Human T-cell leukemia virus type 1

Human T-cell leukemia virus, type 1 (HTLV-1) occurs when a person is infected by the human T-cell leukemia retrovirus. HTLV-1 is spread by blood transfusions, sexual contact and sharing needles. It can also be spread from mother to child during birth or breast-feeding. It is unclear why some people with HTLV-1 develop adult T-cell leukemia (ATL), HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) or other medical conditions, while others remain asymptomatic (show no signs or symptoms) their entire lives.

Human T-cell leukemia virus, type 1 (HTLV-1) is usually diagnosed based on blood tests that detect antibodies to the virus. However, HTLV-1 is often never suspected or diagnosed since most people (95%) never develop any signs or symptoms of the infection. Diagnosis may occur during screening for blood donation, testing performed due to a family history of the infection, or a work-up for an HTLV-1-associated condition such as adult T-cell leukemia (ATL) or HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP).

The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. To find trials enrolling people with HAM/TSP, click here. After you click on a study, review its "eligibility" criteria to determine its appropriateness. Use the study’s contact information to learn more. Check the ClinicalTrials.gov Web site often for regular updates.

If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials by clicking here.

A tutorial about clinical trials that can also help answer your questions can be found at the following link from the National Library of Medicine:
http://www.nlm.nih.gov/medlineplus/tutorials/clinicaltrials/htm/video.htm

Ninety-five percent of people with human T-cell leukemia virus, type 1 (HTLV-1) never have any signs of symptoms of the infection and do not go on to develop medical problems.

Approximately 2 to 5% of infected people will develop adult T-cell leukemia (ATL). Depending on the subtype of ATL, people usually live an average of 6 months to 2 years following diagnosis. Although chemotherapy can produce a complete remission, it does not alter the life expectancy.

About .25 to 2% of people with HTLV-1 infection will develop HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP). People with HAP/TSP are often unable to walk unassisted within 10 years of onset and need to use a wheelchair within 21 years.

No cure or treatment exists for human T-cell leukemia virus, type 1 (HTLV-1). Management is focused on early detection and preventing the spread of HTLV-1 to others. Screening blood doners, promoting safe sex and discouraging needle sharing can decrease the number of new infections. Mother-to-child transmission can be reduced by screening pregnant women so infected mothers can avoid breastfeeding.

Oh U, Jacobson S. Treatment of HTLV-I-associated myelopathy/tropical spastic paraparesis: toward rational targeted therapy. Neurol Clin. 2008 Aug;26(3):781-97, ix-x.