Health and Me

Rachel V Thomas

Why India Must Shift Towards Prophylaxis Care For Hemophilia

India, which carries the world's second-largest population of <span>hemophilia</span> cases—a genetic blood disorder—must shift towards prophylaxis care for the <span>bleeding disorder</span>, said health experts today on the occasion of <span>World Hemophilia Day</span>. 

World Hemophilia Day is observed every year on April 17 to raise global awareness of hemophilia and other inherited bleeding disorders. 

This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment and care. 

According to the World Federation of Hemophilia (WFH), 75 percent of people suffer from hemophilia, without even knowing it, simply because they don’t have access to basic healthcare.

Hemophilia is a rare bleeding disorder where blood does not clot properly, even for minor injuries. It is caused by an error in a specific gene on the X chromosome, leading to a deficiency or absence of clotting factors.

While the condition mainly affects males, women are the genetic carriers. In people with hemophilia, the blood lacks sufficient clotting factors -- which are proteins essential for stopping bleeding.

Whether the bleeding is external, such as cuts, or internal, such as bleeding into joints or muscles, the blood does not clot. So, it can be a very serious disorder. 

Without consistent care, repeated bleeding into joints can lead to 

<ul><li>chronic pain, </li><li>deformity, </li><li>loss of mobility.</li></ul>

<ul><li><span rel="noindex">Hemophilia A</span>: This is the most common type. People with this condition have low levels of clotting factor 8 (factor VIII).</li><li>Hemophilia B: People with this type don’t have enough clotting factor 9 (factor IX).</li><li>Hemophilia C: Also known as factor 11 (factor XI) deficiency. It’s the least common type of hemophilia.</li></ul>

<h2>The Burden Of Hemophilia In India </h2>

Hemophilia A, the most common type, affects about 1 in 5,000 male births, underscoring the urgent need for improved detection and awareness. 

Hemophilia B, on the other hand, is an X-linked genetic disorder affecting 1 in approximately 25,000 male births. 

India bears a significant burden from Hemophilia A. Estimates suggest around 136,000 individuals are affected, but only a small fraction are diagnosed and registered due to unequal access to essential care. 

Dr. Varun Kaul, Professor, Dept of Pediatrics, Guru Gobind Singh Medical College &amp; Hospital, Faridkot, told <strong><em>HealthandMe </em></strong>that in India, systemic gaps, ranging from limited diagnostic access to unevenly distributed treatment centers, continue to restrict access to RRT, especially beyond metro cities.

In contrast, more than 50 per cent of persons with hemophilia globally benefit from regular replacement therapy (RRT) as the standard of care.

Routine replacement therapy (RRT), commonly known as prophylactic care or prophylaxis, is the standard treatment for severe hemophilia.

It involves the regular intravenous (IV) infusion of clotting factor concentrates to maintain factor levels above 1 per cent to prevent spontaneous bleeding, particularly into joints and muscles. 

<h2>Need For Prophylaxis Care For Hemophilia</h2>

Most Indian patients currently rely on reactive, on-demand therapy to manage bleeds after they happen. 

Dr. Kaul said that although this may help prevent the immediate crisis, it fails to stop the cumulative joint damage that often results in permanent disability. 

“Providing regular, scheduled infusions to maintain sufficient clotting factor levels can prevent bleeds entirely, reducing annual bleed rates by 90 per cent and enabling a life free from chronic pain and constant fear of the next bleed,” Dr. Kaul said.

Some progress is visible, as States like Karnataka, Kerala, Jammu and Kashmir, to name a few, have pioneered state-sponsored RRT programs.

“It is now imperative to transition from mere crisis management toward implementing preventive care as a National Health priority,” Dr Kaul added.

<h2>Hemophilia: The Need To Focus On Women</h2>

Dr Rahul Bhargava, Principal Director &amp; Chief - Hematology, Hemato-Oncology &amp; Bone Marrow Transplant, Fortis Memorial Research Institute, Gurugram, stressed the importance of focusing the treatment on females. 

"Carrier testing in hemophilia remains largely focused on affected males, while women who may be carriers are often not included in routine screening,” Dr Bhargava told <strong><em>HealthandMe</em></strong>. 

As an X-linked inherited disorder, hemophilia can present in women with low clotting factor levels, leading to 

<ul><li>prolonged bleeding, </li><li>heavy menstrual cycles, </li><li>complications during surgery and childbirth. </li></ul> 

Most of the cases remain undiagnosed until a clinical event occurs. 

"Identifying carriers through timely testing enables appropriate counselling and informed reproductive decisions. It also supports early diagnosis in families and reduces the risk of severe bleeding complications in future generations,” the doctor said.

Dr Tulika Seth, Professor of Haematology at All India Institute of Medical Sciences (AIIMS) in New Delhi, in a post on social media platform X, stressed the importance of testing for hemophilia. 

"If a child gets prolonged bleeding from a minor cut or injury, or if there are spontaneous painful swellings in the joints after minor falls, or sometimes even by somebody holding the baby, or there's a lot of bruising, people should get the baby tested or the adult tested for hemophilia," Dr. Seth said.

She noted that in mild cases of hemophilia, sometimes a person may not be aware that they have a deficiency, and then when they go for a tooth extraction or any surgery, they may have a problem. 

"So, it's important to know your family history, and if you've had any prolonged bleeding after any pain, then you should tell your doctor and get tested," the doctor said. 

Dr Bhargava also called for a broader approach that includes women in screening programs to help strengthen prevention and long-term management of hemophilia across families. 

Hemophilia management requires attention beyond hospital care to prevent long-term complications.

