Well, in my opinion, Sickle Cell Disease and Thalassaemia are global problems that are growing. Ignorance and avoidance have limited the recognition that these disorders have a true impact on society. With global immigration increasing, we have to look at the global impact these diseases have on children, healthcare, healthcare cost, and education worldwide.
Currently, there are American voices crying out for people suffering with these diseases, and they are getting things done in America. Thank God. There are no global voices, however, telling the worldwide story of pain, suffering, and health-care limitations related to these two diseases.
As Sickle Cell Disease and Thalassaemia are silently transferred from one generation to another, all voices are important. Hari Prabhakar, from the Sickle Cell Disease Center at Gudalur Adivasi Hospital in India offers his voice, and I gratefully listen.
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Working at the Sickle Cell Center at Gudalur Adivasi Hospital over the past 5 years has taught us a wide variety of things from both a patient and provider perspective.
Existing literature and health authorities continually stress the importance of cultural sensitivity and community consensus as a means of developing an effective healthcare management system. We have certainly found this to be true, but still face challenges in the implementation of effective healthcare programs and must overcome obstacles such as:
Providing awareness of the disease in the Adivasi population - This is extremely difficult when dealing with a population with a strong and widespread belief system. We use members from the Adivasi community as key health educators (in the villages) to help in gaining acceptance and support for the program. However, a lot more needs to be done regarding genetic counseling managed internally and that does not offend Adivasi group’s beliefs.
Confidentiality of test results - Given that awareness of the disease and its causes is still unfamiliar, there exists a fair amount of shame when an individual is labeled with the disease. It is interpreted that a curse is upon them. Cards are given out to document test results of individuals and are coded to be interpreted only by healthcare providers and patients. Explaining blood test results is also the responsibility of an Adivasi health worker, who we feel can best explain the disease to the patient and instruct them on the appropriate course of action.Getting medications - Medications like Hydroxyurea (a rather expensive cancer drug used for the treatment of SCD) is hard to get in developed countries where there are areas of geographical isolation. Transportation is too difficult or the patients are migrant workers with little time to take care of themselves. We have tried to stock supplies of critical medications like Hydroxyurea in area Centers throughout the Gudalur valley, where patients can also get their blood tests taken. And, a Sickle Cell Disability Fund is in place to help cover patient transportation costs and make up for lost time in an already unsteady employment situation.
Funding is always a major problem - With the prospects of offering “free” treatment to Adivasi patients and inpatient treatment for complications, we pursue public-private partnerships, private donations/grants, and cross-subsidize from non-Adivasi patients to ensure equity and access in services. Community-based insurance for SCD is also a possibility in order to ensure long-term sustainability and empower patients to become an active part of the financing process.
Researching and developing cheaper more sustainable medicines - In a resource-strained environment where other basic public health needs are minimal, it raises to question the use of Hydroxyurea, the expensive tertiary-care cancer drug. As a result, we have team working to develop a plant-based anti-sickling agent that may be cheaper than Hydroxyrea and more sustainable to produce. In Nigeria, for example, the plant-based drug, Ciklavit, has been shown to have positive results, and we hope that have something similar which could be used locally and internationally.
So, what can we learn for use in the United States?
Regardless of whether we are dealing with a rural village or sprawling metropolis, developing skills of health workers to serve as liaisons to the community is important in gaining support and acceptance. A health service with little confidence from the public will ultimately fail.
There certainly needs to be a push for greater training in SCD among health workers, many of whom could be chosen from the local community to conduct education programs, promote counseling, etc… Complete coverage of the SCD population in the US should be done in tandem with local communities.
Most importantly, however, listening to patients and determining their needs, capabilities, and limitation will play a crucial role in expanding the role of sickle cell programs in the US into a wide-ranging program rather than top-down vertical program.
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( HARI……. Thanks for your contributions to this blog and your suggestions.)
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