Thursday, September 29, 2016

My HIV Story 2006-2016

In the past 10 years, HIV was around me. And in the last 3 years, many of them “disturbed” me, big time!

“Kuya, positive ako, should I disclose my HIV status in my scholarship application?” (A male friend in AIDS work)

“Kuya Zimm, please help, my friend is HIV positive. All of us, his friends, are in panic. We don’t know what to do.” (A gay friend who works in the IT industry)

“Peter, just so you know, I am HIV positive” (A college schoolmate whom I last met more than 20 years ago. He was a student leader. We found each other again only in social media)

“Kuya, some of my closest friends are HIV positive. My cousin also has it.” (A relative)

“Peter, urgent, please help my friend. He is HIV positive and he suspects his partner is also positive. Both of them are in the hospital.” (A female friend. A retired colleague in development work).

 “Pedz, puede ba kitang gawing HIV treatment partner? Alam mo namang wala na akong magulang at mga kapatid”. (A very close friend asking me to be his treatment partner. I knew him when we were both considering priesthood).

“Ter, wala gimisahan sa Pari ang namatay nga nanay. Asa man namo ni ilubong tawon? Aha man namo dalhon ang iyang mga anak?” (A religious brother in Visayas, asking support for the orphans and the mother who died of AIDS.)

“Akala ko sanay na ako”. (A tweet of a friend with HIV about his friends dying one by one)


AIDS work
In 2006, I joined UNAIDS armed with research and evaluation skills earned from my previous engagement in health and development work. I had managed national level surveys (with my colleagues in the religious community), spearheaded impact studies (determining impact of reproductive health and family planning interventions in several Philippine settings), led evaluation research (testing new solutions in tuberculosis prevention and control), designed health database systems optimizing online and information technology, among others.

At that time, an HIV case is reported only every other day or just around 300 for the entire year. Majority of those who got it was via sexual transmission, with two-thirds from unprotected male-to-female route or vice versa.

The main clamor at that time was to amend the then 8-year old AIDS law whose provisions needed to be revised to address the needs of the country - the annual AIDS appropriation needed to be increased because it was mainly for the operations funds of the Philippine National AIDS Council Secretariat (PNAC) to coordinate the national AIDS program; the structure and representation of PNAC needed to be expanded, optimized and/or equipped with full secretariat staff complement; the prevention policies needed to consider projected trends in transmission i.e. among overseas workers;  data collection, management and program evaluation were to be systematized, among others.

I was tasked to support the national stakeholders to enhance data collection on HIV, improve investigation and analysis, optimize existing estimation and projection tools to inform strategic and long term planning, and lastly to ensure the national HIV strategy is monitored and evaluated every 2 years for the country’s regular report to its 2001 United Nations Commitment to “halt and reverse” the HIV epidemic by 2015 (MDG Goal #6)

For me, HIV then was data. Each HIV case was a statistic.

A decade later, HIV to me has a flesh, a voice, a mind, has feelings.

I see HIV in the eyes of my 4 kids.

With more than 20 HIV cases reported daily (almost 1 every hour) by end of 2015 - a two-thousand fold increase from a decade ago - my 4 kids will certainly witness the impact of this epidemic on their formative years.

HIV is real. HIV is here.

Did we foresee this?
While the world is seeing breakthroughs in HIV prevention and treatment with many countries celebrating a decline in new HIV cases, the Philippines is going the opposite side.

The total reported cases in the past 30 years is still a tiny proportion (less than 1%) of the entire population, and the 102 million Filipinos can’t feel it.

But HIV in the country is now fast and furious. A young, exploding epidemic.

In our crude estimates, a whooping 35,000+ new infections will be recorded by end of 2016, the end of the 6-year Aquino administration, eclipsing by eight-fold the total infections recorded in the first 25 years of HIV in the country (4,500 total cases from 1984 to 2009).

