We firmly believe this fight can only be achieved by taking a holistic approach. Therefore, we are continuously expanding the scope of our activities beyond our engagement in science and research and beyond the registration of unrelated blood stem cell donors. One way we do this is by helping patients in resource-limited settings to find a matching donor within their family and enhancing their access to transplantation, and in cases where there is no suitable family donor, we support unrelated donor searches.
We believe it is crucial to remove both socio-economic and infrastructural barriers so that more patients are able to access potentially life-saving therapy. Consequently, we are always striving to find new ways to facilitate that – to save as many lives as possible.
Even for those patients who do get access to therapy and appropriate health care, this often results in heavy social and financial burdens on patients and their families. This is particularly the case in low- and middle-income countries. At DKMS, we are committed to alleviating this burden.
“For the second chance at life, we cross borders, collaborate globally and leave no stone unturned to help patients. Every patient with blood cancer or a life-threatening blood disease such as thalassemia or sickle cell disease deserves that chance. Thus, we have established several programs to improve the situation of such patients, particularly those living in resource-constrained regions of the world,” says Dr. Elke Neujahr, Global CEO DKMS.
Our activities to facilitate access to transplantation cover three main areas:
A program to lessen the financial barriers of transplantation: This program intends to facilitate access to transplantation by contributing to the costs of the blood stem cell transplantation for patients who would otherwise not receive treatment.
We closely cooperate with other non-profit organizations by contributing towards the cost of stem cell transplantation for patients who would otherwise not receive adequate treatment. Our collaboration partners have a proven track record of low-cost and high-quality transplantation. Further, patients and their relatives receive assistance in searching for other funding sources to cover the treatment and related costs. If required, the concerned NGOs may even waive any financial contribution from the families.
An example of our DKMS Patient Funding Program is in India, where it has been in place since 2018. During this time, we have been supporting the nonprofit organizations Cure2Children and Sankalp India Foundation. These organizations seek to facilitate access, for children in low-income countries, to affordable and reliable local medical treatment for life-threatening diseases of the hematopoietic system. Ultimately, their goal is to cure them. They are also particularly committed to ease the burden of thalassemia, carrying out stem cell transplants on a non-profit basis in two centers in India since 2015. In collaboration with Cure2Children and Sankalp, we have contributed to the treatment costs of over 540 sick children in India alone. Moreover, the commitment extends beyond the country’s borders: 45 children in Pakistan have also received a stem cell transplantation and with that a second chance at life!
Please contact Access to Transplantation.
Our DKMS Patient Funding Program also supports patients who have found a matching donor within the DKMS donor pool. We offer financial assistance to patients who cannot afford the costs associated with the procurement of the stem cells from an unrelated donor or the transportation of the blood stem cells to the transplant center.
Please contact Transplant Center Services.
A program to identify family donors by carrying HLA typing costs for patients in need of a transplant and their family members. We also support unrelated donor searches for patients who do not find a suitable family donor.
Within our Free HLA Typing Program we are working in close collaboration with transplant centers and other non-profit organizations that pursue the same life-saving cause as us in countries with limited resources by covering HLA typing costs involved in identifying family donors.
An example of such assistance is the so-called “thalassemia camps” in India. More than 10,000 children are born with this condition every year in India alone, resulting in an extremely high need for transplants. DKMS cooperates with local NGOs and transplantation clinics that organize events where pediatric thalassemia patients and their siblings provide buccal swab samples for HLA typing. DKMS covers the costs of the typing. The samples from the camps, which many families travel a significant distance to reach, are analyzed in our high-throughput laboratory, the DKMS Life Science Lab in Dresden, and clinical matching reports are provided. In cases where there is no matching sibling for a sick child, there still remains some hope that an unrelated donor might be a match or that a haploidentical transplantation (half-matched related donor such as a parent) is a feasible alternative. A publication about the scope and impact of the program is available in the Pediatric Hematology Oncology Journal.
So far, our laboratory has typed over 50,100 samples under the DKMS Free HLA Typing Program. We were able to identify over 3,700 potential family donors and more than 1,500 children were given a second chance at life.
Please contact Access to Transplantation.
Our program to advance treatment and care through infrastructural support and knowledge sharing: This program focuses on making a sustainable contribution toward the enhancement of high-quality and affordable hematopoietic stem cell transplantation. This comprises funding for non-profit hospitals and organizations in countries with a shortage of resources, to help them deliver appropriate treatment as well as training for physicians and nurses to advance the level of care.
Such engagement in terms of enhancing capacities at hospitals is demonstrated by our collaboration with the non-profit organization Sankalp India Foundation. Currently, Sankalp carries out blood stem cell transplants at two centers in India, Ahmedabad and Bangalore. The center in Ahmedabad has a capacity of four beds. In September 2021, the organization launched the BMJH-Sankalp Bone Marrow Transplant Unit in memory of Mechtild Harf in Bangalore with a capacity of ten beds, enabling up to 120 transplants per year in this unit, the majority of them for Thalassemia patients. We have supported this project to increase the capacity for low-cost and high-quality transplantation, to help those who cannot otherwise afford treatment. As part of our DKMS Patient Funding Program we also contribute to the transplantation costs.
Please contact Access to Transplantation.
In addition, we regularly invite members of the medical community to symposia to discuss best-practice examples and to foster the exchange of expertise, an important benefit when it comes to providing patients with the best possible care. This also allows us to keep healthcare professionals up to date about recent developments, processes and services of DKMS, including the support programs that we offer to transplant center coordinators, search units and registries.
Please contact Transplant Center Services.
DKMS is also involved in training healthcare professionals, specifically by supporting the “EBMT Middle-income Countries Pediatric Advanced Care Training (EMPACT) 2021–2022.” The training provided pediatric blood and marrow transplantation training for nurses and physicians from middle-income regions.
The pilot educational program was financed by DKMS, organized by Cure2Children, and endorsed by the Outreach Subcommittee of the Paediatric Diseases Working Party - EBMT. The program consisted of:
A two-year haematopoietic cell transplantation training course for nurses from Middle-Income Countries (MICS) with the aim to ensure the acquisition of Advanced Practice Providers (APP) hematopoietic cell transplantation (HCT) core competencies as defined by FACT/JACIE standards 7th edition.
A six-month hematopoietic cell transplantation fellowship for paediatricians from Middle-Income Countries (MICs) with the aim to provide intensive hands-on exposure to paediatric HCT in a MIC setting. The case mix primarily consisted of hemoglobinopathies and other non-malignant conditions.
Last updated: 30.12.2024