India: Health Ministry Releases New Draft Policy On Prevention And Control Of Hemoglobinopathies For Public Consultations

On August 07, 2018, the Ministry of Health and Family Welfare (MoHFW) released the new draft policy for Hemoglobinopathies (Thalassemia, Sickle Cell Disease and variant Hemoglobins) in India1.

Thalassemia, and Sickle Cell diseases are two common genetic disorders that are chronic, life restricting and require long and specialized treatment. India has the largest number of children with Thalassemia major in the world – about 150,000. There are almost 42 million carriers of - thalassemia trait, and about 10,000 to 15,000 babies with β-thalassemia major are born each year..  Hb E is variant hemoglobin that significantly contributes to the disease burden of hemoglobinopathies. The prevalence of sickle cell disease is variable, with very high percentage in many tribal communities. For sickle cell disease there are about 25, 00, 000 carriers of the gene (Hemoglobin AS), and about 1, 25,000 patients of sickle cell disease.

About Hemoglobinopathies

Hemoglobinopathies are genetic disorders with Mendelian pattern of inheritance. Genes are, therefore, the primary determinants of the disease with environmental, nutritional and infectious factors playing only a limited modifying role at best. Hemoglobinopathies are disorders with autosomal recessive inheritance and thus, have equal prevalence in males and females. Every person carries two copies of a gene, one inherited from each parent. In autosomal recessive disorders, parents are carriers. They are individuals with only one abnormal gene, the other being normal; while in the patients both copies of the gene are abnormal. Thalassemia major, Thalassemia intermedia, Sickle cell disease and Hb E, occurring singly or in combination, are the major clinical syndromes causing socio economic burden of - hemoglobinopathies in India.

Challenges in developing a plan for treatment and prevention of Hemoglobinopathies in India.

The epidemiological data is incomplete, and the precise burden of these disorders is unknown. Treatment consists mainly of giving repeated blood transfusions, bringing with it the challenges of motivating donors to give blood, and avoiding the transmission of infections such as HIV, hepatitis B and C. The excess iron that gets into the body through the blood transfusions needs to be removed by use of the expensive chelators. Bone marrow transplant as a curative treatment requires a HLA matched donor, specific infrastructure and trained doctors and nurses. The physicians need specialized training to treat the affected patients, as well as monitor and manage the complications of therapy. Treating sickle cell disease is equally challenging, especially as patients are often living in remote areas, and have poor socio-economic status. The management of pain and vaso-occlusive crises is difficult.

Recognizing the great socio-economic burden of these disorders, the government constituted a technical committee comprising of experts and representatives of parent organizations to formulate a policy on hemoglobinopathies, which aimed at informing and providing broad guidance on prevention and management of these disorders. The policy encompasses the public health goal by providing:

  1. Affordable and quality care treatment to all patients with Hemoglobinopathies (affected population), and
  2. Reduce the prevalence of hemoglobinopathies through carrier screening and prenatal diagnosis
  1. Affordable and quality care treatment to all patients with Hemoglobinopathies
  • Strengthening treatment centres in Central Government institutions and States in all districts to provide access to affordable and quality services for the management of patients with Thalassemia major by regular and safe blood transfusions and iron chelation therapy; treatment for Sickle Cell Disease with penicillin prophylaxis, immunizations and hydroxyurea, monitor for early detection of any complications, and for their optimal management to prevent morbidity and mortality. 
  • Setting up National/Regional Centres of Excellence as referral and training centres for hemoglobinopathies.
  • Strengthening facilities for separation of blood components and blood storage.
  • Initiation of newborn screening for Sickle Cell Disease where required, and institute prophylactic antibiotic therapy to improve survival rates and reduce morbidity.
  • Establishing facilities for bone marrow transplants in tertiary care institutions.
  • Setting-up of central Hematopoietic Stem Cell donor registry, to facilitate bone marrow transplants in, appropriately identified, patients lacking sibling donors. .
  1. Reduce the prevalence of hemoglobinopathies through carrier screening and prenatal diagnosis
  • Extensive awareness and education programmes in the community, schools and colleges.
  • Inclusion of basic knowledge about genetics, inheritance and prevention of thalassemia major and sickle cell diseases in the school curriculum. 
  • Strengthening laboratories at the District level for facilitating and supporting screening and diagnosis of carriers, including extended family members of patients with thalassemia and sickle cell. 
  • Screening for carrier status of β-thalassemia, HbS and HbE in adolescent students in schools and colleges, to empower them to make informed decisions regarding marital and reproductive choices in future.
  • Screening of pregnant women, preferably in the first trimester, for carrier status, and for those who test positive, screen their husbands and enable the at-risk couples to avail services for prenatal diagnosis to prevent the birth of an affected child.
  • Strengthening facilities for prenatal diagnosis in Medical Colleges and selected tertiary care hospitals in the State.
  • Screening of new born children for early detection of sickle cell disease and provide appropriate intervention followed up by counselling of families.  
  • Cascade screening of blood relatives of those affected with thalassemia major or sickle cell disease, as well as screen subjects in high risk communities.
  • In the rural areas, 'Ashas' are envisaged to be trained to identify subjects with severe anemia which could be likely to be due to thalassemia major or sickle cell disease and counsel such patient to enable contact multipurpose worker (Female) for referral to the primary health centre for further testing and confirmation.

Research and innovation in the area of hemoglobinopathies

The policy advocates promoting research to develop innovative treatments for thalassemia major and sickle cell disease, and devise new diagnostic methods, keeping in mind the continuously evolving technology in this field. The policy also suggests requirement of international collaboration, as many countries in the West have been running successful control programs and treatment centers for hemoglobinopathies for several years. India has much to gain from their experience, so that mutual collaborations and discussions would be extremely useful for the success of the program in India. Thalassaemia International Federation (TIF) expertise may be used.

Additional aspects of treatment related issues that need to be implemented

The Policy advocates for provision of medicines, including iron chelating agents, hydroxyurea, leukocyte filters and infusion pumps free of cost to the poor patients. In line with 'Make in India' initiative, the policy advocates for promotion of manufacture of the equipment and chemicals in India, including waiver of GST and custom duties to reduce cost of treatment for the affected families The policy recommends setting up of a patient registry for thalassemia and sickle cell disease to obtain information on the number of persons affected and the number of carriers to estimate patients who require various services.

Note – This policy on hemoglobinopathies covers the prevention strategy, and empowers prospective parents to exercise their right not to have a child with a serious genetic disorder, and protects the rights of an affected child to have access to optimal care. The policy also advocates promoting research to develop innovative treatments for thalassemia major and sickle cell disease, and devise new diagnostic methods, keeping in mind the continuously evolving technology in this field.



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