70 MPs wore pink ribbons. The all-party group’s stated objectives are to raise issues on breast cancer with government and other policy makers; to provide a forum for MPs and peers of all political parties to discuss breast cancer-related issues; and to take action on behalf of people with breast cancer. As well as organising occasional meetings with eminent speakers, the group publishes the Breast Cancer Bulletin and encourages its supporters to contribute to parliamentary debates and questions.

Initiatives and achievements of 2005-2006


- Much campaigning has been dedicated to improving access to medicine and treatments, such as Herceptin. The group has been influential in ensuring that all women diagnosed with breast cancer have the tumour tested for HER2, since if found positive, Herceptin treatment could be beneficial. A fast-track system has been established to assess whether potentially life-saving drugs should be made available on the National Health Service.

- The group continues to campaign to improve access to breast screening services and encourage women over 70 to make appointments for screening. This follows the  successful campaigns from 2004 to improve uptake of screening invitations and the extension of the screening programme to women up to the age of 70.

- The Breakthrough Patsy Calton Award has been established to honour former Joint Chair of the UK all-party group, Patsy Calton, who died from breast cancer in June 2005. It is an annual award in recognition of exceptional achievements by parliamentarians in campaigning for improvements in breast cancer research, services and the patient experience.

- The group promotes Breast Cancer Awareness Month to parliamentarians to ensure that breast cancer remains high on the political agenda.

- A Q&A session was held with the National Cancer Director, Prof. Mike Richards, where parliamentarians had the opportunity to ask questions about breast cancer on behalf of their constituents.

The Italian experience

Formed in 2001, EUROPA DONNA Parliament is a working group comprising the Italian Forum of ED and the Italian women MPs. Its aim is to maintain contact with institutional representatives, local health authorities, scientific directors, hospital administration, etc. Within Italy there is a wide variation between regions, cities and even hospitals in the breast care services women receive. Based on results of a survey, EUROPA DONNA Parliament pinpointed six main areas requiring attention:

1. Increased funds for research.
2. Increasing awareness of prevention through information campaigns.
3. Promotion of early diagnosis. The Ministry of Health passed a mammography screening law in 2000, but regions invest different resources in screening.
4. Continued improvement of treatment through investment in centres of excellence and greater co-ordination between the public and private health care sectors.
5. Increasing attention to quality of life and access to reconstruction and psychological support.
6. Improving access to the workplace for women with breast cancer. A decree passed in 2003 states that such women can apply for a reduction to part-time hours.

Five-year goals

- Promotion of a healthy lifestyle, e.g., breastfeeding
- Establishment of breast units according to the EU guidelines and the integration of all such units
- National Health Service coverage for reconstruction
- Access to sentinel node biopsy
- Evaluation of need to lower the age for screening
- Increase investment in research

The Portuguese experience

One of the newer groups, the Portuguese All-Party Parliamentary Group on Breast Cancer was formed in October 2005. With the collective effort between the parliamentarians and ED Portugal, the group has already made some achievements in the areas of prevention, awareness and legislation.

Activities and achievements

- The number of patients with access to free mammography and ultrasound diagnosis services has been enlarged. Efforts are now focused on areas of the population without access to this service. This has been achieved through a series of agreements signed by the government (Regional Health Administration), and also through the use of local mobile units in mostly rural areas, where access to medical care is still insufficient.

- In accordance with the National Education Commission, secondary education biology syllabuses now include references to cancer, including information on the various mutations that may originate the disease. The all-party group met with ED Portugal in July 2006 to make plans to introduce specific information on breast cancer physiology and treatment to the syllabus.

- Several years ago, the Portuguese government passed a law allowing people with disabilities significant benefits when acquiring a mortgage for their residence. However, since credit is conceded by banks, the government had poor control over the discrimination that could occur. Banks usually demand that women with breast cancer have life insurance in order to securing the credit, something that is almost impossible to acquire. With the passing of a law (36/2006) in August 2006, this type of financial discrimination is now an offence, and the insurance companies are obliged to cover the risk despite any pre-existing illness.

The Latvian experience

The newest group, the Saeima Support Group for Prevention and Treatment of Breast Cancer was established in Latvia in December 2005. Through the joint efforts of parliamentarians, physicians and media representatives, it aims to ensure that women receive better and more accessible breast cancer prevention and treatment. In her presentation, Latvian MP Ingrida Circene noted that as cancer remains an uncomfortable subject for discussion in Latvia, the all-party group had only six members prior to the October elections. Nonetheless, the group has brought to light breast cancer issues in the parliament and has initiated discussions about a national cancer strategy.