With business as usual - low investments in AIDS, less aggressive political pronouncements about HIV response, weakening AIDS activism – projections on the number of new cases will further balloon to 130,000+ by end of the next administration in 2022. Convert that to Philhealth coverage of P30,000 per year on ARV and laboratory needs, this country will be spending P4 billion a year for treatment alone. Hey, there will be opportunistic infections, right? Primarily tuberculosis and pneumonia, and these will be covered separately from a different Philhealth package, probably by the hundreds of millions.

O yes, the country saw this in a crystal ball. Those in the know warned those we thought could be warned.

Equipped with new data, scientific tools, and clear messages which all point out to an expanding epidemic by 2015, a series of multi-level consultations, program evaluation for effectiveness, endless strategizing and planning were done.

In fairness, the country produced a clear national strategy to address the disease and was armed with a system and tools to ensure progress towards achieving the national targets are monitored and evaluated.

We had the 2005-2010 Philippine AIDS Medium Term Plan (4th AMTP printed in 2007) and the 2011-2016 Philippine AIDS Medium Term Plan (5th AMTP) with clear, ambitious targets needing at least P2 billion a year mostly for HIV prevention.

Where did we fail?
No we did not fail. The country waited.

Many of our stakeholders were convinced that HIV will soon balloon to what it is now. But majority of them was waiting for it to happen. They were willing to act, very worried, but they needed more evidence to personally see an epidemic growing.

Why?

Many felt that the P2 billion annual need was way too much for the country to legislate for HIV. Why spend for condoms and lubtricant on an “imaginary” epidemic of the future, when the need was now to cure dengue, to give DOTS treatment to TB patients, to provide hospital care to pregnancy-related complications, to a wealth of social and political problems that beset the country.

Total national investments on AIDS did not increase. The Department of Health budget for HIV remained to be less than P50 million until 2012 and did not go beyond P300 million per year since then.

With low program funds, low program reach will naturally be expected.

The national program records and sample surveys revealed that HIV testing among target population, a proxy indicator of HIV program coverage, remained to be below 20% (except for female clients of Social Hygiene Clinics whose coverage reached more than 60% in key cities). 
With few being  reached by the programs including information and education on HIV transmission and prevention, many of the target population remained to have low awareness about HIV, did not feel they are at risk of HIV despite their risky behavior, held negative attitude towards HIV protection (condom use), and other factors that contributed to the continued spread of HIV among these populations.

We cannot blame them. They cannot feel the epidemic.

The legendary AIDS Law
Digging up my office desk and reflecting on our history of HIV work, the legendary international best practice passage of National AIDS Law (Republic Act 8504) in 1998 did not happen without a story behind it. The passage was based on reasons.

Being engaged in estimations and projections, I had access to the reports and methods used around that time.

On the first few years of his presidency, President Fidel Ramos was warned that by year 2000, around 100,000 Filipinos will have HIV if his administration will not do something. This was a red flag at the time when less than 100 cases were being reported per year (only 6 cases a month).

The stars aligned on those moments, the AIDS activism was alive, government and civil society partners were on top of things, the media covered spectacular stories of Dolzura Cortes and Sarah Jane Salazar, AIDS as a health issue was on all-time high in the awareness of the public.

The result, the world praised the Philippines for passing a landmark national policy in 1998.

No cases. Where did it go?
Many were happy that by the year 2000, the dreaded 100,000 HIV cases did not happen. Perhaps the Y2K scare also eclipsed every other issue that emerged around that time.

A year later after the AIDS law was passed.

Another 5 years passed.

Presidents Estrada and Arroyo administrations later… still, the number of HIV cases were low.

Was the AIDS law so magnificent that we were successful in preventing new HIV infections? Or was it that majority of male Filipinos were circumcised? Or the archipelago of more than 7,000 islands is a natural deterrent for HIV to cross one island to another? Or did we simply miss the cases, because we did not know where to find them?

