Treatment for hemophilia has improved greatly in recent decades. The life expectancy for people with hemophilia is now similar to that of the general population.

Most people with hemophilia are able to live full and normal lives with proper treatment. People with severe hemophilia are at the highest risk of serious bleeding.

The most common type of hemophilia is hemophilia A, which is due to a deficiency in a protein called blood clotting factor VIII. It affects about 1 in 5,000 males.

The next most common type is hemophilia B. This results from a deficiency in blood clotting factor IX.

You can manage both these types of hemophilia successfully with injections to replace the missing protein in your blood or gene therapy, which involves a one-time infusion. People with mild hemophilia may only require observation with no particular treatment if they don’t have symptoms.

In this article, we examine the life expectancy of people with hemophilia who receive or don’t receive treatment.

The outlook for people with hemophilia has improved significantly in recent decades since blood clotting factor infusions have become widely available.

These infusions involve regularly injecting a protein into your bloodstream to replace a protein your body lacks. The type of blood clotting factor you receive depends on your type of hemophilia.

The life expectancy of people treated for hemophilia continues to improve and is now approaching the life expectancy of the general population.

The all-cause death rate is about 19% higher for people with non-severe hemophilia than for people without hemophilia. This means that people with non-severe hemophilia have about a 19% higher chance of dying prematurely from any cause.

In a 2021 study in the Netherlands, researchers looked at the life expectancy of over 1,000 men with hemophilia from 2001 to 2018. About 87% of men had hemophilia A, and the rest had hemophilia B.

The severity of the disease of the people in the study broke down as follows:

SeverityHemophilia AHemophilia B

The researchers estimated that half of the men in their study would live to be 77, which is about 6 years lower than the general population of Dutch males.

During the 17-year follow-up period, 14% of people died. Of the people who died, half died before the age of 69.8, and the age at the time of death ranged from 16.4 to 98.0 years.

The life expectancy for people with severe hemophilia has improved to about 56.8 years.

People with mild hemophilia may have a normal or near-normal life span without treatment. People with severe hemophilia tend to have an extremely poor outlook without treatment.

Until the 1970s, the average life expectancy for people with hemophilia was 11 to 13 years. Now, people with severe hemophilia in developed countries have a normal life span if blood clotting factor therapy is started by age 1 to 2.

People in developing countries with hemophilia and without access to treatment have about twice the mortality rate of the general population.

The main causes of death for people with hemophilia are:

In the study from the Netherlands, the most common causes of death were:

It’s important to note that not all these causes of death were related to hemophilia.

The best way to treat hemophilia is usually by replacing the missing protein in your blood that impairs your blood’s ability to clot. This treatment is called blood clotting factor replacement therapy. It usually involves receiving regular intravenous (IV) infusions of your missing protein into one of your blood vessels over several hours.

In November 2022, the Food and Drug Administration (FDA) approved the first type of gene therapy for treating hemophilia B, called Hemgenix. Gene therapy involves receiving a one-time infusion of the genetic information your body needs to produce the missing protein. The genetic information is contained in a virus shell.

In June 2023, the FDA approved the first gene therapy for hemophilia A.

Extremely rarely, hemophilia can develop due to an autoimmune reaction. This condition is called acquired hemophilia. People with acquired hemophilia often need to take medications called bypass factors that allow their blood to clot without the missing protein. They may also need to take medications to stop the autoimmune reaction.

People with hemophilia live almost as long as people without hemophilia if it’s treated properly. People with very mild hemophilia may not need any treatment other than regular observation.

Severe hemophilia is usually treated by regularly injecting the missing protein into your blood. Recently, gene therapy has been FDA-approved for treating hemophilia A and B in the United States.

Gene therapy is a one-time injection that gives your body the instructions it needs to make the missing protein.