In Latvia, the number of cases of breast cancer is on the rise. Of the cases reported, 30.1% are in the advanced stage (stages III and IV); in almost 82% of all cases this is due to a delayed consultation with a doctor. There are long waiting times to see a specialist due to the inadequate number of doctors. In 2005, health care spending was 3.38% of the GDP and about 5 euros per cancer patient, the lowest among EU countries. For a woman diagnosed with breast cancer in Latvia, her chance of recovery is 35% lower than that of a woman with the same diagnosis in Sweden.

Aims


- The group aims to bring effective cancer treatment in Latvia up to the level of other European countries.
- ED Latvia plans to investigate the problems for breast cancer patients in Latvia so as to identify areas for change.
- The group aims to remedy the lack of information available to women on prevention, diagnostic procedures and medications.
- It encourages women to take responsibility for having regular medical check-ups and to request a breast examination.
- It urges the government to more actively disseminate information about prevention programmes.
- The group has initiated discussion in the Latvian Parliament regarding the national oncology strategy.

Spreading the word to MPs


As the meeting aimed to motivate members of parliament to create all-party groups in countries where they are not yet in place, MPs or their representatives from three EU countries described the breast cancer situation in their countries. The MPs present included Stella Kyriakides, Past President of ED and a newly elected MP in Cyprus; Barbro Westerholm, a physician and MP in Sweden; and Zsuzsanna Dér, MP in Hungary.

Cyprus


Ms Kyriakides said that Cyprus is moving constructively toward forming an all-party group for breast cancer. ED Cyprus has had some very successful lobbying campaigns involving politicians and the government. Through its work with the Ministry of Health, a pilot mammography screening programme was established. Part of the parliamentary agenda will now be to question its adherence to the EU guidelines. ED Cyprus also pressured for the creation of a cancer registry. Another recent achievement was having treatment and diagnosis for all cancer patients made available at no cost to the patient, including Herceptin treatment. Other awareness events were held in parliament in October involving parliamentarians. However, there is as yet no legislation protecting breast cancer patients per se.

Sweden


With its 30 years of experience as one of the pioneers for mammography screening programmes, Sweden has witnessed an increase in the five-year survival rate from breast cancer from 63% in 1970 to about 80% in 2004. Screening is now recommended for women aged 40-75 years, although not all the counties have expanded their programme. An all-party group existed on screening in 1980 but was dissolved once screening was achieved. Ms Westerholm said that now a new one may be considered for breast cancer issues in general; 48% of parliamentarians in Sweden are women. There is a need for a national cancer plan that would:

1. Speed up the approval process for new medicines.
2. Investigate the different treatment approaches in various counties.
3. Further prevention strategies.
4. Address the shortage of specialists by offering education or training of medical students.
5. Establish end-of-life care, involving psychological support to the woman and her loved ones.
6. Set up rehabilitation programmes.

Hungary


While an all-party group has not yet been established in Hungary, the country has shown that it has political will with regard to breast cancer. A nationwide mammography screening programme targeting women aged 45-65 was established in 2001. A representative for Ms Dér said that emphasis is being placed on professional training for radiologists, mammographers, pathologists, cytologists, surgeons and oncologists. There are also awareness campaigns to make breast screening part of the “health culture”. In 2003, the National Public Health Programme was established based on a parliamentary decision. It is a ten-year public health strategy that has gained wide social consensus.

On a European level: EPGBC


The European Parliamentary Group on Breast Cancer is a prime example of ED advocates working with politicians to set policy and standards for breast care across the EU-25. MEP Karin Jöns, the EPGBC Chair and head of ED Germany, emphasised the need to implement the European Parliament Resolution on Breast Cancer in the enlarged European Union by 2016. The European guidelines need to be applied across the EU. European Structural Funds and Social Funds can be used to set up screening programmes and provide training for the multidisciplinary team.

Moving forward


ED is the common link between the all-party groups in each country. Its efforts to ensure that all groups have up-to-date information on breast cancer can help the groups make a difference. Politicians must be approached in each country, and particular pressure can be made during pre-election times. ED Executive Director Susan Knox said, "ED is ready and willing to set up a meeting next year in another country and hopes that one of the current groups or a new group will want to host such a meeting. In this way we can continue the dialogue among parliamentarians on breast cancer issues and encourage the formation of new national all-party parliamentary groups on breast cancer"