Finding ‘Care for Rare’ Orphan Diseases

Sunday Inquirer Magazine/FEATURE/by Ma. Ceres P. Doyo

HAVE you heard of Pompe’s disease? What about MPS Hunter syndrome, maple syrup urine disorder (MSUD), Gaucher disease and adrenoleukodystrophy (ALD)?

Even if you shed tears while watching the movie “Lorenzo’s Oil,” you probably would not be able to recall or pronounce the name of the disease – it was ALD or adrenoleukodystrophy –around which the plot revolved.

The recent movie “Extraordinary Measures” (starring Harrison Ford as the eccentric doctor-scientist and Brendan Fraser as the father of two ailing children) may not have been as riveting as “Lorenzo’s Oil,” but it also turned out great performances and gave hope that a cure – this time for Pompe’s disease – could be found. In fact, they came close with enzyme replacement therapy.

Both based on true-to-life stories, the movies showed that with the combined efforts, persistence and the support of parents, doctors, scientists, research financiers and society at large, there is hope for those with rare or so-called “orphan” diseases.

Here, the Philippine Society for Orphan Disorders Inc. (PSOD) is at the forefront of the “care for rare” advocacy and coordinates efforts to sustain the quality of life of individuals with rare disorders.

There have been many breakthroughs since its founding in 2006. PSOD has become a support group for patients with rare disorders and their families. It has established a network of patients, families, doctors and support groups in different parts of the world. It was able to push for a bill on rare diseases in both the Senate and the House of Representatives. And more importantly, many patients have found access to treatment and are now enjoying a better quality of life.

This is not to say PSOD has it all. There is much that needs to be done.

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Pass bicameral version of FOI bill ASAP!

Philippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

TODAY THIS SPACE gives way to the urgent statement of the Right to Know Right Now! Coalition on the Freedom of Information Act that we, those in the media especially, want raised from the dead. (Because of space limitation some lines had to be omitted in the print and online versions. This blog version is complete.) Dear readers, please be with us in this crusade.

It was the best of times, it was the worst of times,

it was the age of wisdom, it was the age of foolishness,

it was the epoch of belief, it was the epoch of incredulity,

it was the season of Light, it was the season of Darkness,

it was the spring of hope, it was the winter of despair…”

This brilliant prose of Charles Dickens, in the beginning of his epic "A Tale of Two Cities", could have been written also about the recent death, nay murder, of the proposed Freedom of Information Act in the 14th Congress. What could have been a legislation of wisdom, light and hope for good governance and people empowerment was overcome by the foolishness, dark motives and desperate designs of those who seek to thwart good governance and to keep people at the margins of power.

Indeed, the Freedom of Information Bill was nearly almost enacted, after over 14 years of unflinching advocacy work by all social sectors for its passage. The bill failed to advance significantly in the 11th, 12th and 13th Congress but finally moved in the 14th. The penultimate step, before transmission to the President for signing, would have been the ratification by the House of Representatives and by the Senate of the bicameral conference committee report.

The Senate promptly fulfilled its legislative duty on February 1; the House did not. With session days fast running out, the leadership of the House professed support for the measure when in truth it did all it could to prevent the ratification of the bill. On four session days – February 2 and 3, and May 24 and 31 – the House leadership either refused to put the bill on agenda, or worse, stomped all motions by the bill’s authors to ratify the bicameral conference committee report.

But the lowest point was reserved for June 4, the last day of the third and last regular session of the 14th Congress. On roll call after a quorum question, the House Secretary General reported that 128 members were present, short of the 135 members needed for a quorum. A motion was made for the present members to compel the attendance of absent members, as provided by Section 74 of the House Rules. This measure is supported by no less than the Constitution (Article VI, Section 16, par. 2), precisely to prevent absent members from holding hostage the conduct of legislative work. Speaker Prospero Nograles ignored the rule and even scoffed at the motion.

