What is HTLV-1?

Human T-Lymphotropic Virus Type 1 (HTLV-1) is a retrovirus that infects human white blood cells. It can cause disease of the nervous system or leukemia.

Is this a new disease?

No. This disease was first described in 1980 and has been identified throughout the world.

HTLV-1 is more common in Japan and other countries in the Western Pacific region, the Caribbean, West Africa and South America. About 10 to 20 million people are infected worldwide. It is rare in Canada, but cases have been found in British Columbia and Nunavut.

How can I tell if I have HTLV-1?

Most people who have the virus will not get symptoms or develop any health problems.

About 1 in 20 people who get infected with HTLV-1 will eventually get sick with an HTLV-1-associated illness sometime in their lifetime. Illness does not usually occur until several decades after being infected.

People who get sick may develop a rare blood cancer called adult T-cell leukemia/lymphoma (ATLL), or have inflammation of the spinal cord that causes weakness of the legs, backache, loss of bladder control or constipation.

To confirm that you have HTLV-1, your health care provider may send you for a blood test.

How is the virus spread?

HTLV-1 is spread from an infected person to other people by:

• Sharing needles, syringes or other equipment used for injecting drugs
• Sexual contact. Evidence shows that the virus is spread more easily from a man to a woman, than from a woman to a man. The virus is also more common in people who are 40 years or older
• Giving birth or breastfeeding. About one quarter of mothers who are infected with HTLV-1 may transmit the virus to their babies at birth or through breastfeeding, especially if they breastfeed for 6 months or more

Should I breastfeed if I have HTLV-1?

If you are infected with HTLV-1 you should not breastfeed. Otherwise, breastfeeding is highly recommended. For more information on breastfeeding, see HealthLinkBC File #70 Breastfeeding.

How can I protect myself against infection from HTLV-1?

You can protect yourself from being infected with HTLV-1 by:

• Never sharing needles, syringes or other drug injection equipment
• Using a condom every time you have vaginal, anal or oral sex

HTLV-1 is not spread by ordinary, everyday household contact such as kissing, using the toilet or preparing food. In order for the disease to spread, there has to be blood-to-blood contact or unprotected sexual intercourse.

Is there any treatment for HTLV-1 infection?

There is currently no treatment that will get rid of the virus once you are infected. However, only about 5 percent of those who are infected develop any illness as a result of their infection. For those who do develop illnesses, such as ATLL, there are some treatments available.

Can I get HTLV-1 from blood transfusions?

Canadian Blood Services (formerly Canadian Red Cross) has been screening all blood donations for HTLV-1 since April 1990 and transmission of HTLV-1 by transfusion has been virtually eliminated in Canada.

Should I get tested?

No, unless you have a HTLV-1-associated illness for which your health care provider thinks testing is needed, or you have been in contact with a known case.