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Ponte di Legno Working Group: statement on the right of children with leukemia to have full access to essential treatment and report on the Sixth International Childhood Acute Lymphoblastic Leukemia Workshop

Leukemia volume 18, pages 1043–1053 (2004)Cite this article

Abstract

The Sixth International Childhood ALL Workshop was made possible by unrestricted educational grants from Sanofi-Synethelabo Inc., Glaxosmithkline, Enzon Inc., and Ilex. Preparation of the Meeting Report was supported in part by the Österreichische Kinderkrebshilfe and private donations to the Children's Cancer Research Institute; the Associazione Italiana Ricerca sul Cancro, Fondazione Tettamanti, and Consiglio Nazionale Ricerche-Ministero Instruzione Universitá Ricerca); the Deutsche Krebshilfe, Bonn, and Madeleine Schickedanz Foundation, Fürth, Germany; Cancer Research UKJ; grants from the US National Institutes of Health (CA-21765, CA-51001, CA-31566, CA-78824, CA-29139, CA-37379, GM-61393, and GM61374), a Center of Excellence grant from the State of Tennessee, and the American Lebanese Syrian Associated Charities (ALSAC). C-H Pui is the American Cancer Society – FM Kirby Clinical Research Professor.

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Author information

Authors and Affiliations

  1. St Jude Children's Research Hospital, Memphis, TN, USA

    C-H Pui & W E Evans

  2. The University of Tennessee Health Science Center, Memphis, TN, USA

    C-H Pui & W E Evans

  3. Berlin–Frankfurt–Münster Study Group and Children's Hospital, Hannover Medical School, Hannover, Germany

    M Schrappe

  4. Associazione Italiana di Ematologia ed Oncologia Pediatrica and Centro Ricerca M Tettamanti, Clinica Pediatrica, Università Milano-Bicocca, Monza, Italy

    G Masera

  5. University of Chicago, Chicago, IL, USA

    J Nachman

  6. Children's Cancer Research Institute and St Anna Kinderspital, Vienna, Austria

    H Gadner

  7. UK Medical Research Council Childhood Leukaemia Working Party, Los Angeles, CA, USA

    O B Eden

  8. Children's Hospital of Los Angeles, Los Angeles, CA, USA

    P Gaynon

Authors
  1. C-H Pui
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  2. M Schrappe
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  3. G Masera
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  4. J Nachman
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  5. H Gadner
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  6. O B Eden
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  7. W E Evans
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  8. P Gaynon
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Corresponding author

Correspondence to C-H Pui.

Additional information

Participating groups/institutions (participants): Associazione Italiana di Ematologia ed Oncologia Pediatrica (M Aricò, G Basso, A Biondi, V Conter, G Masera, G Tognoni, MG Valsecchi), Berlin–Frankfurt–Münster Group (G Cario, H Gadner, O Hass, J Harbott, R Panzer, H Riehm, M Schrappe, A Stackelberg, M Stanulla, M Zimmermann), Children's Oncology Group (B Camitta, W Carroll, P Gaynon, S Hunger, J Nachman, K Schultz, N Winick), Cooperative Acute Lymphoblastic Leukemia Study Group (M Horstmann, G Janka-Schaub), Czech Pediatric Hematology (J Stary, J Trka), Dana-Farber Cancer Institute (S Sallan, L Silverman), Dutch Childhood Oncology Group (R Pieters, A Veerman), European Organization for Research and Treatment of Cancer – Childhood Leukemia Cooperative Group (Y Bertrand, S Suciu), French Acute Lymphoblastic Leukemia Study Group (G Leverger), Japan Association of Childhood Leukemia Study (K Horibe), Medical Research Council, United Kingdom Acute Lymphoblastic Leukemia (OB Eden, C Harrison), Nordic Society of Pediatric Haematology and Oncology (E Forestier, K Schmiegelow, K Vettenranta), St Jude Children's Research Hospital (D Campana, E Coustan-Smith, WE Evans, R Handgretinger, C-H Pui, MV Relling), Taiwan Pediatric Oncology Group (D-C Liang), Tokyo Children's Cancer Study Group (A Manabe, M Tsuchida); guest: D Pinkel

