World Thalassemia Day 2024 and The Importance of Health Insurance in India

World Thalassemia Day 2024 is celebrated around the world every year on May 8th,2024 to bring attention to thalassemia, a genetic blood disorder that makes it hard for the body to make healthy red blood cells (RBCs). This day is meant to bring attention to the problems that people with thalassemia face, such as severe anaemia and possible long-term problems if they do not get the right treatment on time. It stresses how important it is to find and treat the disease properly.

People with thalassemia need to be treated for the rest of their lives with regular blood transfusions, chelation therapy for iron overload, and sometimes even more advanced options like bone marrow transplants or gene therapy. These extensive care and treatments cost families and the healthcare system a lot of money. This is why people with thalassemia need to have comprehensive health insurance. This way, they can get good care without having to worry about money for their families. 

Unfortunately, it has been hard to get health insurance in India that covers thalassemia treatment for a long time. There are still a lot of problems and gaps that need to be fixed. In this article, we will learn more about thalassemia, its importance and challenges, and ways to address the gaps in its prevention and treatment.

About Thalassemia

In order to address the global problem of thalassaemia, the Thalassaemia International Federation (TIF) was established in 1987. Some parents and patients who primarily represented the National Thalassemia Association founded it as a nonprofit organisation. At first, thalassaemia was successfully controlled and prevented in Europe, but it soon became apparent that other continents were still plagued by the issue.[1]

World Thalassemia Day was celebrated for the first time in 1994. Since then, TIF has worked to support patient rights, advance preventative initiatives, and guarantee that patients receive quality care everywhere.

Thalassemia is a genetic blood disorder that affects millions of people worldwide and is a major health issue in India. Over 100,000 people are affected, and an estimated 40 million carry the thalassemia gene. The condition is most common in the northern and western parts of India, along with Asia, Africa, the Middle East, and Mediterranean countries worldwide. [2][3]

World Thalassemia Day's theme for 2024 will be "Empowering Lives, Embracing Progress: Equal and Accessible Thalassemia Treatment for All." Its main goal is to make sure that all people with thalassemia have equal access to all advanced treatment options, therapies, medications, and care. It also aims to raise awareness and get the government to invest more in research so that it can be done better.  

Symptoms Of Thalassemia

Thalassemia is a genetic disease that is passed down through generations. It is caused by a mutation in haemoglobin-producing cells of the DNA, which affects the oxygen-carrying capacity of red blood cells. 

The symptoms depend on the type of thalassemia and range from mild to severe. They are: 

• Lack of energy

• Breathing problems

• Slow Immunity

• Slow growth

• Malformations of the bones

• Pale Skin

• Inflammation in the legs and stomach

Distinct Kinds of Thalassemia

Haemoglobin (Hb) is made up of two proteins, which are known as alpha globin and beta globin. There are two different types of thalassemia based on how much of these two proteins are made:

1. Alpha thalassemia is present when the alpha chain is harmed.

2. Beta thalassemia happens when mutations affect the beta chain. 

Different levels of severity can separate thalassemia into three groups: trait or minor, intermedia, and major.

1. Thalassemia Trait: Since only one gene is affected, people with this trait usually do not have any symptoms and do not need any treatment. These people often carry the genes and can pass them on to their children. 

2. Thalassemia Intermedia: This group includes people with mild symptoms who do not need any blood transfusions. The signs include an enlarged spleen, slow growth, and weak bones as a result of this disease.

3. Thalassemia Major: It is the worst kind, and people with it need blood transfusions or stem cell transplants to live. It happens when a person has two mutated genes, one from each parent. These individuals are unable to produce normal haemoglobin and have abnormal bone structures. 

Challenges in Health Insurance Coverage for Thalassemia in India

For policymakers and healthcare companies in India, closing the gaps in health insurance coverage for thalassemia patients is still a big problem. Let’s look at the challenges they are facing:

1. Lack of Awareness and Understanding: One of the main problems people with thalassemia face when trying to get health insurance is that they do not know much about it or understand it completely. Many people do not even know that thalassemia exists or how important it is to get checked and diagnosed early. This lack of knowledge often causes diagnoses to be delayed and stops people from getting the right insurance coverage.

2. Exclusion or Denial of Coverage: Thalassemia is often seen as a pre-existing condition by insurance companies, which means that treatments related to thalassemia are not covered or claims are denied. This is a big problem for people and families who are already struggling with the high costs of thalassemia treatments.

3. Inadequate Coverage Limits: Even when thalassemia is included in the insurance policy, the coverage limits are often insufficient to meet the annual or lifetime limits. It can run out very quickly, leaving families to pay for the rest of the costs by themselves.