To reduce bleeding episodes, it is important to:

<ul><li>regularly follow up, </li><li>adhere to treatment, </li><li>maintain joint health.</li></ul> 

<ul><li>safe physical activity, </li><li>balanced nutrition, </li><li>avoiding trauma</li></ul> 

"Integrating medical treatment with lifestyle practices supports functional independence and improves overall disease control,” Dr. Bhargava told <strong><em>HealthandMe</em></strong>.

Health Conditions A-Z

health

World Hemophilia Day

Hemophilia

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Hemophilia A

bleeding disorder

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India, which carries the world's second-largest population of hemophilia cases—a genetic blood disorder—must shift towards prophylaxis care for the bleeding disorder, said health experts today on the occasion of World Hemophilia Day.  World Hemophilia Day is observed every year on April 17 to raise global awareness of hemophilia and other inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment and care. According to the World Federation of Hemophilia (WFH), 75 percent of people suffer from hemophilia, without even knowing it, simply because they don’t have access to basic healthcare. What Is Hemophilia? Hemophilia is a rare bleeding disorder where blood does not clot properly, even for minor injuries. It is caused by an error in a specific gene on the X chromosome, leading to a deficiency or absence of clotting factors. While the condition mainly affects males, women are the genetic carriers. In people with hemophilia, the blood lacks sufficient clotting factors -- which are proteins essential for stopping bleeding. Whether the bleeding is external, such as cuts, or internal, such as bleeding into joints or muscles, the blood does not clot. So, it can be a very serious disorder. Without consistent care, repeated bleeding into joints can lead to chronic pain, deformity, loss of mobility.Hemophilia is mainly of three types: Hemophilia A: This is the most common type. People with this condition have low levels of clotting factor 8 (factor VIII).Hemophilia B: People with this type don’t have enough clotting factor 9 (factor IX).Hemophilia C: Also known as factor 11 (factor XI) deficiency. It’s the least common type of hemophilia.The Burden Of Hemophilia In India Hemophilia A, the most common type, affects about 1 in 5,000 male births, underscoring the urgent need for improved detection and awareness.  Hemophilia B, on the other hand, is an X-linked genetic disorder affecting 1 in approximately 25,000 male births. India bears a significant burden from Hemophilia A. Estimates suggest around 136,000 individuals are affected, but only a small fraction are diagnosed and registered due to unequal access to essential care. Dr. Varun Kaul, Professor, Dept of Pediatrics, Guru Gobind Singh Medical College & Hospital, Faridkot, told HealthandMe that in India, systemic gaps, ranging from limited diagnostic access to unevenly distributed treatment centers, continue to restrict access to RRT, especially beyond metro cities.In contrast, more than 50 per cent of persons with hemophilia globally benefit from regular replacement therapy (RRT) as the standard of care.Routine replacement therapy (RRT), commonly known as prophylactic care or prophylaxis, is the standard treatment for severe hemophilia.It involves the regular intravenous (IV) infusion of clotting factor concentrates to maintain factor levels above 1 per cent to prevent spontaneous bleeding, particularly into joints and muscles. Need For Prophylaxis Care For HemophiliaMost Indian patients currently rely on reactive, on-demand therapy to manage bleeds after they happen.  Dr. Kaul said that although this may help prevent the immediate crisis, it fails to stop the cumulative joint damage that often results in permanent disability. “Providing regular, scheduled infusions to maintain sufficient clotting factor levels can prevent bleeds entirely, reducing annual bleed rates by 90 per cent and enabling a life free from chronic pain and constant fear of the next bleed,” Dr. Kaul said.Some progress is visible, as States like Karnataka, Kerala, Jammu and Kashmir, to name a few, have pioneered state-sponsored RRT programs.“It is now imperative to transition from mere crisis management toward implementing preventive care as a National Health priority,” Dr Kaul added. Hemophilia: The Need To Focus On Women Dr Rahul Bhargava, Principal Director & Chief - Hematology, Hemato-Oncology & Bone Marrow Transplant, Fortis Memorial Research Institute, Gurugram, stressed the importance of focusing the treatment on females.  "Carrier testing in hemophilia remains largely focused on affected males, while women who may be carriers are often not included in routine screening,” Dr Bhargava told HealthandMe.  As an X-linked inherited disorder, hemophilia can present in women with low clotting factor levels, leading to prolonged bleeding, heavy menstrual cycles, complications during surgery and childbirth.  Most of the cases remain undiagnosed until a clinical event occurs.  "Identifying carriers through timely testing enables appropriate counselling and informed reproductive decisions. It also supports early diagnosis in families and reduces the risk of severe bleeding complications in future generations,” the doctor said.How To Manage Hemophilia?Dr Tulika Seth, Professor of Haematology at All India Institute of Medical Sciences (AIIMS) in New Delhi, in a post on social media platform X, stressed the importance of testing for hemophilia.  "If a child gets prolonged bleeding from a minor cut or injury, or if there are spontaneous painful swellings in the joints after minor falls, or sometimes even by somebody holding the baby, or there's a lot of bruising, people should get the baby tested or the adult tested for hemophilia," Dr. Seth said.She noted that in mild cases of hemophilia, sometimes a person may not be aware that they have a deficiency, and then when they go for a tooth extraction or any surgery, they may have a problem. "So, it's important to know your family history, and if you've had any prolonged bleeding after any pain, then you should tell your doctor and get tested," the doctor said. Dr Bhargava also called for a broader approach that includes women in screening programs to help strengthen prevention and long-term management of hemophilia across families.  Hemophilia management requires attention beyond hospital care to prevent long-term complications. To reduce bleeding episodes, it is important to:regularly follow up, adhere to treatment, maintain joint health. Other measures include safe physical activity, balanced nutrition, avoiding trauma "Integrating medical treatment with lifestyle practices supports functional independence and improves overall disease control,” Dr. Bhargava told HealthandMe.