This is part of “More than a Number”, which Outrage Magazine launched on March 1, 2013 to give a human face to those infected and affected by the Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) in the Philippines, what it considers as “an attempt to tell the stories of those whose lives have been touched by HIV and AIDS”. More information about (or – for that matter – to be included in) “More than a Number”, email email@example.com; or call (+63) 9287854244, (+63) 9157972229 and (+632) 536-7886.
On December 1, 2013, @Mike_Fozz decided to take the HIV test, just as the world observed the annual World Aids Day, by going to the now closed RITM satellite clinic in Malate, Manila.
“I always had myself tested even before (that),” he recalled, “and I (was) very confident with my HIV-negative status.”
But he recalled prior to getting tested that day that – in the third week of November 2012 – “I met someone and we engaged into a ‘No Strings Attached’/‘Friends with Benefits’ relationship. He’s guwapo, borta, makinis (handsome, muscular and had clear complexion) and looked perfectly fine and healthy. You wouldn’t think that he has (HIV). Every time we see each other, siyempre hindi nawawala ang (of course we always had) sex. And tried both protected and unprotected sex. We ended our NSA relationship in February of 2013.”
In the summer of 2013, “I started to have rashes on my skin. I thought it was just bungang araw (prickly heat) because of the very hot weather. But after a few days it turned out to be a chicken pox; I was so worried because it was my first time to have it.”
While he was getting treatment, @Mike_Fozz said he read every info about chicken pox. And then he came across one that stated that one of the causes of having chicken pox is a “weak immune system”.
“That was the time I started reading articles about HIV,” he recalled.
It also got him so scared that he stopped having sex from May to November of 2013.
Instead, because he said he already felt something happening in his body, he became a voracious reader on everything related to HIV. He planned to get tested, and “I needed to prepare myself for the result, whatever it may be.”
When his reactive result was given him, “nalungkot ako (I was sad), of course,” @Mike_Fozz recalled. “But life must go on.”
That very day, @Mike_Fozz said his way of looking changed. “I promised myself to be more positive in every aspect of life. Whatever negative thing is happening, as much as possible, I try to turn the situation into something positive.”
This is why “I became closer to my family,” he said. Also, “I became more focused on everything that I do. I also quit smoking; don’t party as often; and everyday, I make sure that I get eight hours or more of sleep. In short, I became more disciplined.”
@Mike_Fozz’s CD4 count was 403 when he was diagnosed to be HIV-positive, so he chose not to start his antiretroviral therapy immediately. But in June 2014, when his CD4 count went down to 356, he started his taking his ARVs immediately. With his regimen (Lamivudize, Zidovudine and Efaverinz; LZE), “thankfully, I did not experience any side effects,” he said. He was able to raise his CD4 count again, and he now has undetectable viral load.
“You just need to be committed,” he said. “Never skip and religiously take your meds and you’ll be fine.”
For @Mike_Fozz, the biggest challenge an HIV-positive person can experience is still “discrimination from our society,” he said. And so “I try to teach and educate (people) sa abot ng makakaya ko (to the extent of my capabilities). I tell them that today, PLHIVs can actually live normal lives; that you cannot get it by shaking hands hugging, kissing, and so on.”
He is glad, of course, that there are other PLHIVs who helped him go through life; on top of “the strength I get from my family”.
@Mike_Fozz actually had a chance to confront the person he suspected to have infected him. Right after his tests in RITM (his treatment hub), he created a faux Facebook account and looked for his ex-sexual partner. When he found him, he started chatting with the guy; but this time, he was upfront with him, asking him “saan ang treatment hub mo (where is your treatment hub)?”
The guy allegedly said “RITM”, and that he knew of his status since 2008, thereby confirming @Mike_Fozz’s suspicion.
And so he came out to the guy.
That guy was apologetic, claiming that he had undetectable viral load, so he didn’t know how he could have infected @Mike_Fozz.
Everything at that point became “he said, he said”, and “me, who committed to continue with my journey and just go on with my life, decided to just forgive him. Inisip ko na lang na hindi naman ako gagaling na kahit saktan or ipakulong ko pa siya (I thought that I won’t be cured if I hurt him or have him jailed).”