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Corruption in the peace department (3)

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Corruption in the peace department (2)

Philippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

“Blessed are the peacemakers, for they shall be called the children of God.” —One of the eight Beatitudes in Jesus’ Sermon on the Mount.

From Tibet, the United Arab Emirates and here at home came e-mailed reactions from Filipinos who were outraged and shocked at the disclosures of Secretary Annabelle Abaya, outgoing head of the Office of the Presidential Assistant on the Peace Process (OPAPP). Abaya who has headed the agency for barely a year discovered a nest of corruption inside the august department mandated to help bring about peace in strife-torn areas in the country.

As I said last week, that situation was not entirely unknown. There had been stories from insiders who knew about what was going on. Someone I knew who had worked with the OPAPP and left in disgust years ago once told a group of us that someone in the office had asked her if she wanted to participate in a ghost project. She replied in jest that she didn’t need the money as she had enough. She also described the power to corrupt of the Commission on Audit personnel assigned to the OPAPP at that time. Speaking of bantay-salakay.

Some readers said they were bitin (in suspense) with last week’s column piece (we dwelt on Abaya’s discoveries on her first and second days in OPAPP) and asked to have more of our interview with her. So here is more.

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Corruption in the peace department

Philippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

“Ah, it was an exciting novel. It was action-packed from Day 1.”

Thus started Secretary Annabelle Abaya, head of the Office of the Presidential Assistant on the Peace Process (OPAPP), when she recounted to the Inquirer the unraveling of the web of corruption in the peace office. Abaya headed the agency for less than a year, succeeding Avelino Razon who ran for Manila mayor and lost in the last elections. Soon she will leave her post when the newly elected president, Noynoy Aquino, assumes office and appoints a new head.

Abaya’s non-fiction “novel” deserves serialization. For now, here’s a teaser from the interview she gave the Inquirer. Hold your breath.

“Yes, no one warned me. At 9 a.m., on my first day on the job, I was briefed that I would get several millions on the first five days of each month, and was presented with a list of whom to pay. I pretended to act normal. I didn’t know if this was legitimate. I thought I was only being tested. But by mid-day, someone else came along with another list of persons we supposedly need to pay monthly.

“When I asked if the people on the list were the same people on the other list given to me in the morning, I was told, ‘Wala ho akong pakialam sa listahan ninyo. Ito lang yung sa akin.’ (I have nothing to do with your list. This one is mine.)

“Still I acted normally, not wanting to show alarm bells ringing in my head. I wanted them to think I was cool about it so they will tell me more. But by the end of the day, the same person came to me and said that a new release was made to my office for a specific project. I was given a list of people to be paid off for the release: “P10 million to this, P3 million to that, P1 million to this and that. I couldn’t hide my shock this time, so I asked what this was for. I was told, ‘Ganyan ho talaga ang kalakaran dito’ (That’s how business is conducted here.) I had to catch my breath and take hold of my panic. That night I couldn’t sleep till 3 a.m.”

That is just the prologue. Take a deep breath. There is more to the P170-million fund scam that Abaya brought to the open. The amount may be peanuts to big-time plunderers and highwaymen but this is not the Department of Public Works and Highways, this is the peace office, supposedly hallowed ground for peacemakers whom Jesus Christ extolled in the Beatitudes.

People are used to knowing about corruption in high places especially in government agencies involved in high finance projects, contracts, bidding, procurement, revenue collection and the like. But learning about corruption in an agency tasked to delve into the roots of unrest and discontent that lead to armed resistance of the citizenry, in an office mandated to find permanent solutions to decades of strife is so, so shocking.

What a letdown. Not that no one had suspected this all these years. I had heard horror stories from someone who used to work in the OPAPP and left in disgust, something about the resident auditor wielding power in liquidations and sowing fear in the hearts of those who did things straight. “Iipitin ka (You’d be in a tight spot) if you didn’t play along and your legitimate expenses and liquidations would be questioned,” an insider said then.

