What is HTLV-1, a little-known virus that reaches more than 800,000 Brazilians?

As a 31-year-old student of theology, Erika Grace Piva Archanjo stumbled and fell frequently, an accident that she and her family attributed to an orthopedic problem. She has never been to the doctor because of this. He only did that, at the age of 25, after feeling weak in the legs and realized that to get up, after getting down, he needed to put his hands on floor.

The diagnosis was made only a year later, when her first child was one year old: Erika suffered from tropical spastic paraparesis which, over time, paralyzed and invalidated some people.

This is a little known disease caused by the human T-cell lymphotropic virus (HTLV-1), of which Brazil is one of the absolute numbers in the world. less than 800,000 infected – up to 2.5 million, depending on the source. In the world, it is estimated that between 10 and 15 million people.

He is part of the family of retroviruses – the first of this group to be discovered in 1980 – the same as his most popular cousin, HIV, who causes AIDS.

"It integrates with our DNA and can be transmitted," says Jorge Cbadeb, physician at the HTLV outpatient clinic and professor at the Institute of Tropical Medicine at the University of São Paulo (USP).

Symptoms and Consequences

Usually, the virus is embedded in the DNA of its carriers. But in 5 to 10% of those infected, it can cause two diseases: HTLV-1-badociated myelopathy or tropical spastic paraparesis (HAM / TSP), and adult T-cell leukemia / lymphoma (ATLL), a type of very aggressive blood cancer that causes the death of the patient within two years.

"Over time, the patient may be unable to walk," says Adele Caterino de Araujo, researcher at the Immunology Center at the Adolfo Lutz Institute.

"Over time, symptoms such as lower back pain, fatigue, urinary and badual dysfunction (erectile dysfunction, loss of libido), cramps, intestinal constipation, myalgia (muscle pain) and uveitis (inflammation dermatitis and emotional order such as anxiety and depression. "

Erika knows what Adele is talking about

" I had a phase of incontinence and I hardly left home When I took a medicine, it helped me, but it made me groggy, "he says.

" I started treatment with pulse therapy [terapia baseada em doses elevadas de corticoides por via endovenosa, durante um curto período de tempo] three times a month, going back and forth from the Hospital, but even worse, the uncontrollable pain that the HTLV causes or the re drug action. "

But that's not all.

"In addition to weakness, urinary incontinence and pain, the emotional side becomes extremely fragile, very crying, very sad, very angry," says Erika. I fought with my father because he and his mother used drugs and AIDS (she died 24 years ago). After all, he was co-author of this crime, since he was among them, I had to take the HTLV-1 and I was afraid of losing my husband, who would have been a crazy person. Wheelchair? "People have generally made me angry, angry and arrogant."

According to Adele, HTLV-1 acts preferentially on CD4 + T cells (major cells of the immune system) and can remain inserted into their DNA as a provirus (latent state in which the retrovirus RNA is found after incorporation into DNA). of the host cell).

"He needs cell-to-cell contact to spread, so that transmission through free particles in the blood is virtually non-existent or ineffective," he says. "As the proviral burden of HTLV-1 is low, the proliferation of infected cells is what promotes the spread of the virus in the body." can be delayed. The estimated average time between HTLV-1 infection and the development of the disease is long and is usually around the fourth decade of life. The infected individual may remain only asymptomatic carrier.

"According to reports, about 5% of infected people develop diseases, but these data seem to be underestimated, as more than 20% of patients in Brazil develop a condition badociated with them," notes Adele.

Despite these numbers and the problems they cause to people who develop. diseases, HTLV-1 receives little attention in Brazil and even in the world. Doctors and researchers who work with him complain about the lack of structure and the lack of specific actions against the virus. There is no national program to try to control or eradicate it.

"There is no cure for the diseases it causes, but insufficient attention has been paid to these diseases and they are not even listed in the list of diseases neglected by the World Organization of health, "explains Adele. The vast majority of asymptomatic patients is one of the reasons why HTLV-1 does not receive the required attention. In evolutionary terms, it is an old virus, it is well adapted and most people do not develop the most serious complications because the patient's immune system controls it.

In most cases, porters do not even know or know. are infected.

"They have trouble climbing the stairs, a pain, but who's going to see the doctor because of that?", Asks Cbadeb. "When on the one hand, X-rays, CT scans, MRI scans and usually the results are normal, it happens that the person spends seven or even ten years discovering the cause of these symptoms."

The lack of knowledge of HTLV-1 by health professionals themselves is another problem that contributes to the long interval between onset of symptoms of diagnosis. For example, Cbadeb reports the case of a patient from inside São Paulo, who consulted 29 doctors until she found one who was living in the HTLV outpatient clinic from Emílio Ribas hospital and knew the virus well.

"He asked for the serology [exame de laboratório realizado para comprovar a presença de anticorpos no sangue] which costs about 3 reais, and the result was positive," he said. "But if you do not think and do not ask for the exam, you can not identify the infection caused by it."

In order to inform and mobilize society and public authorities about the meaning of infection caused by the first described human retrovirus, the International Association of Retrovirology (IRVA) instituted the 10 November the HTLV World Day.

In addition, in May of this year, doctors, researchers and patient representatives from around the world sent an open letter to the WHO asking for the creation of strategies for the eradication of the virus, in particular: more tests and more spread of the virus.

This is not impossible or difficult to achieve because the forms of virus transmission are well known. There are three types: parenteral (through blood transfusion and sharing contaminated needles and syringes when using licit and illicit injection drugs), badual (during bad without condoms) and vertical (through badfeeding). prolonged, during pregnancy and at the time of delivery).

"At the present time, the first channel of diffusion has decreased significantly in Brazil since it has become mandatory for HTLV serology in all blood banks in Brazil since 1993"

L & # 39; The importance of campaigns

The city of Nagasaki, Japan, is an example of an effective strategy to combat the transmission of the virus: steps have been taken to test pregnant women and help mothers HTLV-1 not to badfeed their children, or to do so for shorter periods – not more than six months. Thanks to this, it has been possible to reduce the prevalence of the disease from 20.3% to 2.5% in 20 years

According to Marina Lobato Martins, head of the Center for Scientific and Technical Development, Hemodynamics and hemotherapy of Minas Gerais. ), linked to the Minas Gerais State Health Secretariat, Brazil must take steps to prevent the number of carriers of HTLV-1 from continuing to increase.

"Any uncontrolled communicable disease can increase over time because infected people will continue to spread the virus to others," he warns.

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