As an HIV-positive person, the best lesson @Mike_Fozz can teach others who are also HIV-positive is to fight on. “This is not the end. There are so many living proofs that there’s life after HIV,” he said. “Just learn to live a balanced life, live healthy, take your meds on time, listen to your doctor, love yourself, and believe me… you’ll be okay; we will be okay.”
And for HIV-negative people out there?
“Please stay negative,” @Mike_Fozz said. “Huwag makipagsapalaran sa isang gabing sarap (Don’t play with your life for fun for just one night). Think before you fuck!” (with Michael David C. Tan)
Follow @Mike_Fozz on Twitter.
Addressing perceived stigma about HIV preventive meds key to helping women at risk
While women make up nearly one in five of all new HIV infections, PrEP is largely underutilized by women who are at risk for infection and little is known about the role of stigma among women.
Stigma is an important contributor to the continued HIV epidemic in the United States. While pre-exposure prophylaxis (PrEP) is a medication that can be taken to prevent HIV infection, previous research has shown that a barrier preventing gay, bisexual and other men who have sex with men from using PrEP is fear that partners, family members or community members would believe that those who use PrEP are HIV infected. Less is known, however, about these factors among women.
While women make up nearly one in five of all new HIV infections, PrEP is largely underutilized by women who are at risk for infection and little is known about the role of stigma among women. A new study that includes a team from the University of Pennsylvania School of Nursing (Penn Nursing), the New York Blood Center, and The CUNY School of Medicine at the City College of New York advances scientific knowledge about how stigma about PrEP use may affect whether or not a woman at elevated risk for HIV infection is interested in starting PrEP.
“Advancing our understanding of factors that influence uptake of PrEP among women is a critical goal, given how significantly underutilized PrEP is among women at risk for HIV infection in the United States,” says Penn Nursing’s Anne M. Teitelman, PhD, FNP, FAAN, Associate Professor of Nursing, and one of the study’s investigators. Results of the study “PrEP Stigma, HIV Stigma, and Intention to Use PrEP Among Women in New York City and Philadelphia,” will be published in an upcoming issue of the journal Stigma and Health.
Funded by the National Institutes of Health, the study Just4Us Study surveyed 160 women aged 18-55 years in Philadelphia and New York City, cities which have high HIV infection rates. The researchers used a scale developed specifically for women that includes an item of particular sociohistorical importance to people of color, low-income women and other marginalized groups of women. Higher stigma about PrEP use, but not stigma about HIV, was significantly associated with lower intention to start PrEP among the women who participated in the study.
The study recommends different ways to design behavioral interventions that specifically address PrEP stigma among women. They include:
-Expand public messaging to increase PrEP awareness and knowledge among women; -Include messaging that addresses the role of PrEP stigma and challenges stereotyped beliefs about women PrEP users; and -Design interventions that integrate stigma reduction at the individual and community levels.
“The next steps to address this gap are to use these findings to guide intervention development and to rigorously evaluate these interventions,” said Teitelman.
Co-authors of the study include: Beryl A. Koblin, Bridgette M. Brawner, and Annet Davis, all of the University of Pennsylvania; Deepti Chittamuru, of the University of California Merced; Victoria Frye, of the City University of New York; and Hong Van Tieu, of the New York Blood Center.
Study pinpoints barriers to preventive care for people at high risk for HIV
Barriers include knowledge gaps and attitudinal roadblocks among providers and systems, and the placement of responsibility on the patient to request the service – even though it’s typically the role of health care providers to educate patients about preventive care, such as flu shots and cancer screenings.
Many high-risk people eligible for medication to prevent HIV infection face barriers to obtaining a prescription, according to research by University of Massachusetts Amherst psychologist Avy Skolnik.
Those barriers include knowledge gaps and attitudinal roadblocks among providers and systems, and the placement of responsibility on the patient to request the service – even though it’s typically the role of health care providers to educate patients about preventive care, such as flu shots and cancer screenings.
“This study points to a need for better HIV preventive care,” says Skolnik, lead author of the study published in the Journal of General Internal Medicine and staff psychologist for University Health Services. “Placing the burden on the patient is not quality care.”
