Blood transfusion is the first line of treatment for a thalassaemia patient. The objective of the transfusion is to provide Red Blood Cells, which carry haemoglobin. However, the Red Blood Cells obtained after component separation always carry some White Blood Cells (Leukocytes). Leukocytes in the blood that is transfused can cause adverse reactions, which can range from mild to severe. This could result in complications and extended stay in hospital. Leukocytes should be depleted from the Red Blood Cells which the patient receives through blood transfusions.

In Transfusion Centres where there is no facility for Pre-storage leuko-depletion or saline-washing, Bed-side Leukocyte Filters need to be provided during blood transfusions. One Filter will be required for every unit of blood that is transfused.

Blood transfusions are vital for patients of Thalassaemia Major. However, they result in a build-up of iron in the body of the child. This overload affects almost all organs of the body. In fact, conditions arising out of iron overload are the main causes of fatalities among thalassaemia patients. Therefore the most important second line of treatment is iron chelation (disposal of iron overload), which is required to be done every day.

Iron chelation can be done either by injectable chelators or by oral ones. The injectable ones, which are delivered using a slow infusion pump, will require the patient to have a needle in the body for 6-8 hours. Compliance by the patient is therefore a challenge. Secondly the injectable chelators can be afforded by very few patients. Even the oral chelators are outside the financial reach of most families. It is a life-saving necessity to provide iron chelators to all patients.

The dosage of iron chelators depends upon the extent of iron overload, and the weight of the patient.

Iron overload and blood transmissible infections are the risks that thalassaemia patients are exposed to. As a result, almost all organs and functions of the body are compromised. Therefore, apart from blood transfusions and iron chelations, it is very necessary that complications are detected and addressed. Simpler solutions can be applied if detection of complications is done at an early stage. In other words, a life-threatening situation can be averted.

In recognition of this fact, guidelines laid down by the Thalassaemia International Federation specify the various investigations that need to be carried out, and their periodicities. These investigations include blood tests, bone scans, and MRIs.

Blood transfusions carry the risk of blood transmissible infections like HIV, Hepatitis B, and Hepatitis C. Though it is mandatory for blood banks to test the blood for all such infections, the tests are not fool-proof. The prevalent systems for testing of blood carry a large window period. This is the period from the time of infection to the time that the tests are able to detect the virus. If one donates blood during this period, the infection escapes detection, and the recipient of that unit is exposed to risk.

IStudies conducted in Mumbai indicate that 14% of thalassaemia patients have tested positive for Hepatitis C. Antibodies for Hepatitis C have been detected in their blood. It is necessary to carry out further tests to determine the viral load, and conclude on the need for treatment. It is also necessary to check the damage to the liver and the type of the virus.

The basic tests that need to be carried out are “RNA-Quantitative”, which will determine the viral load, and “Genotype” which will determine the type of virus. This will form the basis for the medical personnel deciding on the need for treatment.

14 % of thalassaemia patients in Mumbai have tested positive for Antibodies of Hepatitis C. The various baselines tests for viral load, fibroscan, and blood tests will determine whether the virus has a potential of causing damage to the liver. Once the risk is established it is very important that prompt treatment is carried out. The liver of a thalassaemia patient is, in any case, at risk due to iron overload. Hepatitis C will result in a double attack on the liver. If not treated promptly, the liver can be seriously scarred, leading to cirrhosis and carcinoma.

Introduction of new drugs have brought hope to such patients. The newer drugs are orally administered as compared to the earlier combination of injections and oral medicines. Additionally, they have a shorter treatment period, have a higher success rate, and are financially cheaper. The treatment entails close monitoring by various tests, and proper action by experts.

The total cost for the treatment which includes the cost of the medicines, cost of tests and the cost of supervision. The figures mentioned below are average costs which will vary with the period of treatment. (anywhere from 3 to 6 months).

Bone Marrow Transplants offer a permanent cure for thalassaemia. Transplants are found to be of lower risk for younger patients who can be expected to have lesser iron overload, and lesser damage to organs. But the primary hurdle in this procedure is to find a matching bone marrow donor. This is done by typing the Human Leukocyte Antigens (HLA) of patients and potential donors. The highest chance of finding a matching donor (25%) is from a sibling. It is advisable to also type the HLA of the parents. Haplo-identical transplants (from parent to patient) have met with some degree of success.

