World Hemophilia Day: More than 1.36 lakh people in India suffer from it; what is this rare disease

The bleeding is usually prolonged after minor traumas or dental extractions. (Sand art by Sudarsan Pattnaik, Sand Artist)

Hemophilia, a rare disease, having few but crucial cases has been a problem for long. In Indian context, more than 1,36,000 people have been diagnosed (by prevalence). The number is 1 in every 10,000 male births. Out of the total number, 19, 690 have been registered as Hem-A patients. At a time when the diagnosis rate of Hemophilia is as low as 13 per cent, spreading awareness on this becomes imperative. For this, April 17 is observed as World Hemophilia Day every year.

Understanding Hemophilia: What is it

You have seen that whenever a person is hurt and has a small cut, the person might bleed but that bleeding stops within 5 minutes. This is because the blood can clot at the point of injury preventing further bleeding. Now in this rare disorder, blood doesn’t clot normally as it lacks in blood-clotting proteins.

Now, what happens is, depending on the degree of deficiency, bleeding differs. Hemophilia can lead to bleeding from gums or heavy menstrual bleeding. The bleeding is usually prolonged after minor traumas or dental extractions. They can also present as prolonged bleeding post minor injuries or after dental extractions.

Treating Hemophilia

According to the US Centers for Disease Control and Prevention (CDC), blood clotting factor has to be replaced and it is the best way to treat hemophilia. It can be done by injecting treatment products, called clotting factor concentrates, into a person’s vein. “Clinicians typically prescribe treatment products for episodic care or prophylactic care. Episodic care is used to stop a patient’s bleeding episodes; prophylactic care is used to prevent bleeding episodes from occurring” said CDC.

However, it can be noted that the treatment comes with risks and challenges. Hemophilia Federation India (HFI) for long has been reaching out to People with Hemophilia(PwH) and providing quality care, education as well as making treatment for the disease affordable. There some Comprehensive Hemophilia Care centers as well that provide genetic diagnosis and with counselling and prenatal diagnosis.

Dr Sandeep Arora, Head of Medical Affairs, Takeda India, said, “Home care and therapy is currently not a normal practice in India. During the pandemic, some institutes supported and allowed home therapy, which proved instrumental in managing the disease. As we move forward in supporting patients and bringing value to them, along with considering home therapy, creating a standard protocol and guideline for treatment will further ensure high standards of care and sustained management of the disease.”

Hemophilia Awareness

The World Federation of Hemophilia has noted that the World Hemophilia Day is needed to bring the global bleeding disorders community together. The federation said that the COVID-19 pandemic can impact people with a bleeding disorder in a major way and therefore, its awareness has never been more important. The theme kept to mark this year’s World Hemophilia Day is Adapting to Change.

Accessibility to treatment centers and therapy, awareness regarding the disease among many stakeholders as well as quality factor availability are now some challenges, hemophilia ecosystem is dealing with especially during the Coronavirus outbreak, said Takeda in a release.