For HIV-negative people, a single pill a day can reduce the risk of acquiring HIV by 99%, according to the National Institutes of Health. Skolnik points out that the Centers for Disease Control and Prevention estimates that up to 1.2 million people at risk for HIV could benefit from taking preventive medication known as PrEP (pre-exposure prophylaxis), but less than 6% are accessing it.
Along with colleagues from the Bedford VA Medical Center, Boston University, Case Western University, the VA Boston Healthcare System and the Cleveland Department of Veterans Affairs Medical Center, Skolnik conducted a targeted medical records review during his post-doctoral work at VA Bedford. The researchers wanted to explore possible barriers, in addition to financial, that would help explain the “modest” use of the PrEP pill.
In 2012, the Food and Drug Administration approved PrEP, which consists of emtricitabine/tenofovir, two antiretroviral drugs that are among those used to treat HIV infections. HIV is transmitted mainly through sex or sharing needles for intravenous drug injections.
Veterans constituted an ideal study group because in 2013 the Veterans Health Administration (VHA) agreed to cover the cost of PrEP, allowing researchers to study barriers beyond the financial issues that people with commercial insurance limits may face.
In a retrospective chart review, Skolnik and colleagues mined the medical records of 161 veterans who received PrEP at one of 90 low-, medium- or high-prescribing sites across the country. Some 97% were men whose primary HIV risk factor was having male sexual partners. Skolnik detected “implicit homophobic undertones” in some of the provider notes, such as, “Patient admits to same sex sexual relationship” and “I am not comfortable prescribing for this purpose.”
Other highlights of the findings:
- Patients initiated 94% of PrEP conversations, and 35% experienced delays in receiving PrEP ranging from six weeks to 16 months. “We thought that was striking,” Skolnik says. “Patients had to initiate the self-disclosure involved and also have that conversation multiple times. We don’t expect any other patient to have that level of persistence for any other preventive service.”
- Barriers to access were identified in more than 70% of cases. They included knowledge gaps about PrEP or the VHA system related to PrEP, confusion or disagreement about which provider (primary care or specialist) should prescribe PrEP and attitudes or stigma associated with PrEP.
- Married heterosexuals in monogamous relationships were least likely to experience access barriers.
The study used an algorithm to identify electronic records of patients who were prescribed PrEP. That leaves “two big question marks,” Skolnik says – the cases in which a provider recommended PrEP and the patient declined, and those in which patients asked for PrEP but dropped the matter when they encountered a barrier.
The researchers recommend increased access to PrEP in the primary care setting and educational initiatives to enhance providers’ knowledge about PrEP and address implicit bias to improve care, especially for LGBT veterans and veterans of color.
“The medication isn’t the solution for every patient,” Skolnik says, “but there are barriers to access that should be addressed.”
The study’s recommendations can be applied in other health care settings because the access barriers to PrEP identified inside the VHA are likely to exist in other health care delivery arenas, as well, Skolnik points out.
“These findings can inform targeted approaches that are needed to improve PrEP access to those at risk for HIV infection,” the study concludes.
Empowering people is the key to ending AIDS – UNAIDS
When people have the power to choose, to know, to thrive, to demand and to work together, lives are saved, injustices are prevented and dignity is restored.
A new report by UNAIDS, Power to the people, released in time for the observance of World AIDS Day 2019, shows that where people and communities living with and affected by HIV are engaged in decision-making and HIV service delivery, new infections decline and more people living with HIV gain access to treatment. When people have the power to choose, to know, to thrive, to demand and to work together, lives are saved, injustices are prevented and dignity is restored.
“When people and communities have power and agency, change happens,” said Winnie Byanyima, Executive Director of UNAIDS. “The solidarity of women, young people, gay men and other men who have sex with men, sex workers, people who use drugs and transgender people has transformed the AIDS epidemic—empowering them will end the epidemic.”
The report was launched in Kenya on 26 November by the Executive Director of UNAIDS, the Cabinet Secretary of Health of Kenya and community representatives. It shows that significant progress has been made, particularly in expanding access to treatment. As of mid-2019, an estimated 24.5 million of the 37.9 million people living with HIV were accessing treatment. As treatment roll-out continues, fewer people are dying of AIDS-related illnesses.