It is therefore important to carry out a HLA typing exercise of those thalassaemia patients who are below 10 years of age, and who have siblings. It is desirable to carry out HLA typing of the patient, siblings, and parents. For each family, it would be necessary to carry out the typing of 5 members on an average.

Management of a thalassaemia patient is a life-long process. It involves blood transfusions, iron chelation, investigations and treatment for various complications. The disorder places a huge financial burden apart from the physical and mental distress.

Bone Marrow Transplants offer a permanent cure. This is possible if the donors is fortunate to find a matching donor, and raise the funds required for the transplant. A successful transplant, reduces the demands on the blood service, reduces the continuous financial burden on society, and eliminates mental and physical distress.

The cost of carrying out the Bone Marrow Transplant, includes down-staging of the patient, carrying out the transplant, and post-operative management.

Thalassaemia major is a very serious blood disorder, which puts huge demands on the families of the patients. The challenge drains them physically and mentally. Most families belong to the financially weaker sections of society. They have difficulty in making ends meet, in any case. The need for medical treatment puts further pressure on their meager resources. They sometimes choose the easy option of not sending their thalassaemic child to school.

It is necessary to bring normalcy in the lives of the children. Education will equip the children to understand the disorder, cope with it, and have a positive approach to life. They can surely grow up to be responsible citizens and contribute to their families and society.

Financial support is required for tuition fees, books, uniforms, and other expenses related to academic pursuits.

Comprehensive management of thalassaemia calls for a range of steps to be followed by patients. Patients and their parents should be made aware of different aspects of the treatment. Also they should be kept abreast of newer developments. It is necessary to provide information to thalassaemic children and their parents.

Think Foundation will organize, as in the past, workshops for patients and parents. Each Workshop has many workstations, each manned by a team of doctors and dealing with one aspect of the treatment. This provides an opportunity to thalassaemic children and their parents to understand the disorder and address their problems.

Blood transfusions, medicines, medical investigation, and visits to the doctor are routine for a patient living with Thalassaemia Major. Many patients belong to financially disadvantaged families, and find it very difficult to cope with the disorder. It is very necessary to bring some joy and happiness in their lives.

Think Foundation organizes outings to entertainment parks, cinemas, malls and hotels.

Day Care Centres play the very important role of providing comprehensive treatment to children living with Thalassaemia Major. Children get registered with these Day Care Centres. The visit of the children are planned and not crisis-driven. All aspects of the treatment are taken care of, as the children are monitored with periodic follow-ups. The advantages of a Day Care Centre are as follows:

1. Assured blood transfusions with no uncertainty of availability of blood.
2. Not having to seek admission leading to faster completion of transfusion, thereby reduction in absence from school/workplace.
3. Receiving transfusions with other thalassaemic children and not with other patients.
4. More healthy and comfortable environment.
5. Peer activities and counselling.
6. Comprehensive treatment with periodic follow-up.

Day Care Centres need to spread across the geography of the city so that travel time and inconvenience is minimized. Think Foundation has been responsible for starting 6 new Day Care Centres in Mumbai. The Foundation intends setting up Day Care Centres in the interiors of Maharashtra, where there is a complete absence of public medical facilities. Transfusion chairs and cots, air conditioners, music systems, games, library, lockers, resting area for parents etc. will make the lifelong treatment of a thalassaemia major child possible in a comfortable, convenient and happy atmosphere. The Centres aim to provide blood transfusions, medicines and investigations free of cost.

Think Foundation organizes Screening Camps for Thalassaemia Minor in colleges, offices and residential areas. This is aimed at prevention of Thalassaemia Major. We intend screening of 50000 youngsters every year. Prevention of a single birth of Thalassaemia Major is huge saving in terms of money and blood units, not to mention the mental agony, to the family.

The Camps are preceded by an Awareness Campaign, which involves display of posters and banners, awareness lectures, and distribution of manuals and leaflets.

Thalassaemia Major is a serious genetic blood disorder, which is normally diagnosed in the first year of the child. For the child to be a Thalassaemia Major, both parents have to be Thalassaemia Minor (also called as ‘trait’ or ‘carrier’). The parents are not aware of being Thalassaemia Minor.

The most important aspect in the fight against Thalassaemia is Detection of Thalassaemia Minor. For this, an awareness exercise has to be carried out among youngsters, followed by providing a facility for detection.

Think Foundation conducts a structured programme for Screening for Thalassaemia Minor in colleges, offices and residential areas. This involves creating awareness, collecting blood samples, carrying out diagnostic tests, handing over reports, and counselling those who are Thalassaemia Minor.

