Personal Stories of Resilience: Navigating Genetic Disorders

To gain and share a personal perspective, I conducted interviews with two individuals from India who have a genetic blood disorder called Major Thalassemia. Both of these individuals do not qualify for life or health insurance, while the “healthy” members of their families have both. This genetic discrimination is a subject that has often been overlooked in the past and should be brought attention to. 

1. What do you think about the pervasive issue of genetic discrimination and underclass that exists? Do you think it’s fair that a disorder beyond your control is being overlooked/disregarded?

From my experience of living with a genetic disorder all my life, I have constantly noticed and felt the discrimination and the gross oversight and negligence of my disorder. Back in the 2000s and 2010s, there was almost absolutely no awareness of Thalassemia. Not only did the general public have no idea about it, but even the doctors were not as informed and aware of the finer details of the disorder. It was always a struggle to be able to put forward anything about Thalassemia. Furthermore, we were asked by the doctors not to tell people about it to avoid being treated unfairly since no one was educated on the matter. Whereas, what we should have been doing instead was raising awareness about the disorder so that more people would know what it is. If the public was more aware, I believe that we would have had a lot more provisions and benefits from the government and the hospitals across the country. 

2. How are the medicines and treatments you receive for your genetic blood disorder within private hospitals funded and managed? 

I buy all my medications from the company’s suppliers in my city. However, the government hospitals do provide them for free. However, there are always many issues with the availability of medicines at government hospitals and it is sometimes difficult to get them on time. These medicines are iron chelators which remove all the excess iron from the blood in the body. The excess of iron is common for all Thalassemia patients and leads to organ damage, therefore the medications are very crucial. This is why we have to pay full price and order it from the company to get it on time. For the treatment (blood transfusion) there are a few blood banks in the city that provide the transfusions for free, however, they don’t have the adequate and additional technology to process the blood most safely so therefore I go to a private hospital which has a fee. The hospital does have some funding for the people who cannot afford to pay for it.

3. How has the absence of insurance coverage for your genetic blood disorder impacted and affected your access to essential medical treatments and what impact does this have on your daily life? 

I believe that having health insurance would be greatly beneficial for everyone who has a disorder that requires frequent treatment. The absence of insurance means that we have to pay for all the treatments and medications needed, which is unfair since we deserve proper healthcare as a basic human right. If we had insurance, we would be able to receive our medicines on time, get the required treatment with the technology that helps keep our transfusions safe and many more benefits. Some so many people don’t get the safest transfusions since the government hospitals don’t have the latest technology and they end up suffering from many more diseases as a side effect of the lack of blood screening. These are basic requirements of our treatments and I believe they should be considered as basic rights.

4. Do you have any opinions on the operational and financial aspects of the blood department in private and public hospitals? 

I believe that every blood bank should have the latest required technology for the blood screening and matching process so that the patients receive safe transfusions. Due to many blood banks not having this technology, their patients have contracted HIV and many other diseases that complicate the patient’s health for the rest of their lives. This is negligence from the hospitals and government since these patients deserve proper treatment and protection which should not be compromised due to lack of funding.