“The partnership between government and civil society, together with the meaningful involvement of communities, has allowed us to significantly reduce new HIV infections and AIDS-related deaths,” said Sicily Kariuki, Cabinet Secretary for Health in Kenya. “Communities are the very centre of the AIDS response and are critical to ending AIDS.”
Progress in reducing HIV infections, however, is mixed and 1.7 million people were newly infected with the virus in 2018. New HIV infections declined by 28% from 2010 to 2018 in eastern and southern Africa, the region most affected by HIV. In a promising sign, the incidence rate of HIV among adolescent girls and young women aged between 15 and 24 years in the region declined from 0.8% in 2010 to 0.5% in 2018, a 42% decline. However, young women and girls still bear the brunt of new HIV infections—four out of five new HIV infections among adolescents in sub-Saharan Africa are among girls.
Outside of eastern and southern Africa, new HIV infections have declined by only 4% since 2010. Of increasing concern is the rise of new HIV infections in some regions. The annual number of new HIV infections rose by 29% in eastern Europe and central Asia, by 10% in the Middle East and North Africa and by 7% in Latin America.
“In many parts of the world, significant progress has been made in reducing new HIV infections, reducing AIDS-related deaths and reducing discrimination, especially in eastern and southern Africa, but gender inequality and denial of human rights are leaving many people behind,” said Ms Byanyima. “Social injustices, inequality, denial of citizenship rights and stigma and discrimination are holding back progress against HIV and the Sustainable Development Goals.”
The report shows that when people and communities have power and agency, change happens. Communities have put rights-based, people-centred principles at the heart of HIV programmes, ensuring that AIDS responses tackle the inequalities and injustices that fuel the epidemic.
Women and girls are the backbone of care support in their families and communities, providing unpaid and often undervalued work in caring for children, the sick, the elderly and the disabled and underpinning fragile social support systems. This must change. The involvement and leadership of communities of women is vital in the response to HIV.
“As a community leader, I am able to relate to people and understand their background better than someone from the outside. I have been living openly with HIV for 25 years, so people come to me with their issues, such as HIV-related stigma, disclosure and adherence. I have never stepped back from this role as I am part of this community,” said Josephine Wanjiru, an HIV community activist in Kiandutu, Thika, Kenya.
The power to choose
Women and girls are demanding integrated contraception and HIV and sexually transmitted infection testing, prevention and care options. Almost 40% of adult women and 60% of adolescent girls (aged 15–19 years) in sub-Saharan Africa have unmet needs for modern contraception.
In several countries in sub-Saharan Africa, young women’s uptake of medicine to prevent HIV—pre-exposure prophylaxis (PrEP)—has been shown to be high in projects that integrate PrEP into youth-friendly health services and family planning clinics and when provision of PrEP is separated from treatment services.
Eleven million voluntary medical male circumcisions to prevent HIV have been performed since 2016, 4 million in 2018 alone in the 15 priority countries.
The power to know
The power to know allows people to keep themselves free from HIV or, if living with the virus, keep healthy. However, people are finding out their HIV status too late, sometimes years after they became infected, leading to a delay in starting treatment and facilitating HIV transmission. In Mozambique, for example, the average time for diagnosis after infection for men was four years.
Adherence to effective treatment suppresses the virus to undetectable levels, keeping people healthy and preventing transmission of the virus. Knowing this allows people living with HIV the opportunity to lead normal lives, confident that they are protecting their loved ones, and confronting stigma and discrimination.
HIV self-testing is now helping more people to find out their HIV status in privacy, breaking the barriers of stigma and discrimination and facilitating linkage to treatment.
Knowledge of HIV among young people is alarmingly low in many regions. In countries with recently available survey data, just 23% of young women (aged 15–24 years) and 29% of young men (aged 15–24 years) have comprehensive and correct knowledge of HIV. Studies show that comprehensive sexuality education does not lead to increased sexual activity, sexual risk-taking or higher infection rates for HIV or other sexually transmitted infections.
The power to thrive
The power to thrive is ensuring that people have the right to health, education, work and a standard of living adequate for health and well-being.
