Myelom-Gruppe Rhein-Main



Multiple Myeloma Manifesto

Silent No More: A Call to Action on Behalf of People Living with Multiple Myeloma



At any one time, there are more than 77,000 people in Europe undergoing treatment for multiple myeloma, the most common bone marrow cancer.1 The incidence of this blood-borne cancer is increasing.2, 3 Yet knowledge of myeloma remains at low levels among the European public.

Whilst the average age of onset of the disease is the early 60s, today 5-10% of all myeloma patients are under the age of 40.4 Today only about 35% of people in Europe living with myeloma are alive five years after diagnosis.5, 6 Yet increased investment by the public and private sectors in basic and clinical research has led to significant advances in early detection and treatment of some cancers. For example, at least 88% of women with breast cancer expect to live five years after diagnosis and often much longer.7

We therefore call on the European Commission, national governments, medical societies, patient groups, the media, and the pharmaceutical and biotechnology industries to take action to address the six key needs of people living with multiple myeloma.

Today we require:

  1. Equity in biomedical and clinical research.

    Today no test can detect myeloma before it spreads resulting in diagnosis at a more advanced stage of the disease. In addition, people currently living with the disease have few treatment options.4, 8 Myeloma must be a priority for research in the years ahead. People with myeloma must have information about, and access to, participation in clinical trials. No one living with myeloma or any other rare cancer should be denied the benefit of ongoing scientific progress.

  2. Multidisciplinary care from trained professionals.

    The needs of people living with myeloma and their families are best met by a multidisciplinary team of clinicians – including nurses and mental health professionals – having specialized knowledge and extensive experience in treating these diseases. Patients should be treated with respect, have complete and easy access to their medical information, and be viewed as partners in the decision-making process by members of the healthcare team.

  3. Increased information and support services.

    Currently, dedicated myeloma patient organisations exist in ten of the 25 countries in the European Union.9 Accurate, easily understood information about myeloma and its diagnosis and treatment is needed for every patient and his or her family. Patient support services must be available and accessible to all who choose them. Advocacy organisations must provide resources to empower patients to take an active role in their own care, as well as represent their interests to the medical, scientific, and policy-making communities.

  4. Access to optimal treatment.

    Every patient, regardless of location, age, income, or any other factor, deserves the best treatment available for his or her stage of disease. National health agencies must adopt life saving treatments as they become available thereby addressing, at least in part, the issues of access and affordability.

  5. Policies that put patients and their needs at the centre of treatment and care.

    Policy makers must make myeloma patients’ needs the first priority. Myeloma patients must be allowed to take an active role in policy decisions that affect them, particularly those relating to provision of care and access to new and innovative treatments.

  6. Reduction in the isolation that characterises the lives of people living with myeloma and other rare cancers.

    The psychosocial stress known to all cancer patients is felt more acutely by myeloma patients who face greater difficulties in finding peer support and dedicated resources and information about this rare cancer.10, 11 Dedicated outreach by healthcare institutions and other cancer-related organizations should be made available to lessen these feelings.

By creating increased awareness of myeloma today, we call for speedier progress in the search for accurate diagnostic tools, access to new drugs, development of more treatment options, and an increase in psychosocial support. No patient living with a rare cancer like multiple myeloma should be left behind in the race for cancer cures.

Signed by:



Myeloma Euronet Myeloma Euronet – European network of myeloma patient groups

 

 

European Group for Blood and Marrow TransplantationEuropean Group for Blood and Marrow Transplantation (EBMT)

 

 

European Myeloma Network European Myeloma Network (EMN)

 

 

Lymphoma Coalition Lymphoma Coalition

 

 

References

1. International Agency for Research on Cancer. CancerMondial GLOBOCAN 2002 Database. Available at: http://www-dep.iarc.fr/. Accessed May 31, 2006.

2. Phekoo KJ, Schey SA, Richards MA, Bevan DH, Bell S, Gillett D, Møller H. A population study to define the incidence and survival of multiple myeloma in a National Health Service Region in UK. British Journal of Haematology, 2004; 127(3):299-304.

3. National Institutes of Health Osteoporosis and Related Bone Diseases National Resource Center. Myeloma Bone Disease Fact Sheet. Available at: http://www.osteo.org/newfile.asp?doc=r605i&doctitle=
Myeloma+Bone+Disease&doctype=HTML+Fact+Sheet
. Accessed May 31, 2006.

4. Durie BGM. Multiple Myeloma Patient Handbook. 2006 ed. North Hollywood, Ca: International Myeloma Foundation, 2006.

5. Griepp PR, San Miguel J, Durie BGM, Crowley JJ, Barlogie B, Bladé J, Boccadoro M, Child JA, Avet-Loiseau H, Kyle RA, Lahuerta JJ, Ludwig H, Morgan G, Powles R, Shimizu K, Shustik C, Sonneveld P, Tosi P, Turesson I, Westin J. International Staging System for Multiple Myeloma. Journal of Clinical Oncology, 2005; 23(15):3412-3420.

6. Coleman MP, Gatta G, Verdecchia A, Estève J, Sant M, Storm H, Allemani C, Ciccolallo L, Santaquilani M, Berrino F, and the EUROCARE Working Group. EUROCARE-3 summary: cancer survival in Europe at the end of the 20th century. Annals of Oncology, 2003; 14(5):v128–v149.

7. American Cancer Society. Breast Cancer Facts and Figures 2005-2006. Atlanta, GA: American Cancer Society, Inc., 2005.

8. Durie, BGM. Multiple Myeloma, Cancer of the Bone Marrow: Concise Review of the Disease and Treatment Options, 2006 ed. North Hollywood, Ca: International Myeloma Foundation, 2006.

9. Myeloma Euronet, European Network of Myeloma Patient Groups. Geographical Overview. Available at: http://www.myeloma-euronet.org/en/members/geographical-overview.php. Accessed May 31, 2006.

10. Santos FR, Kozasa EH, Chauffaille Mde L, Colleoni GW, Leite JR. Psychosocial adaptation and quality of life among Brazilian patients with different hematological malignancies. Journal of Psychosomatic Research, 2006; 60(5):505-511.

11. Courtens AM, Stevens F C, Crebolder H F, Philipsen H. Longitudinal study on quality of life and social support in cancer patients. Cancer Nursing, 1996; 19(3):162-169.

 

 



 
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