On my first year in HIV work, in 2006, I was happy monitoring the 100% Condom Use Program (100% CUP) in around 10 sites around the country. The CUP was an international best practice initiated by Thailand which brought down HIV and STI infections within months of implementation among entertainment establishments in Chiang Mai and Bangkok.

With the acceptability and simplicity of CUP in these cities, the Philippine government wanted to replicate it in many parts of the country. However, many of our cities then had a hard time understanding why they have to have the CUP.

I recall one visit in one of the cities in the Visayas. The city councilor who was the chair of the city’s legislative committee on health asked us particularly the DOH “Since you have the AIDS registry, why don’t you just tell us the names and addresses of the HIV victims in our city? We need to find them so that we will know how to avoid them. We can warn others. We can stop these infections”. It was a situation reflective of the situation in other cities in the country at that time.

For me, it was not merely ignorance, but a real, genuine reaction to our proposed solutions on an imagined epidemic. They cannot feel the presence of HIV. They cannot see the epidemic. They wanted real cases seen in their cities. They wanted a face of the epidemic, the Dolzura or Sarah Jane of their communities.

Yes, at that time in 2006, as I have narrated above, a mere 300 HIV cases were reported in the registry, and majority were seen from the clinics of Metro Manila.

The chance of a remote city having a real face with HIV was… also remote.

Confused
The experts were becoming confused.

Data from HIV surveillance since the 1990s told us that sexual activity remained to be high among young people. Age of sexual initiation was becoming younger. Multiple sexual partners remained to be high, while unprotected sex particularly non-condom use during risky sexual encounters (anal sex) stayed to very low among Filipinos identified to be most vulnerable or at risk to HIV infections – the entertainment workers (and technically called sex workers) and their clients, gay men and other men who have sex with men, and Filipinos who inject drugs.

Why was HIV not spreading as predicted in the mid-1990s?

Wildfire
Come 2009, the AIDS registry for the first time reported almost 1,000 new infections in a year, with majority of the transmission via unprotected male-to-male sex. A stark contrast to the 20 years previous to this, with which almost all of the infections were heterosexual transmission.

Within the government and among experts, one main answer was given. We were seeing more cases because we expanded the testing sites and we were testing more Filipinos.

We had at that point, 3 valuable grants from the Global Fund to fight AIDS, TB and Malaria. On the government table was Round 3 grant at P585 million ($13 million),  Round 5 at P225 million ($5 million), and the largest Round 6 at P810 million ($18 million) from 2004 to 2012 amounting to almost P225 million ($5m -$8 m) a year comprising up to 80% of total AIDS investments in the country. These grants provided valuable prevention commodities and capacities in more than 30 cities around the country – providing valuable learnings in the areas of peer education, social hygiene clinic management, AIDS awareness campaigns especially during International AIDS Candlelight and World AIDS Day.

But epidemiologists and demographers wanted more answers. Yes, we have expanded testing, but is the epidemic really here?

Aside from the passive reports of confirmed HIV positives to the AIDS registry from the HIV testing centers and hospitals around the country, we  also looked at different other data sources.

Indeed, the surveys among sample key population in around 10 cities in the country were telling us the same thing, the HIV epidemic is growing. New cases were increasing and majority were among males who have sex with other males.

In the Metro Manila cities where the survey were routinely done every 2 years under the DOH’s Integrated Behavioral and Serologic Surveillance (IHBSS), for the first time has reached beyond 1% prevalence among gay men and other men who have sex with men. One city had 1% HIV prevalence among MSM that jumped to 4% in 2011 to 7% by 2013. This was the case in the other cities. In Cebu, HIV prevalence among people who inject drugs went above 50% by 2010. By 2015, new cities not in the higher prevalence radar prior to 2011, were reported to have at least 5% HIV prevalence among MSM.

Fortunately, enrolment to ARV went to all time high by end of 2015 with more than 12,000 Filipinos taking the daily pill, all provided for free.