New HIV infections among children have declined by 41% since 2010 and nearly 82% of pregnant women living with HIV are on antiretroviral therapy. However, thousands of children are falling between the cracks. Half of all children born with HIV who are not diagnosed early will die before their second birthday, but, globally, only 59% of HIV-exposed children were tested before two months of age.
In 2018, 160 000 children (aged 0–14 years) became newly infected with HIV, and 100 000 children died from an AIDS-related illness. They died either because they weren’t diagnosed, or because of a lack of treatment—a shocking indictment of how children are being left behind.
Gender inequalities, patriarchal norms and practices, violence, discrimination, other rights violations and limited access to sexual and reproductive health services exacerbate the risk of HIV infection among adolescent girls and young women, particularly in sub-Saharan Africa. Each week, an estimated 6000 young women (aged 15–24 years) are infected with HIV.
In Eswatini, a recent study showed that adolescent girls and young women who experienced gender-based violence were 1.6 times more likely to acquire HIV than those who did not. The same study also showed that the economic empowerment of women and girls helped in reducing new HIV infections among women by more than 25% and increased the probability of young women and girls going back to school and finishing their education.
Key populations are being left behind
Key populations and their partners account for at least 75% of new HIV infections outside of sub-Saharan Africa and are less likely to be on treatment than others. More than one third of key populations do not know their HIV status. Community-led support among gay men and other men who have sex with men is effective in increasing the uptake of PrEP, promoting safer sex, increasing HIV testing rates and supporting treatment adherence.
Transgender people are subjected to discrimination in every sphere of life, including education and employment—only 10% work in the formal economy. But community activism has led to long overdue attention to the rights and realities of transgender people.
Some studies have shown that community empowerment activities among sex workers can increase condom use with clients by three times and reduce HIV infection by more than 30%.
The power to demand
The power to demand gives communities and individuals the power to participate in the decisions that affect them. There have been reports of crackdowns, restrictions and even attacks on groups and campaigns supporting key populations. Some governments refuse to recognize, support or engage community organizations in their national responses to HIV and are subsequently missing out on their enormous potential to reach the people most affected by HIV.
People and communities will end AIDS
The work of community-led organizations is unique and powerful and can have a substantial impact on how the world fairs towards ending AIDS. UNAIDS urges all countries to fully support and enable their community-led organizations, ensure they have a seat at all decision-making tables concerning the health and well-being of their community members and remove any barriers to their active engagement in the response to HIV. Only by fully funding and fully supporting the work of community organizations will the end of AIDS become a reality.
Sex workers’ preferences for HIV prevention center on convenience
Majority of sex workers preferred to receive the HIV-prevention medication at family planning clinics or non-governmental drop-in centers – not at mobile health clinics near where they live or work.
Preventing HIV in sex workers is a powerful tool in lowering the worldwide burden of the disease, and a new study could help ensure that high-risk women take advantage of medical safeguards.
Researchers studying HIV in Malawi knew that the drug PrEP (pre-exposure prophylaxis) could prevent infections among female sex workers and their sex partners, but they wanted to know how best to get them the medication and encourage them to use it. So they asked the women themselves.
The women in the study said that the most important considerations for them were the location where they’d receive the medication and the additional services they could receive during those appointments. In particular, they were interested in cervical cancer screenings.
In terms of location, the majority of sex workers preferred to receive the HIV-prevention medication at family planning clinics or non-governmental drop-in centers – not at mobile health clinics near where they live or work.
“We really need to think about integrating care for women, providing them these services at locations where they already feel comfortable and can receive other essential health care,” said lead researcher Kathryn Lancaster, an assistant professor in Ohio State’s College of Public Health. The study appears in the journal AIDS and Behavior.
PrEP, a daily oral regimen of medication, reduces the risk of getting HIV from sex by about 99 percent when taken as recommended, according to the Centers for Disease Control and Prevention.
“In Malawi, HIV infections have been on the decline in recent years with better education, testing and access to prevention. Nationally, about 10 percent of the population is infected, but about 70 percent of women who are sex workers are currently infected,” Lancaster said.
Barriers to treatment for active infections and to prevention for those who aren’t already HIV-positive are significant for those who are poor and working in a stigmatized, yet legal, field in Malawi, she said.