4. Uncovered specialised care: Thalassemia management often requires specialised care, such as regular blood transfusions, chelation therapy, and potential bone marrow transplants. However, many Indian health insurance plans do not cover these specialised treatments well enough, so patients have to pay for them out of their own pockets.

5. Regional Differences: In different parts of India, the types and amounts of health insurance that cover thalassemia can be very different. People who live in cities or wealthy areas may have easier access to insurance options, while people who live in rural or underserved areas may have a harder time getting full coverage.

6. Problems with Affordability: Expensive premiums and out-of-pocket costs can make health insurance policies hard for many low-income families with thalassemia to afford. This often means they have to give up or limit their insurance coverage, which makes the cost of managing the condition even higher.

Addressing the Gaps: Towards Comprehensive Health Insurance Coverage for Thalassemia

To help people with thalassemia get better care and keep their family's budgets in check, a number of important steps need to be taken:

1. Education and awareness campaigns: We need to work together to get more people to know about thalassemia, its genetic effects, and how important it is to get screened and treated early. This can be achieved through coordinated public awareness campaigns, educational programmes in schools and communities, and collaboration with healthcare providers and patient advocacy groups. 

2. Thalassemia Coverage in Health Insurance Plans: By law, all health insurance plans must provide coverage for thalassemia. This way, policymakers and regulators can make sure that it is not seen as a pre-existing condition and that patients can get the coverage they need. Companies like InsuranceDekho can help you with any issues or concerns regarding the disease, providing assistance in getting the best insurance plan that fits your needs. 

3. Complete Coverage for Managing Thalassemia: Health insurance plans should cover all of the different types of treatments for thalassemia, such as regular blood transfusions, chelation therapy, and specialised procedures like bone marrow transplants. This should include coverage for both inpatient and outpatient care, as well as the management of complications.

4. Financial aid and subsidies: Governments and healthcare organisations should take a look at supporting low-income families with thalassemia through subsidies, financial aid programs, and welfare programs. This could help close the gap in affordability and make sure that everyone has equal access to the medical care they need.

5. Collaboration and Partnerships: Government officials, insurance companies, healthcare facilities, and patient advocacy groups must work together effectively to solve the problems in thalassemia care and insurance coverage. This can help make it easier to create customised insurance plans, make the claims process easier, and provide comprehensive insurance solutions.

Government Initiative For Thalassemia

The Indian government has taken a number of steps in the fight against thalassemia. Here are some key initiatives:

• Thalassemia Bal Sewa Yojana (TBSY): The Thalassemia Bal Sewa Yojana (TBSY) was started by Dr. Bharti Pravin Pawar, who is the Union Minister of State for Health and Family Welfare. On May 8, 2023, the third phase of this programme began. To help underprivileged thalassemia patients who have a sibling donor get bone marrow transplants, Coal India Limited supports it as part of their corporate social responsibility (CSR).

• National Blood Transfusion Council (NBTC): The NBTC has made rules to make sure that thalassemia patients can get free blood in all states and territories. These rules stress how important it is to manage blood safely and avoid transfusion-transmitted infections (TTIs).  

• Thalassemia Screening and Counselling Center: This center was opened by the Ministry of Health and Family Welfare (MoHFW) at the National Headquarters Blood Bank of the Indian Red Cross Society to teach people how to avoid getting thalassemia. 

Conclusion

World Thalassemia Day is an important reminder of the urgent need to address the gaps in health insurance coverage for thalassemia patients in India. Our goal is to build a healthcare system that gives everyone equal access to high-quality thalassemia care and eases the financial burden on families affected by the disease. We can do this by implementing a variety of strategies that raise awareness, building insurance policies that cover everyone, and strengthening the healthcare infrastructure. 

On World Thalassemia Day, let’s promise to make healthcare more accessible so that people with thalassemia can get the care they need without having to worry about money. We can make a difference in the lives of people if we all work together with dedication. 

See Also:

Know about critical illness health insurance policies

References

1. https://thalassaemia.org.cy/who-we-are/tif-history/

2. Angastiniotis M, Modell B. Global epidemiology of hemoglobin disorders. Ann N Y Acad Sci. 1998 Jun 30;850:251-69. doi: 10.1111/j.1749-6632.1998.tb10482.x. PMID: 9668547. 

3. Burden of thalassemia in India: The road map for control, Pediatric Hematology Oncology Journal, Volume 2, Issue 4, 2017, Pages 79-84, ISSN 2468-1245