Appendix A:

Appendix A:

Position paper/statement by members of the Ponte di Legno group on the right of children with leukemia to have full access to essential treatment for acute lymphoblastic leukemia

Improved outcome of childhood ALL, the most common cancer in children, is one of the greatest successes in modern medicine. The approach taken to improve dramatically the cure rate involved the combination of clinical and basic research, mostly conducted with public funds, and intensive collaboration of cooperative groups. As a result, the cure rate has improved from 3% in the 1960s to 75–80% currently in developed countries. We believe that this improved possibility of survival should be considered among a fundamental right of affected children. Providing access to the necessary diagnostic and therapeutic resources to children afflicted with leukemia should be a priority for those who play a role in the relevant areas of medicine and health.

The physicians, clinical investigators, and basic scientists who have signed this statement have been responsible for transforming ALL into a model disease for which there is hope of cure when optimal treatment is accessible. These professionals are fully aware that their successes have also widened the gap of inequality between children living in the resource-rich countries and those living in low-income countries (LICs). Most children live in LICs; hence, most patients with ALL reside in these countries and are subjected to an increased risk of possibly avoidable death.

As citizens, doctors, and researchers, we feel an urgent priority to correct this inequality in ALL treatment. The following is a summary of short- and medium-term plans in this regard:

The first and most rapidly achievable goal is the recognition by international agencies and by concerned regulatory authorities that the treatment protocols and guidelines developed for children with ALL are essential. In this regard, antileukemic drugs used in these protocols should be qualified as essential.

Certain centers or groups of excellence should be developed in LICs. Our experience in various LICs has shown that the efficacy and safety of chemotherapy can be ensured in centers and by groups who are trained and motivated to adopt policies of high-quality ALL care, which include the use of well-designed protocols.

On the basis of concepts and strategies developed for use in other disease areas (from tuberculosis to AIDS), we recommend broadening the scope of the ‘essential drugs list’ and documenting not only the selection and use of drugs but also the implementation of the treatment strategy.

In this framework in which the fundamental rights of children are the reference value, we commit our groups to support strongly all activities toward this goal; we request the recognition by WHO and other concerned national and international agencies that the care of children with ALL (as well as other curable cancers) is essential; we advocate a price policy for drugs used in the protocols; the purpose of the policy will be to diminish substantially the treatment barrier of high drug costs; we recommend that the national authorities support the centers where the staffs are committed to ‘essential protocols’ and that national authorities document compliance with these protocols.

We are aware that the resource allocation for ALL does not currently coincide with public health priority. However, we are convinced – and supported by our experiences – that ALL is a model of all curable cancers; expanding efforts in treatment of ALL in LICs will result in the mobilization of important new energies, stimulation of imaginative solutions, enrichment of motivations, and broadening of public awareness. We emphasize that a policy of drastic cost-cutting in ALL treatment is feasible for two main reasons (besides and beyond any ethical consideration): (1) the market implications are minimal, because the size of the patient population is relatively small; and (2) there will be no risk of misdirection or mismanagement of drugs as they become available, because their use will be accounted for by the centers who are committed to documenting compliance through registration of all patients enrolled on treatment protocols.

All subscribers to this memorandum, representing the majority of the Childhood Leukemia Treatment Consortia, herewith emphasize the right of all children in the world to full access to the essential treatment of ALL and other cancers, and call upon all authorities concerned to recognize and support all measures that promote this right to a chance of cure.

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Pui, CH., Schrappe, M., Masera, G. et al. Ponte di Legno Working Group: statement on the right of children with leukemia to have full access to essential treatment and report on the Sixth International Childhood Acute Lymphoblastic Leukemia Workshop. Leukemia 18, 1043–1053 (2004). https://doi.org/10.1038/sj.leu.2403365

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