“There’s an inherent imbalance in power in these transactions. And the women often find themselves forced into sex or may be paid more for having unprotected sex,” Lancaster said.
That makes PrEP an especially important tool because it is something women can use to protect themselves without their sexual partners’ cooperation. And more PrEP use among the workers would also mean fewer infected male customers.
In March of this year, the Malawi government OK’d use of PrEP specifically for sex workers, but there are no guidelines on how to make that happen, Lancaster said.
She’s hopeful that the information collected in this new study, which included 44 sex workers in eight focus groups, will guide programs aimed at preventing HIV infection among these women.
“Convenience was the main underlying factor for the sex workers’ preferences and it is important for the government and others interested in prevention to understand how to best serve the needs of the women they hope to protect,” Lancaster said.
“Currently, the best data we have shows that just a few hundred Malawi sex workers at best are on PrEP when there are thousands who could benefit. There’s so much good that could come of providing PrEP to these women, but if we don’t make it convenient for them, they’re not going to use it,” Lancaster said.
For instance, providing prevention care at a site that is specific to treatment for sexually transmitted infections could be a deterrent, she said.
“They preferred family planning clinics and I think that speaks to feeling more comfortable with receiving this care alongside a service they’re already using,” she said.
Along with convenient locations and extra health services, the women also said they preferred male health care providers and a setup where they would receive two months’ worth of PrEP at a time.
Other Ohio State researchers who worked on the study are Abigail Shoben and William Miller. Researchers from the University of North Carolina at Chapel Hill and the Harvard T.H. Chan School of Public Health also contributed to this work.
‘We need inclusive responses to HIV’ – Bahaghari Center
For Ms Disney Aguila, board member of Bahaghari Center, “it needs to be emphasized that HIV can only truly be dealt with if everyone is on board.”
In early 2019, Jay (not his real name), a Deaf gay man who lives outside Metro Manila, was encouraged by his friends who knew community-based HIV screening (CBS) to get himself tested. It was, he recalled, “the first time someone offered me this service; so I caved in.”
Jay was reactive; and “my world crumbled,” he said.
Though his friends tried to comfort him, telling him that knowing his status is good, “since at least now I can take steps to get treatment and live a normal, healthy life,” Jay wasn’t assuaged. His friends had to eventually go back to Metro Manila, and he worried that he would be left on his own to “find ways to access treatment.” And the same issue that did not make testing accessible for him – i.e. him being Deaf – is now the same issue he believed would hinder him from getting treatment, care and support (TCS).
Jay’s case, said Ms Disney Aguila, board member of the Bahaghari Center for SOGIE Research, Education and Advocacy Inc. (Bahaghari Center), highlights how “numerous sectors continue to be ignored in HIV-related responses.”
Aguila, the concurrent head of the Pinoy Deaf Rainbow, the pioneering organization for Deaf LGBTQIA Filipinos, added that “it needs to be emphasized – particularly today as #WAD2019 – that HIV can only truly be dealt with if everyone is on board.”
WORSENING HIV SITUATION
As reported by the HIV/AIDS & ART Registry of the Philippines (HARP) of the Department of Health (DOH), the Philippines has 35 new HIV cases every day. The figure has been consistently growing – from only one case every day in 2008, seven cases per day in 2011, 16 cases per day in 2014, and 32 cases per day in 2018.
In July, when HARP released its (delayed) latest figures, there were 1,111 newly confirmed HIV-positive individuals; this was 29% higher compared with the diagnosed cases (859) in the same period last year.
Perhaps what is worth noting, said Aguila, is the “absence in current responses of minority sectors” – e.g. when even data does not segregate people from minority sectors, thus the forced invisibility that used to also affect transgender people who were once lumped under the MSM (men who have sex with men) umbrella term.
For Aguila, this is “detrimental to the overall response re HIV because specific needs are not answered.”
DEAF IN FOCUS
In 2012, Bahaghari Center conducted “Talk to the Hand”, the first-of-its-kind study that looked at the knowledge, attitudes and related practices (KAP) of Deaf LGBT Filipinos on HIV and AIDS. The study had numerous disturbing findings.