Now it is the head of OPAPP herself that has revealed what she discovered during her short stint. Abaya recently announced in a peace forum in Mindanao that she was “proud of breaking the back of corruption” in the government body directly tasked to facilitate peace negotiations with the secessionist Moro Islamic Liberation Front and the communist New People’s Army. The OPAPP is, of course, expected to go beyond table talks and negotiations, and find ways to bring lasting peace to in strife-torn communities.

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A verdict 25 years after Bhopal tragedy

Philippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

IN THIS DECADE of disasters, both natural and man-made, it behooves us to remember the 1984 Bhopal tragedy in India which killed more than 20,000 people and whose aftereffects continue to destroy the health of thousands. In terms of human lives lost, it is considered the world’s deadliest industrial catastrophe, and it could have been prevented. It was one of the worst ecological disasters in history, rivaling Chernobyl in Russia.

Now, 25 years after that lethal gas leak, an Indian court has sentenced seven former top managers of the US-owned Union Carbide pesticide factory to two years in prison. According to an Agence France Presse report, the company executives were originally charged with culpable homicide but, to the outrage of survivors and victims, the Supreme Court in 1996 reduced the charges to death by negligence with maximum imprisonment of just two years.

There is little to rejoice over in this verdict.

The Bhopal local government had also charged Union Carbide’s CEO Warren Anderson with manslaughter and, if convicted, he could serve 10 years in prison. Warren evaded international arrest and a summons to appear before a US court. Extradition moves were unsuccessful. In Aug. 2002, Greenpeace found Warren living a life of luxury in the Hamptons. He was not included in the recent verdict because he was considered an absconder.

Many of the youth of today and the future might not know about Bhopal because the tragedy is not likely going to make it to the textbooks. Does it not qualify as a historical entry like the 79 A.D. Mt. Vesuvius eruption that buried Pompeii? Will our own 1991 Ormoc mudslide that killed thousands in a blink of an eye make it to our error-ridden textbooks (which are a huge disaster in themselves)? And didn’t we see a likeness of Ormoc in last year’s “Ondoy” and “Pepeng” disasters? And not to forget the Marcopper mine disaster that poisoned the province of Marinduque.

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D-Day for FOIA

Philippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

Friday is D-Day for the Freedom of Information Act (FOIA). Will it be passed in the House of Representatives on the last session day? Just one more nudge, isang pindot na lang, and if it gets passed (as it had been in the Senate) we will become more enabled and empowered citizens of this nation. What a great day it would be.

What previously have been kept in the dark can now be brought easily into the light. Many things that have been hidden can be easily laid bare. Without fear and trepidation, the Juans and Juanas of this country, journalists among them, can demand easy access to information. It will also be time for those perennially hiding their shady deeds to give up old practices and start living honorable lives. (As if giving up an addiction would be that easy.)

We can also stand tall and proudly tell some of our Asian neighbors that like them, we have this empowering law.

What is FOIA if not simply the hows of our right to information as enshrined in the Constitution? This right is already etched in stone, we just need the mechanics on how to exercise that right and yet…

 As they say, while it has been easy for us to speak and speak out loud, it has not been easy for us to know. Indeed it has not been easy for the FOIA to get to where it is. One day before D-Day and the FOIA is still precariously perched on the edge of a cliff.

All the multi-media and civil society efforts by way of editorials, live discussions, talk shows and forums have resulted in people’s heightened awareness of its importance. But Congress has chosen to procrastinate till the last day or the end of time, so to speak. If the FOIA falls down the cliff on Friday, it will have to again start from the bottom in the next Congress. All the efforts to get it to where it is now will be for naught. It will be back to the salt mines for us.

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Misa Baclayana: ancient beauty that sounds so new

Philippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

WHILE THE ELECTION frenzy was at its peak, the National Heritage Month was being celebrated. The charged atmosphere of the campaign and the election itself had all but eclipsed the various heritage-related activities in the month of May but it was good to take time out for some cultural treasures that were offered for us to relish and marvel at.