Deaths, while underreported as in the case of many death registries of the world, were reported at all-time high in 2015. WE had 461 total deaths by end of last year. A sad realization that 1 Filipino dies everyday due to AIDS.

HIV has finally arrived our shores.

The virus successfully penetrated the circuits of our vulnerable population.  It has, unfortunately, entered the sexual network of our mostly hidden group of population.

We will bounce back
The MDG period ended and the report card of the Philippines was marked with bloody red. We were not able to reverse the epidemic. Actually, we cannot even halt its spread. It has to stabilize first from the spurt of new infections, in the next 5 years, before we can talk of halting it.

But this could be a blessing in disguise.

With good data, better information, evidence-based communication, many more Filipinos are working with us, voicing out their support, standing up to tell everyone that we can do something.

Miss Pia Wurtzbach stunned the world, most specially the judges, when she spoke eloquently about her plans to raise awareness about HIV in our country. Indeed an enigmatic beauty with a heart, she was crowned to be 2015’s most beautiful woman of the world, the 2015 Miss Universe.

For the first time, Malacanang, through its Official Gazette, released infomercials about HIV prevention in January 2016.

The chair of the Philippine National AIDS Council herself shared in November 2015 vital statistics of the epidemic, warning that if we do the same things, we will have more than 130,000 cases by 2022. She verbally expressed her intention to invest more in the HIV program. The same can be said about the highest leaders of the Health Department, HIV is in their advocacy.

By mid -2015, the House of Representatives passed on third reading its consolidated version of the AIDS Law Amendment.

Just this February 2016, a senate version of the AIDS Law amendment has been filed after the senate working committees conducted multiple stakeholder consultations requesting experts, including the UN, and communities for clear evidences of effective HIV prevention and control.

Albeit not perfect, these 2 landmark legislations are laudable.

Our cities, particularly Quezon City, are leading examples that our cities play a key role in bringing down HIV. They are fast tracking the response to overtake the epidemic by investing more local funds, innovating local interventions by bringing services outside of the usual facilities or at least opening them until midnight so that communities in need will access them, and most of all infecting others, not with HIV but with enthusiasm that Yes, cities can!

Papang, thank you, I know my HIV status
With 4 kids, all male, and 2 older boys now on their teens, my wife and I have our share of being scared. While HIV was still a statistic, for these kids, it will be their friends, their relatives, or even their partners, jowa or whatever they will call them in the near future.

Come October 2016, I will be spending a decade of my life in this work. It will be my 10th year working with UNAIDS, with dear friends in the AIDS advocacy, and  family members.

I would like to celebrate this decade not with the gloomy projections of seeing HIV cases in every city of the country, but by savouring every experience I have had, I am having, and will have.

Let me celebrate this length of time in HIV work by sharing that both my wife and I stand as “godparents” of a friend who was recently diagnosed with HIV and has initiated intake of life-saving ARV. Yes, we gave our wholehearted yes to a friend’s request to be his treatment partner having been his “sole” family left (his parents and brothers all passed away already). A yes, despite witnessing the horrors of the ARV’s side effects. Still a resounding yes as we share the pains of acceptance and possible stigma among friends, in his workplace, in his circle.

We see, we feel hope despite his HIV diagnosis. He is and will be working and living productively, like many other Filipinos. We realized that, indeed, it was one of his best decisions, to take the HIV test, know his HIV status, and own every past decisions he had and stay alive and healthy for the future.

That is my hope. That is my wife’s hope.

That all our kids, whom we dearly call the Tamborlings, will one day recognize our efforts, the country’s collective efforts, for providing them opportunities and empowering themselves against HIV… understand HIV, know one’s HIV status, so that they can do something for themselves.

We know that one day, they can tell us “Papang, Mamang, thank you. I know my HIV status”.

Zimmbodilion “Peter” Mosende

“I joined UNAIDS Philippines in October 2006 as Officer/Adviser for Monitoring, Evaluation, and Strategic Information”

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