Upon arriving home after years of working abroad, Elena Felix didn’t hug her grandchildren. She said she couldn’t. “How could I? I have AIDS. I might infect the kids if I do that.”
But her eldest child who had a baby asked her to hold and hug the infant, explaining to her that she knew and understood the condition and that it is not transmitted by mere physical touch. It occurred to her that denial was not the solution, that she was instigating stigma on herself. “From then on, I started hugging and kissing my children and grandchildren again,” she said. Her eldest was only 18 then, and as communication technology and the internet beckoned, the teen educated herself from stuff online. This made disclosure a lot easier for Elena.
Elena was diagnosed in late 1994 during a routine medical checkup while at work in the Middle East. After she was told that she had a “slight virus” and was declared “unfit to work,” she was asked to go home and find an institution to look after her.
In the Philippines, she was referred to the Research Institute for Tropical Medicine, the medical research body of the Department of Health (DOH), which was then only a few years into AIDS research.
In the mid-1990s, the country was also still beginning to know about the human immunodeficiency virus (HIV), which is transmitted when body fluids such as blood or semen, enters another person’s body either through sexual contact, sharing of contaminated needles, transfusion of HIV-infected blood or through an infected pregnant mother to her child.
During that time, persons with HIV had difficulty accessing antiretroviral (ARV) medication that slows down HIV infection to Acquired Immune Deficiency Syndrome (AIDS), the condition with no known cure yet that destroys the human body’s immunity or natural defense to fight off all kinds of infections.
During counseling, Elena was told that she will only have five to 10 years to live.
Elena’s story is as conventional as every Filipino woman’s struggle to survive while tending to a family and while being weighed down by social norms that make them even more vulnerable to harm. A high school graduate who married at 18 in 1978 and bore four children to a drunkard husband who hit her, she looked at overseas employment as a means to provide for her children. It was also her way to escape a life of domestic violence.
She left for the first time in 1987. She has worked in Doha, Qatar, then in Oman and Dubai. It was also in the Middle East where she had an affair with a foreign man, by the time she was already separated from her husband. She contracted the virus from this man.
In Doha, she worked as a cut-and-sew employee in a boutique. She also wanted to learn how to draw so she stole designs and traced them out. In Oman, she handled a finance job while still being self-taught in dressmaking. It paid off because in Dubai, she became a pattern maker, already called a “master” overseeing the designs.
Her initiation into sewing began in La Loma, Quezon City while attending a community development center for indigents. The nuns who supported the center helped her acquire skills by teaching her how to sew sacks used for chicken feed.
She continued sewing clothes as she could no longer go overseas due to her condition. The routine burned her out so she gave it up for a time, but she regained her motivation when physicians asked her to make them lab gowns and other clothes. “When I put clothes on the mannequin, I became hopeful,” she said.
Today, Elena has her own couture business while nurturing her four children and 10 grandchildren. And 24 years after she was given only 10 years or less to live, she never felt as vibrant.
She keeps herself busy as one of the organizers of the Association of Positive Women Advocates Inc. (APWAI), a support and advocacy group for women living with HIV. The organization consists mainly of the women who regrouped after an earlier support organization, Babae Plus, was dissolved.
“My focus now is advocacy,” said Elena. APWAI, a registered office based in Pasay City, has been accredited as part of the city’s service delivery network (SDN), a coordinated network of health providers and facilities that offer healthcare; the SDN for HIV is capacitated to offer even non-health services such as counseling and referrals.
As local governments now have an increased role in addressing the rapid virus transmission, Elena said she wants to push women’s capacities in the local government units (LGUs). As SDN for HIV, the APWAI can use its pool of trained peer educators and community based screening motivators who counsel and inspire women to undergo HIV blood screening.
She still hears the words “sakit na nakukuha sa babae or sakit sa babae” when people describe sexually transmitted infections such as HIV. While the trend of infection has shifted in the Philippines from female sex workers and overseas workers to men who have sex with men (MSM), Elena said women remain at the receiving end of the infection chain.
In her counseling work, women who get reactive or positive blood tests are wives and partners of MSM. This is the case of women in Cebu that has a concentrated population of people who share needles to inject drugs. This is also the reality in Metro Manila where the bulk of newly-diagnosed women are in relationships with men who have sexual contact with other men. She notes this across all professions and largely among the sector of public transport drivers who engage in this sexual activity to augment their income.
“When we say women, there are children. So when we talk about women living with HIV, there are children living with HIV,” she said. “We have multiple worries because the burden is on women; they work and still have to care for their children.”
A daily regimen of HIV-positive women with their HIV-infected children is administering ARV medication, which does not have a liquid form for infants and children. “We teach mothers to learn how to crush the tablet, put it in milk, water or any drink,” she said. Some busy mothers go to a drugstore to have the tablet crushed by a pharmacist for PhP30.
She said the cycle for infected and affected family members goes on, citing infected children who are now adolescents and young adults, including one who just graduated from college whose mom died and so, she’s the breadwinner and has to send her younger siblings to school.
Elena said her organization also wants to campaign for birthing facilities for pregnant women to have normal deliveries, as there is a new World Health Organization guideline that allows normal delivery to a woman for as long as she is on ARV and a high CD4 count a month before her due date.
The CD4 count is the amount of blood cells that fight infection. The normal range is at 500 and above. A CD4 count that drops below 200 means a person has AIDS. The ARV medication controls HIV infection from progressing into AIDS.
However, Elena said her group has to have more meetings with the Philippine Obstetrics and Gynecological Society that maintains guidelines allowing deliveries for women with HIV only through caesarian section, which is more costly.
Stigma and discrimination, the factor that prevents persons from disclosing their medical status even to spouses, family and friends, still persists. She recalled a colleague whose family sprayed insecticide all over the house as soon as she was driven away.
Elena wants health workers who are at the frontline of health care to be educated, as she was once initially denied surgery for myoma after she disclosed her HIV status to the surgical team and after she was identified publicly in the medical facility.
She said the DOH has invited APWAI to be one of its national partners in its advocacy. The partnership aims to do a profile and study of women living with HIV and identify specific support strategies. Women with HIV are also part of the working group that will craft the implementing rules and regulations of the new HIV Policy Act of 2018.
Elena herself was instrumental for the support Sen. Manny Pacquiao gave to the new HIV law. After a Senate deliberation on the bill, she said she chased the senator and briefly talked to him, identified herself as a person living with HIV and conveyed her concerns and the importance of the bill.
She said it was her first time to hear about lobbying, but she thought that she has been lobbying, campaigning and advocating all this time.
Elena came out publicly in 2010. One time, she said she brought her six-year-old grandchild in an event where she was interviewed by media as she was the lone female among the speakers. “He asked me, ‘Bakit andaming bading dito? Bading ka rin ba?’ I took the time to answer his innocent question,” she said, noting that women are unknowingly also at the forefront of an information campaign.
“Once a child starts asking questions, you have to answer. Now, I’m waiting for my younger grandchildren to have the same experience. The youngest is three. What will the kid ask me? I’m ready to answer,” she said.
Photos from Elena Felix’s FB page.