To start, majority of the respondents (33 or 54.1%) were within the 19-24 age range at the time of the study, followed by those who are over 25 (21 or 34.3%). Most of them (53 of 61 Deaf respondents) had sex before they reached 18. Many (36.1%) of them also had numerous sexual partners, with some respondents having as many as 20 sex partners in a month.
Only 21 (34.4%) use condoms, and – worryingly – even among those who used condoms, 12 (19.7%) had condom breakage during sex because of improper use.
Perhaps the unsafe sexual practice should not be surprising, considering that not even half (29, 47.5%) of the respondents heard of HIV and AIDS, with even less that number (23, 37.7%) knowing someone who died of HIV or AIDS-related complications. And with not even half of the total respondents (29) familiar with HIV and AIDS, not surprisingly, only 19 (31.1%) considered HIV and AIDS as serious, with more of them considering HIV and AIDS as not serious (20, 32.8%) or maybe serious (22, 36.1%).
The study also noted that the level of general knowledge about HIV and AIDS is low, with 40 (65.6%) of them falling in this category. Only about 1/5 of them (12, 19.7%) had high level of knowledge about HIV and AIDS. Even fewer (9, 14.8%) may be classified as having moderate knowledge level.
For the Deaf community, at least, accessing testing and – if one tested HIV positive – the TCS is challenging because “we’d need Filipino Sign Language (FSL) interpreters who can help make sure we’re getting the right information/treatment/et cetera, Aguila said. And in the Philippines, the numbers of service providers who know FSL remain very limited.
Already there are Deaf Filipinos trained to conduct CBS particularly for other Deaf Filipinos – here in “Stop HIV Together“, a photo campaign stressing the need for inclusion.
INCLUDING OTHER MINORITIES
Aguila stressed that forced invisibility, obviously, does not only affect the minority Deaf community as far as HIV-related responses are concerned – e.g. “other persons with disability continue not to have HIV-related interventions,” she said.
For Aguila: “To truly stop HIV and AIDS, we need to be inclusive.”
Back in the city south of Metro Manila, Jay was forwarded to a counselor who knows FSL so that he can be supported in accessing TCS. Even that was “problematic,” said Jay, because “I was ‘forced’ to come out to someone I didn’t necessarily want to disclose my status only because I had no choice.”
For him, this highlights “how we just have to make do with what’s there; and there really isn’t much that’s there to begin with.”
He feels “lighter” now, however, having started his antiretroviral treatment (ART). But he knows he’s one of the “lucky people with contacts”; and that “not every one has access to the same support I had… and that’s something we need to deal with.”
HIV infection may raise risk for sudden cardiac death – study
The take-home message to patients and providers at this time is that it’s still most important to treat early and control HIV infection with antiretroviral therapies, stick to therapy and continue to monitor virus levels.
The success of antiretroviral therapies has extended the lives of people living with HIV, long enough for other chronic health conditions to emerge, including a recently documented uptick in sudden death. Now, in a study comparing medical information and portable EKG patch data from men living with HIV to men without it, Johns Hopkins Medicine researchers and collaborators report they have found more variability of the electrical “reset” period between heartbeats — known as the QT interval — in men living with the virus, which may contribute to the increased risk of sudden cardiac deaths.
A report on the findings was published online Nov. 11 in the journal Circulation and presented Nov. 17 at the annual American Heart Association Scientific Sessions meeting in Philadelphia, Pennsylvania.
“The take-home message to patients and providers at this time is that it’s still most important to treat early and control HIV infection with antiretroviral therapies, stick to therapy and continue to monitor virus levels,” says lead author Amir Heravi, a medical student at the Johns Hopkins University School of Medicine. “Also, people should work to reduce traditional cardiovascular disease risk factors by following a healthy diet, keeping fit, quitting smoking and treating diabetes to compensate for any additional burden of HIV on the heart.”
The researchers say, if further studies confirm and extend their findings, physicians may eventually be able to use this measure of erratic electrical activity in the heart to more precisely assess a person’s risk for sudden cardiac death, and identify ways to intervene to hopefully limit or stop risk.
