Alone in his rented room in Quezon City while the country grappled with the pandemic, Owie Franco at times missed taking his antiretroviral (ARV) medicine. He developed an infection and was not even aware of it.
Since March 2020, when the lockdown was first imposed following the outbreak of the coronavirus disease 2019 (COVID-19), he had already missed two years of his scheduled check-up at his treatment hub located at the other end of the metropolis.
“There was a time I failed to take the ARV twice in a week,” said Franco, who has been living with the human immunodeficiency virus (HIV) for 18 years.
“This poor adherence started in January and continued till the time I lost my job last May 2021,” he said, speaking in Filipino.
It was only this June that Franco managed to speak to his doctor at the Research Institute for Tropical Medicine (RITM). “It was then I realized that I had a lot of infections. I had a swollen hand and I thought it was normal,” he told VERA Files.
A converted COVID-19 referral center, the RITM is located about 40 kms from Franco’s home so he spoke to his doctor through the medical facility’s acquired immunodeficiency syndrome (AIDS) Research Group online teleconsultation.
He needed P10,000-worth of medical procedures: a chest X-ray, a viral load test, a creatinine test, a blood exam, a CALAS test, toxoplasma, a CD4 count test, and a CT scan.
But instead of waiting for another month to get a guarantee letter to cover these expenses, Franco paid for most of the urgent lab tests from his own savings.
He still needs to pay an additional P5000-bill for medicines. And on top of this, he needs to set aside an amount for transport so he can get to the facility that offered him a free CT scan ー Amang Rodriguez Hospital in Marikina, eight kilometers away from where he lives.
“Hindi ako pwedeng mag-commute kasi takot ako. Iyong kamay ko namamaga (I cannot commute because I am scared. My hand is swollen)” said Franco, who would need to take a cab to go to the hospital. Now he has colds and fever, which means more concerns to address.
Out-of-pocket expenses for long-distance travel to treatment facilities, restricted access to drugs and health monitoring, and strict border controls are just among the problems people living with HIV (PLHIV) continue to face while the country struggles against the pandemic.
Franco, president of Pinoy Plus Advocacy Philippines, a people’s organization of Filipinos living with HIV and AIDS, considers himself among the lucky ones who still have refills of ARV drugs and get follow-up medication.
Other members of Pinoy Plus, he said, do not even have the money to get a health check-up or enough supply of ARV to last them a month.
“Some PLHIV really have to stop taking it (ARV),” said Noemi Bayoneta-Leis, program manager of the TLF Sexuality, Health and Rights Educators Collective (TLF Share), adding these are not over-the-counter drugs.
“They cannot be bought in pharmacies like paracetamol. They come from treatment hubs, prescribed, and include counseling,” she said at the forum “The Stories and Challenges and Collective Actions of Filipino LGBTQI” during the Pink State of the Nation Address (SONA) 2021.
“Nalagay ang PLHIV sa intersection ng dalawang pandemya: ‘yung HIV at COVID. (The PLHIV were placed in the intersection of two pandemics: HIV and COVID).”
The Pink SONA, held on June 30, was the culminating virtual gathering for pride month with the theme “Sama-sama, Tuloy ang Laban.” It was attended by several grassroots organizations such as GALANG, Lakanbini Advocates Philippines, APCOM, and San Julian Pride, which also raised issues about unemployment, lack of financial aid, and the continuing discrimination against LGBTQI people.
Bayoneta-Leis emphasized that many PLHIV face a “double” or “triple whammy.”
“Kung bakla ka na at may HIV ka, double whammy na. Kung ikaw ay bakla pa, may HIV, at apektado pa ng COVID, triple whammy na,” (If you’re gay and with HIV, that’s a double whammy. If you’re gay with HIV and you are affected by COVID, that’s a triple whammy),” she said.
The ‘nearest’ HIV facilities are ‘too far’
Based on a March 2020 survey of 122 respondents by the United Nations Development Programme (UNDP) and UNAIDS, transportation and delivery, location of treatment hubs, checkpoints and crossing borders are the top concerns of PLHIV.
While those residing in Metro Manila are able to use transportation of local government units (LGUs) and courier delivery services, the survey found that for those outside the city, the nearest HIV facility is still “too far” — that means an average walking time of up to 10.7 hours.
Bayoneta-Leis said some PLHIV had to walk 50 or 70 kilometers just to obtain ARV drugs at a time when public transportation was not available. Some were fortunate they could borrow at least five capsules from a neighbor or a friend.
Other PLHIV, whose treatment hubs are not within the area of their residence, also fear being discriminated against at checkpoints.
“There is the worry that you might be revealing yourself … saying I am HIV-positive and that I need medicine because they (police) need to be convinced that I really need to go to Marikina,” Bayoneta-Leis said in Filipino.
For Franco, there is also the worry of contracting COVID-19 since PLHIV already have a compromised immune system.
“Even while we are under enhanced community quarantine (ECQ), the fear of getting the virus is still there, especially if the PLHIV have not been vaccinated. They could get the virus while travelling or entering a hospital,” he told VERA Files in Filipino.
PLHIV who are not taking antiretroviral treatment and have a low CD4 cell count are, in fact, “at increased risk of opportunistic infections and AIDS-related complications.” Those who fail to get follow-up treatment may develop worse infections, transmit the virus more easily, and even die, according to the World Health Organization (WHO).
In 2020, the Philippine Health Insurance Corporation (PhilHealth) issued an advisory that “alternative modes of delivery of ARVs, such as through courier or parcel services” be considered during the ECQ. It added that such cost of services “may be charged” to the PhilHealth Outpatient HIV/AIDS Treatment (OHAT) Package reimbursement.
Under the OHAT package of 2015, 80% shall be used for the delivery of required services including drugs, supplies and laboratory, and other necessary services.
Franco, however, lamented that this is not available in some treatment facilities and he suggested that there be clear guidelines on this so those who are supposed to benefit from this service can avail of it.
Community efforts to bring ARV drugs to PLHIV
Data from the Department of Health (DOH) in May 2021 showed that 50,198 PLHIV are on antiretroviral therapy (ART). In 2020, the HIV/AIDS and ART Registry of the Philippines recorded an average of 620 patients on ART initiation, which is a 27% decrease from the previous year.
The DOH has estimated a total of 133,900 PLHIV are expected by 2021, and of this, over 65,000 still need to be enrolled for ART.
In the face of limited access to these drugs, community groups found ways to reach out to PLHIV in emergency situations.
The TLF Share through The Global Fund, Save The Children, the UNAIDS, and UNDP deployed volunteers to deliver ARV drugs to PLHIV in Bulacan, Ilocos, La Union, Pampanga, and some provinces in Mindanao.
“It took us some time to process but in the end, it turned out well because it was approved by The Global Fund,” Bayoneta-Leis said. “They allowed us and asked how much we needed. What was important to us then was to be able to deliver the medicine in an orderly way.”
Meanwhile, The Red Whistle, a collaborative platform that supports those living with HIV and AIDS, collected online requests and mapped HIV and support facilities nationwide. Pinoy Plus Advocacy with TLF Share, Pilipinas Shell Foundation, and UNAIDS also has a response center for PLHIV open daily.
Bayoneta-Leis urged LGUs and regional health offices to strengthen their collaboration with civil society organizations to address the needs of PLHIV.
“The response of the community served as the catalyst for the government to also communicate with us. It feels good that we are being heard … the DOH also reallocated funds. That also brought hope,” she said.