Thalassaemia Major is a serious genetic blood disorder, which is normally diagnosed in the first year of the child. For the child to be a Thalassaemia Major, both parents have to be Thalassaemia Minor (also called as ‘trait’ or ‘carrier’). The parents are not aware of being Thalassaemia Minor.

The most important aspect in the fight against Thalassaemia is Detection of Thalassaemia Minor. Creating awareness and getting youngsters to do a test for Thalassaemia Minor is a challenging exercise. This exercise needs to be carried out at different levels – in schools, in colleges, at work places, at the time of marriage, with gynaecologists, during routine blood tests in laboratories etc.

The most easily implementable filter for screening for Thalassaemia Minor is at the stage of visit to gynaecologists. There is a need for the Protocol for Ante Natal Care to include a test for Thalassaemia Minor. The expectant mother needs to be screened, followed by screening of the husband if necessary, and followed by a Pre Natal diagnosis of the foetus if necessary. This can lead to prevention of Thalassaemia Major.

The obstetrics and gynaecology community needs to be sensitized about prevention. A Seminar for doctors and follow-up workshops for smaller groups will serve the purpose.

In the fight against Thalassaemia the most important activity to be carried out is an Awareness Campaign. The message of getting screened for Thalassaemia Minor should reach every youngster The media has a very important role to play. Television and the Internet are two very important mediums. A well-made film, which is made for telecast can reach out to a very wide audience. This can be shown on television and in theatres.

Before every blood donation camp Posters and Banners are distributed for display at the venue of the camp. These could be at colleges, corporate offices, residential areas, railway stations etc. The Posters are displayed for a week before the drive. The objective is to inform and motivate donors.

After the Blood Donation Drive, Thank You Cards, Donor Tags, Certificates are issued to donors, volunteers and organizers. This serves to recognize donors and organizers and ensure that they repeat the act.

The objective of any blood programme is to ensure that safe blood is available to those in need. Voluntary Blood Donation Camps best serve this purpose. The objective is to maintain a positive balance of blood units in Blood Banks so that the search for blood donors doesn’t begin after the need has arisen.

Think Foundation organizes more blood donation camps than any other NGO in Mumbai, and is the largest provider of blood to the city. Camps are organized in colleges, corporate offices, religious institutions, railway stations, public places and residential areas.

The city of Mumbai has more than 50 blood banks which cater to the requirement of the city. Most of them participate in blood donation camps aimed at the general public. However the sequence of activities during a drive differs from one blood bank to another. This lack of uniformity is unsettling to donors and organizers.

Think Foundation plans to organize workshops for personnel in blood banks with the basic purpose of ensuring uniformity in operations, and compliance with the protocol laid down for blood donation camps. The workshop will also touch upon the aspect of motivation and inter-personal skills.

Reaching out to potential donors is the most important aspect of the blood donation activity. The apprehensions and questions in the minds of potential donors need to be addressed. The best way of doing this is through word of mouth on a one-to-one basis or through lectures.

Motivators need to be trained and staffed in direct relation to the number of drives. Atleast two motivators are required to meet the demands of the large number of blood donation drives.The support that is required is for staffing and training of these motivators.

Think Foundation plans to have an annual Felicitation Programme for Donors who have donated blood more than 25 times/50 times/100 times. Similar function will be held to felicitate blood donation organizers. Corporates will be presented with a Social Responsibility Awards. Colleges will be presented awards at a separate function.

Platelet donation through the process of “apheresis” is a subject which most people are not aware of. This awareness needs to be created by using various media. Posters, Leaflets, Power Point Presentations etc. need to be designed and distributed.

Think Foundation coordinates the activities of the Lifesavers Club, which has Platelet Donors as its members. The Foundation receives calls from various hospitals and patients for Single Donor Platelets. Members of the Lifesavers Club are then contacted and requested to donate platelets at the apheresis centre to which the patient is attached.

There is a need to increase the membership base within the city. Also, the Lifesavers Club needs to cover other cities in the country.

The Lifesavers Club is a very exclusive club, and the first one of its kind in India. Members are persons who have understood the time consuming process of platelet donation, agreed to be on call, and have responded to call of cancer patients and others dependent on platelets.

We would like to organize programmes to provide recognition to the members. The programme also hopes to give information about platelets and related subjects, provide value to the members, and offer a platform for interaction.