According to Heravi, the increase in sudden cardiac death in people living with HIV was first substantially documented in 2012 in an HIV clinic in the San Francisco Bay area, but the biological roots of the increase have remained unclear. In a bid to learn more, the Johns Hopkins researchers used data collected from the National Institutes of Health Multicenter AIDS Cohort Study (MACS), an ongoing 30-year study that follows the health of gay and bisexual men from four US cities. Specifically, they focused on medical information gathered from 534 men without HIV infection, and 589 men living with HIV, of whom 83% had undetectable levels of the virus in their blood as a result of antiretroviral therapy. Some 61% of the men self-identified as white, 25% as African American and 14% as Hispanic or “other.” Participants were an average age of 57, and those with HIV had been treated for the disease for approximately 13 years.
Each participant wore a portable electrocardiogram (ECG) “patch” device to continuously measure heart rhythms. The researchers analyzed 3-4 days of data on the intervals between beats, when the electrical signals that drive heart rhythms are not firing. This electrical relaxation phase, during which the heart is preparing to send another pulse for a new beat is known as the QT interval. Variations in the length of time of the QT interval between each heartbeat in each person are well documented, and greater variation is known to increase risk for abnormal and sometimes fatal heart rhythms.
The researchers used a calculation that takes into account the heart rate and the QT interval ultimately to calculate the QT interval variability. Although a universal threshold between healthy and unhealthy levels hasn’t yet been adopted, it’s generally accepted that higher values translate to more heart disease and higher risk, the researchers say. They found that compared to men without HIV, men with HIV had a more variable QT interval, 0.077 greater than what would be expected for their heart rate variability. Moreover, they found this variability was also linked to the amount of virus each man carried, as measured with a blood test. The men living with HIV, but with undetectable HIV virus had an average QT interval variability of just 0.064 greater than men without HIV, whereas men with higher levels of virus had an average of 0.150 greater QT interval variability.
None of the participants experienced sudden cardiac death during the short study period. “As far as we know, our study looked at QT interval data measured during a longer period than any other,” says senior study report author Katherine Wu, M.D., an associate professor of medicine at the Johns Hopkins University School of Medicine. “This was thanks to the availability of the new portable ECG patches that we could now record and analyze the heartbeats long enough to detect these changes that were associated with HIV infection.”
Next, the team compared information in ways that might show how strongly the HIV link is to the QT interval variation compared to other risk factors for cardiovascular disease, such as high blood pressure, opioid use, high cholesterol levels, obesity, smoking and diabetes. Overall, they say, the data suggest that the extent of abnormal electrical relaxation variation in the heart in men living with HIV infection was comparable to that of 8 years of aging in those without detectable virus in the blood and close to 20 years of aging in those with detectable virus.
“Living with HIV with detectable virus was linked to a larger effect on QT interval variation than any other cardiovascular disease risk factor included in the study, except for diabetes,” says Wendy Post, M.D., M.S., another senior study author and professor of medicine at the Johns Hopkins University School of Medicine.
Separately, the researchers collected blood samples from the participants and analyzed them for known inflammatory molecules. They found that men with HIV had 14% more of the inflammation marker IL-6, and 22% more sCD163 compared with men who didn’t have HIV. They found these higher levels of inflammation were also associated with more QT variability and arrhythmia risk. As men living with HIV are known to have higher levels of inflammation, the researchers say, this finding could explain how HIV infection and the electrical system of the heart may be connected.
“HIV puts people in a state of chronic heightened inflammation and that might be a major contributor to why the heart is prone to abnormal rhythms,” says Heravi. “However, inflammation would only partly explain our findings and our results showed even after adjusting for effects of inflammation, HIV infection was associated with higher QT variability. We think it may be a combination of the virus and the body’s reaction to the virus via inflammation that ultimately contributes to an increased risk of sudden cardiac death.”
Other authors on the paper include Lacey Etzkorn, Jacek Urbanek, Ciprian Crainiceanu, Naresh M. Punjabi, Hiroshi Ashikaga, Todd Brown, Gypsyamber D’Souza and Ronald Berger of Johns Hopkins; Matthew Budoff of Harbor UCLA Medical Center; Jared Magnani of University of Pittsburgh; and Frank Palella Jr. of Northwestern University.