"State level Consultation on Status of Thalassemia and Other Hemoglobinopthies in Karnataka" was organised by Sankalp India Foundation with the major thalassemia centers in Bangalore as co-hosts on 9th of March 2016 at Rashtrotthana Parishat, Bengaluru.
The state of Karnataka has 3-4% population who are carriers for one or the other hemoglobinopathy. The median age of the individuals being treated with thalassemia is very low and there is a marked drop in the numbers as the age increases beyond 10 years. There is no specific support from the government for patients suffering from thalassemia unlike the neighbouring states of Maharashtra , Tamil Nadu and Andhra Pradesh. In most centers which treat children with thalassemia, access to chelation therapy, lab investigations etc. is a challenge. There is also no state support for prevention of thalassemia even in the targeted high risk population including the families of the children suffering from thalassemia. The disorder is being treated with different protocols across the state at various Government and Private institutions partially subsidised/supported by the institutions themselves.
The state level consultation was organised with the following objectives:
- Enhance cooperation and coordination between the various centers to foster knowledge exchange and be able to benefit from the strengths of each other to ensure better care and management for thalassemia.
- Do a need-gap analysis for thalassemia and other hemoglobinopathies for the state of Karnataka.
- The institutions/organisations involved in care-giving to thalassemiacs to come together and formulate a joint strategy to sensitise the government about the need to enhance organised support from the state to the individuals suffering from thalassemia.
- Establish long term working strategy for the group.
Two representatives from each center involved in care-giving to a sizable number of patients with thalassemia are being invited to attend this program. Each institution was requested to do an pre-assessment of the care and management facility at their center and share the findings prior to the meeting. This allowed better understanding of common problems.
The event was attended by the representatives from 7 major organisation involved in thalassemia care and management in Karnataka namely:
- Thalassemia Day Care Centre, Indira Gandhi Institute of Child Health, Bangalore
- Project Samraksha, Rashtrotthana Parishat, Bangalore
- Bangalore Medical Service Trust, Bangalore
- Karnataka Thalassemia Society, Bangalore
- Vanivilas Hospital, Bangalore
- Sankalp-People Tree Centre for Paediatric Bone Marrow Transplantation, Bangalore
- KLES Dr. Prabhakar Kore Hospital & M.R.C
Besides those who attended the meeting, responses were also received from the following institutions:
- Manipal Hospitals, Bangalore
- Kasturba Medical College, Manipal
Through the day-long consultation process, the group arrived at a consensus on the most urgent gaps in the prevention, management and cure of thalassemia in the state and agreed to the following key areas where urgent Government support is required.
1. MATERNAL SCREENING
Large scale prevention program to be started with maternal screening for thalassemia as the first intervention area. It was discussed that currently the option of screening mothers is not available in the state leading to the birth of about 400 new born with the disease each year. Immediate steps are needed to offer screening for thalassemia to all women who are pregnant within the first trimester of pregnancy. Urgent need to offer screening to the family members of the known cases of thalassemia to prevent further births was also expressed.
2. SUPPORT FOR DETECTION and PREVENTION
There is no support for molecular workup to confirm the disease for the children who are suspected of suffering from thalassemia. In addition, there is also no support for the antenatal screening which is crucial to avoid further births. Urgent state support is needed to make molecular work-up and antenatal screening.
3. SUPPORT FOR MEDICINES
While blood is being organised free of cost by the centers involved in management of thalassemia, there is an urgent need to provide chelation therapy. Most children continue to face massive complications because they are unable to afford the crucial life saving medicines. With a cost burden of about Rs 25,000/- a year, chelation therapy is out of reach for most patients. Chelation medicines should be provided free of cost to all patients within the state.
4. SUPPORT FOR LAB INVESTIGATION
Deaths in thalassemia are because of complications which build over a period of time. If detected early, they can be managed and reversed. Regular lab investigations including X-Ray, Ultrasound, MRI, Dexa- Scan, Ferritin levels, biochemistry and hematology investigations etc. are needed to detect and manage complications. There is an urgent need to cover the cost of all lab investigations needed for thalassemia management.
5. CURE
Bone marrow transplantation(BMT) is the only known cure from thalassemia. This option is now available to the patients within the state of Karnataka for a cost which compares to a few years of management of thalassemia. However, at around Rs 8,50,000/- upwards, BMT is out of reach for most patients and those few who are able to get access to it rely upon the limited funds available through NGOs and public at large. BMT will not only cure the child, but also reduce the burden on the healthcare setup by reducing both the overall blood requirement and ongoing costs of management. The need is felt for the state to cover the cost of BMT and make it available to the patients of the state.
The group agreed that the above 5 demands are the most crucial and urgent. The group requests the Government to take urgent note of the above and enable prevention and proper management of this disease. The group also decided to meet at least on a quarterly basis.
"Dr. P L Nataraj with Joint Director Blood Safety, Karnata State AIDS Prevention Society, Bangalore also attended the meeting and assured the participants of support from the Government. He urged the organisations to work together towards the best interest of the patients "
The group also felt urgent need to request KSRTC to offer travel concession to children suffering from thalassemia in-line with what is being done for the patients suffering from cancer. Beside the demand to the Government there was lively discussion on the possibility to collaborate with each other for the purpose of development of common treatment protocols and share the facilities which have been developed.
The outcome of the first meeting was promising. We hope that the momentum which has been created will continue and yield positive outcome.