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Submitted by PatientsEngage on 7 May 2018
Thalassemia patient Gagandeep Singh Chandok is on the right most in white T-shirt with his  brother and his parents

Gagandeep Singh Chandok, 35, who has thalassemia, had started an online petition in 2017 urging the Government of India and medical community to allow clinical trials for gene therapy that holds promise of saving thalassemia patients from requiring blood transfusions. Read his passionate appeal.

I was diagnosed with a genetic disorder beta thalassemia major as a young child. I was advised to start blood transfusion immediately. I received my first blood transfusion in Bombay when I was one-and-a-half years old. My mom tells me I was very uncomfortable with the needle inside me and screamed my lungs out. I was required to take blood transfusion every 15 days to survive. Then at age six, besides the fortnightly transfusion, I was now required to take the iron chelation therapy. This time they had to be administered daily. The iron chelation therapy is given subcutaneously where the needle is under the skin for 10 to 12 hours to remove the excess iron from the body, a side effect of blood transfusion.

Thalassemia is an inherited condition. My parents did not know that they were thalassemia minors. Thalassemia minors are silent carriers with no symptoms but are able to pass thalassemia on to their children.

I had poor health as a child and an abnormally protruding belly. I was taken to a number of doctors in Bangalore but none of them could get a grip on what was wrong. Finally, one doctor suspected thalassemia and advised that I visit Bombay for further check-ups. This was in 1985, when medical knowhow in Bangalore was still building up. In Bombay, I went to haematologist Dr. M B Agarwal who, after conducting some tests and physical examination, confirmed I had thalassemia. My body was not able to make enough haemoglobin and red blood cells and that’s why I was falling ill frequently. My parents, forever optimistic, were absolutely devastated.

Fortunately, my school and college days were trouble free. In school I had extremely supportive teachers and in college I had a few close friends who bailed me out with books and notes selflessly. I have been working for the last 12 years now.

Currently I am taking Desferal injections through the infusion pump and oral iron chelator called Kelfer (13 Tablets a day) with Vitamin Supplements to counter the side effects.

Thalassema Support 

Since my diagnosis, my father has been conscientiously keeping abreast of all news and developments on thalassemia. He extensively researches on best medicines and treatment available not just in India, but the world over. He would contact my relatives in UK to source infusion pumps and the Desferal drug (an iron chelator) from Mumbai which was not easily available in India. In 1987, my father setup the Thalassemia Society in Bangalore to spread awareness, disseminate information and to reach out to others facing similar challenges.

Inspired by my father, I too have become a strong, vociferous advocate for the prevention and treatment of thalassemia.

In January 2016, I started a thalassemia Whatsapp group called ‘Thal Angels in Bangalore United’ which has 130 members today, some even from outside India. We exchange information and support each other.

Treatment for Thalassemia 

There is no known cure for thalassemia except bone marrow transplant (BMT) and most patients in India can neither afford it nor do they have relevant matches with siblings or others. BMT can be done only for children up to the age of 10 after which it is a serious risk.

The only potential cure available to us is “Gene Therapy”. It is a process by which some of our stem cells are harvested, the defective gene is corrected, transplant of the corrected cells is done and made to produce more blood cells. We were thrilled when this research was started in India. Sadly, due to a lack of incentives, willingness and support, the research has come to a standstill.

There are clinical trials for Thalassemia Gene Therapy going on around the developed world. Some success has been achieved. In the study group, some of the patients no longer required blood transfusions and others were able to significantly reduce the number of blood transfusions needed. Now, imagine if we could live without blood transfusions. That would be one the biggest news for the thalassemia community. Yet, the clinical trials in India were stopped even though we have the highest number of Thalassemia patients in South Asia.

Seeking Government Support 

In March 2017, I started an online petition, https://www.change.org/p/government-of-india-director-general-of-health-start-gene-therapy-for-thalassemic-cure-in-india-immediately urging the government and medical community to re-start this critical treatment in India. So far I have managed to get 27,075 signatures on the petition and we were unable get more signatures as people are scared or uneducated or poor. I am hoping to reach the policymakers and get their assurance on gene therapy trials.

We need the Indian Council of Medical Research (ICMR), Ministry of Health and Family Welfare and Department of Biotechnology to come up with a national thalassemia plan or national thalassemia policy and expedite gene therapy cure for thalassemia. We need them to work on prevention, care and cure strategies. They need to provide financial investment for gene therapy for all. On 4 May 2017, I got a reply to my direct communication from the Central government stating that state needs to take steps in this. They did not understand we are asking for a national policy which is for the whole Country. As it has been one year since I had started the petition as I was unable get more signatures the Petition Auto Closed on the website, but my battle continues offline.

I have seen many of my friends die. How many of us have to die, before this life-saving treatment is re-started?

This therapy will help save our lives and help us live without worrying about injections and transfusions. We will be able to work, get married, travel and live our lives.

There are many like me in India, almost 35 lakh thalassemia patients taking blood transfusions and injections. Of this number, many are below poverty line and barely able to afford treatment costs which can go up between Rs 50,000 to one lakh per month.

Discrimination against patients with Thalassemia 

Apart from this, people with thalassemia face severe discrimination in education, employment, and other spheres of life. There is also social stigma as there is fear in society about our condition. We live in secrecy without revealing our condition. I know a girl whose marriage was cancelled thrice because her brother had thalassemia, I know of another person who was refused a job because he had thalassemia.

How do we remove fear and discrimination in society, workplace and corridors of power? How are we supposed to live? And then the government expects us to pay GST and all other taxes, without any consideration or concessions. We cannot get life insurance or medical insurance as yet.

A wish for Thalassemia patients

I wish to tell other thalassemia patients to stand up and fight for their rights. The three things I would like to fight for are:

  • Revive gene therapy trials in India
  • Free and subsidize treatment for thalassemia patients
  • Build compassion and support in society.

As there is no cure for thalassemia, we need to work aggressively on its prevention. Just as we spread information about HIV/AIDS, similarly there should be information given at college levels, health care centres, public clinics, hospitals. Gynaecologists should strongly advice on testing to identify carriers before planning a child. Only genetic screening and counselling can assist in controlling the spread of thalassemia.