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The Baveno CML Declaration

published on: 28-06-2008

Purpose of the Declaration

The global community of CML patient advocacy groups is concerned about the growing inequality of access to first and second generation TKIs and other experimental therapeutic options in all countries and regions.

We believe that all patients should be treated equally regardless of race, nationality, faith, age, sex or economic status.

We are unhappy with the differences that exist in the way in which CML patients are monitored and treated and with healthcare systems that delay access to new treatments.

This document is a consensus Declaration from CML patient advocacy groups assembled at Baveno, Italy on Sunday 29th June 2008. By identifying a set of basic standards we call upon clinicians and health care practitioners, hospital administrators, health care providers, pharmaceutical companies and politicians to adopt and build upon these standards for the benefit of the CML patients that they serve.

The global community of CML patient advocacy groups will monitor the implementation of this declaration and publicise the healthcare systems that demonstrate adherence to it.

Background: PH+ CML

Philadelphia Chromosome positive Chronic Myeloid Leukaemia (CML) is a haematological malignancy or cancer of the blood cells affecting the granulocyte series of cells in the marrow.

It has an incidence of 1-2 cases per 100,000 in adult populations and accounts for 15-20% of all Leukaemias. It occurs in both children and adults, but is rare in persons aged 19 or younger.

In 1960 CML was associated with an abnormal chromosome and was the first cancer to be identified to have a genetic abnormality as the underlying cause of disease. This is known as the ‘Philadelphia Chromosome’ named after the city where it was discovered

Introduction: Molecular targeted therapy - a Revolution

Before the introduction of imatinib, therapeutic options included stem cell transplantation, interferon alpha or chemotherapy with hydroxyurea or busulphan. Life expectancy was 3-5 years.

During the early part of the 21st century therapy for Ph+CML was revolutionised by the introduction of a class of drug called a tyrosine kinase inhibitor or TKI. TKIs like imatinib, dasatinib and nilotinib, the prognosis of CML has vastly improved. Data from the IRIS trial shows that 95% of patients experience sustained progression free survival (PFS) of more than 6 years and counting.

Data from the IRIS study substantiates imatinib as first line therapy for all newly diagnosed Ph+CML patients. This data also shows that achieving a CCR within 12 months of starting therapy, translates into ongoing improvements in rates of PFS.

However, a small percentage of patients treated with imatinib develop resistance or intolerance to the drug. This requires intervention with 2nd generation TKIs like dasatinib and nilotinib or, if appropriate, a stem cell transplant.

The Baveno Declaration

We, as representatives of the Global Community of CML Patient Advocacy Groups, do collectively call upon all those responsible for the treatment and care of CML patients to:

1. Work together towards the ultimate goal: finding a non-invasive cure for CML

2. Adhere to internationally agreed treatment guidelines to ensure that patients are treated in accordance with current international ‘up to date’ evidence compiled by ELN (European LeukemiaNet) and NCCN (National Comprehensive Cancer Network).

3. Ensure that patients are diagnosed promptly and accurately and are made fully aware of all clinically appropriate options.

4. Ensure equality by providing patients with optimal treatment and care regardless of race, gender, age, nationality, faith, economic status or their national or international place of residence.

5. Provide patients with the information and resources that they need to gain access to, and treatment from, clinicians specialised in the management of CML.

6. Ensure that all patients receive treatment and care in centres of excellence, preferably delivered by multidisciplinary teams. Centres and individual clinicians should participate in trials organised by international CML networks and ensure that patients gain access to the best therapy currently available.

7. Provide access to internationally standardised cytogenetic and molecular monitoring, expert pathology and mutation analysis services so that doctors and patients can make informed clinical decisions. Pharmacokinetic testing of plasma trough levels should be offered in cases of a sub-optimal response or an intolerable side effect profile.

8. Allow patients access to their health records and all laboratory results at each step along their treatment pathway regardless of any national constraints.

9. In an attempt to minimise distress caused by delay or misunderstanding of test results, educate patients so that they are better able to appreciate the interpretation of FISH, cytogenetic and PCR (Polymerase Chain Reaction) tests.

10. Facilitate access to an expert second opinion should the patient request it.

11. Provide patient advocacy groups with participation in the decision making process of research and access to treatment.

12. Provide patients with information about all relevant ongoing clinical trials and publications of trial data and support patient participation in trials across borders.

13. Ensure patients in need are provided with psycho-social support and therapy.

14. Provide access to adequate funding of current therapies so that patients do not suffer a failure to treat on economic grounds. Actions must include appropriate reimbursement of approved therapies and treatment access programmes until full reimbursement is in place.


61 have signed this petition/declaration.

Pages: 1 2 3 4 »
Abd Razak MUHAMAD (Max Family , Malaysia); Anita WALDMANN (Leukaemiehilfe RHEIN-MAIN e.V. , Germany); Ann NILSEN (CML Support UK, United Kingdom); Bahija GOUIMI (AGIR, Morocco); Bob OSBORN (CML SUFFERER, uk); Bridget ORR (CML Support UK, UK); Candy HEBERLEIN (Stiftung zur Förderung der Knochenmarktransplantation , Switzerland); Cheryl-Anne SIMONEAU (The CML Society of Canada , Canada); David RYNER (CML Support Group UK, UK); Dinara SADRTDINOVA (Sodeistvie , Russia); Felice BOMBACI (Group AIL CML Patients, Italy); Gürsel BADAKAL (CML, Turkey); Giora SHARF (Israeli CML Patients Organization, Israel); Greg STEPHENS (Carolyn\'s Hope); Hidehito TAMURA (Orange , Japan); Jaana LUOMANEN (The finnish cancer patient organisation , Finland); Jadranka SANTINI (Croatian Association for leukemia and lymphoma , Croatia); Jan GEISSLER (Leukämie-Online e.V., Germany); Jana PELOUCHOVA (Diagnoza CML , Czech Republic ); Jeton LIKA (Kosovo Association for supporting leukemia patients, Kosovo);

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