Background
Stem cell transplantations (SCTs) in India have increased exponentially, which has improved survival in hematologic cancers, and allogeneic transplants have improved survival in transplant-treatable disorders. Greater progress in providing SCTs has occurred in metropolitan areas because insurance coverage and financial resources are more readily available there than in rural areas. In India, there are still many underserved areas where per capita income is US$800 to US$1100 per year. In those areas, the stigma and fear of transmission of cancers and hematologic disorders add to the many challenges in providing SCTs for all who need them. In addition, HLA matching and blood typing face financial challenges. Sri Aurobindo Medical College and Postgraduate Institute (SAIMS) in Indore is located in one such area, covering 22 districts of Madhya Pradesh. It has a hematology specialty department and a postgraduate residential program in hemato-oncology. The Teenage and Young Adult Cancer Foundation (TYAcan) is a nonprofit organization working in the same region.
A 28-year-old allogeneic transplant recipient being honored by government authorities.
A 28-year-old allogeneic transplant recipient being honored by government authorities.
Cost matrix of support for transplantation
| Patient | Age (y) | Type of transplant | Cost, US$ | Funding source and amount (US$) | Patient outcome |
|---|---|---|---|---|---|
| 1 | 34 | Autologous | 2 800 | NGO, 1500; self, 1300 | Relapse after 3 years |
| 2 | 14 | Allogeneic | 7 600 | NGO, 5600; government, 2000 | Completed 4 years of independence from transfusion; partial chimerism |
| 3 | 17 | Autologous | 3 000 | NGO, 2000; self, 1000 | Continued to be in remission |
| 4 | 17 | Autologous | 4 000 | NGO, 2000; self, 2000 | In remission |
| 5 | 5 | Autologous | 1 100 | NGO | Died 8 months after transplant |
| 6 | 18 | Autologous | 3 000 | NGO, 1000; government, 1000; self, 1000 | In remission |
| 7 | 29 | Haploidentical | 15 000 | NGO, 8000; government, 2000; self, 5000 | In remission |
| 8 | 56 | Autologous | 10 000 | Government, 1000; self, 9000 | In remission |
| 9 | 18 | Autologous | 3 570 | NGO, 1000; self, 2570 | In remission |
| Patient | Age (y) | Type of transplant | Cost, US$ | Funding source and amount (US$) | Patient outcome |
|---|---|---|---|---|---|
| 1 | 34 | Autologous | 2 800 | NGO, 1500; self, 1300 | Relapse after 3 years |
| 2 | 14 | Allogeneic | 7 600 | NGO, 5600; government, 2000 | Completed 4 years of independence from transfusion; partial chimerism |
| 3 | 17 | Autologous | 3 000 | NGO, 2000; self, 1000 | Continued to be in remission |
| 4 | 17 | Autologous | 4 000 | NGO, 2000; self, 2000 | In remission |
| 5 | 5 | Autologous | 1 100 | NGO | Died 8 months after transplant |
| 6 | 18 | Autologous | 3 000 | NGO, 1000; government, 1000; self, 1000 | In remission |
| 7 | 29 | Haploidentical | 15 000 | NGO, 8000; government, 2000; self, 5000 | In remission |
| 8 | 56 | Autologous | 10 000 | Government, 1000; self, 9000 | In remission |
| 9 | 18 | Autologous | 3 570 | NGO, 1000; self, 2570 | In remission |
NGO, nongovernmental organization.
Diagnosis and outcome for SAIMS patients between 2014 and 2019
| Diagnosis | Total No. of patients | Outcome | ||
|---|---|---|---|---|
| No. of patients treated | % | Status | ||
| Acute myeloid leukemia | 50 | 14 | 28 | CCR |
| Acute lymphoblastic leukemia | 75 | 52 | 69 | CCR |
| Severe aplastic anemia | 15 | 6 | 40 | Alive |
| Sickle cell disease | 80 | 20 | 25 | Received exchange transfusion |
| Lymphoma | 27 | 19 | 70 | CCR |
| Diagnosis | Total No. of patients | Outcome | ||
|---|---|---|---|---|
| No. of patients treated | % | Status | ||
| Acute myeloid leukemia | 50 | 14 | 28 | CCR |
| Acute lymphoblastic leukemia | 75 | 52 | 69 | CCR |
| Severe aplastic anemia | 15 | 6 | 40 | Alive |
| Sickle cell disease | 80 | 20 | 25 | Received exchange transfusion |
| Lymphoma | 27 | 19 | 70 | CCR |
CCR, continuous complete remission.
Objectives
One of the most important objectives is building capacity in western Madhya Pradesh to provide affordable and effective SCTs for children and young adults with aplastic anemia, relapsed leukemia, and thalassemia.
Methods
The first step is to perform financial and social screening of patients and donors. This is managed by the Stem Cell Transplant Unit of the Department of Medical Oncology, SAIMS. The TYAcan Foundation provides multifaceted support, including financial help, advocacy, counseling, dietary support, donation of blood components on short notice, and accommodations in local hostels. It also provided salaries for nurses (through grants) and secured their services.
Capacity building
Two clinicians (doctorate of medicine medical oncology students) were trained at the Department of Haematology, Tata Memorial Centre, Mumbai, to enable them to treat at least 25 patients who have acute leukemia every year, and they gained experience in providing care for patients with neutropenia. In 2018, the visiting Venous Access Device (VAD) Nursing Head of Tata Memorial Centre trained 4 nurses to use devices necessary for drawing blood and to manage patients with neutropenia. Between 2014 and 2019, medical professionals received training in transfusion medicine; subsequently, they were able to perform ∼1800 platelet apheresis procedures, 30 stem cell collections, 10 leukapheresis procedures, and 20 exchange transfusions. In 2017, 1 dietician received training in nutrition for immunosuppressed patients.
TYAcan counselors provided psychological support to young patients and helped prevent them from potentially abandoning treatment. TYAcan provided financial support for salvage therapy before transplantation or to cover transplantation expenses. In addition, a 2-bedroom accommodation was created for young patients with hematologic cancers who had traveled to SAIMS from far-flung districts. Pediatric and young adult oncology patients all across central India travel to SAIMS for treatment.
Summary
The most important achievement of this program to date has been training clinicians and nurses to be skilled in the field of hematologic disorders. There were no such medical professionals in this area previously, but training these professionals is an enduring aspect of the SAIMS program. This program has been made possible by multifaceted endeavors in social entrepreneurship.
Authorship
Conflict-of-interest disclosure: The authors declare no competing financial interests.
Correspondence: B S Ankit, Department of Medical Oncology, Sri Aurobindo Institute of Medical Sciences, Ujjain State Highway, near MR 10 Crossing, Indore, Madhya Pradesh 453555, India; e-mail: bsankit007@gmail.com; and Prakash Chitalkar, Sri Aurobindo Institute of Medical Sciences, Ujjain State Highway, near MR 10 Crossing, Indore, Madhya Pradesh 453555, India; e-mail: prakashchitalkar@gmail.com.