One of the events I attended was the performance of the Misa Baclayana at the Manila Cathedral in Intramuros with the famous award-winning Loboc Children’s Choir of Bohol singing. It was one of the heritage offerings of the Intramuros Administration headed by Bambi L. Harper.

I was impressed. In terms of grandness Misa Baclayana may not be in the league of the famous "Masses" by Mozart, Bach or Brahms but it has its own melodious allure. Although the sung parts from the Misa Baclayana were in Latin, the Mass, officiated by Archbishop Jesus A. Dosado, was in English. At the pipe organ was Alejandro Consolacion.

The music blended well with the post-Vatican modern liturgy as we know it. I don’t know if it will stand out just as well within the Tridentine Latin Mass that traditionalists are trying to revive. I liked the sound of the old hymns blending with contemporary liturgical worship. To paraphrase and juggle some words from St. Augustine, it was ancient beauty that sounded so new.

Discovered only a few years ago in Baclayon Church in Bohol, Misa Baclayana is an old musical score believed to have been written in the 1800s.

But a lot of credit must go to Maria Alexandra Inigo-Chua, musicologist, professor, researcher and author of “Kirial de Baclayon Ano 1826: Hispanic Sacred Music in 19th Century Bohol, Philippines” (Ateneo de Manila University Press, 2010). Her study focuses, in particular, on the “Kirial de esta Yglesia de Baclayon” dated 1826 which contains Mass cycle compositions used in the liturgy of the Catholic Church.

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Noynoy presidency: With ‘grace of office’ comes every blessing needed

Philippine Daily Inquirer/FEATURE/by Ma. Ceres P. Doyo

IN SPIRITUAL LANGUAGE it is called “the grace of office.”

Could presumptive president-elect Sen. Benigno Aquino III and the nation that has apparently elected him by a landslide count on that?

It is said that when God invites or calls an individual to undertake a task, He also provides him the grace to carry out that task or calling.

“The grace of office” has often been used in the context of a religious vocation, especially for those in leadership positions, their imperfections, weaknesses and reluctance notwithstanding.

Biblical times and even contemporary history have seen ordinary persons rise to the task, strengthened only by their belief in God’s calling and their faith in the accompanying grace that would help them carry out their destiny.

There were those who rose and fell, as there were those who fulfilled their mission with humility and obedience.

In the case of Noynoy, will this special “grace of office” carry him through, and how?

The Inquirer interviewed theologians and others active in Church ministries for their thoughts on Aquino’s all-important mission.

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:-D LOL: Noynoy-Nognog and other election funnies

Phlippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

FILIPINOS ARE KNOWN TO ALWAYS FIND AND create humor even during the bleakest of times, poke fun at the serious, ridicule the sublime and the ridiculous, make jokes and puns out of serious situations and at the expense of persons. Once again the recent elections and the moist-eyed candidates (and their campaign ads) became fair game for the jokesters, punsters and hecklers, and so far, no one with a victim complex has filed a libel complaint or damages for psychological cruelty or intense embarrassment that caused sleepless nights and agoraphobia.As they say, ang pikon, talo (the easily piqued is a loser).

Blogs, social networking groups (Facebook, etc.) and e-groups had a heyday circulating the jokes, some of them merciless. Jokes can work for or against their target victims. Former President Joseph “Erap” Estrada decided to use many of these on his own person as a reverse tack when he ran for president in 1998 and got away with a best-selling “Eraptions.” When he later got convicted for plunder, the joke was on him, literally.

I’ve had a great time reading and listening to the 2010 election jokes and laughing out loud (that’s what LOL stands for) even by myself. Even the hard-nosed Philippine Center for Investigative Journalism (PCIJ) came out with a serious well-researched piece on this Filipino preoccupation. It’s titled “Joke the vote, pun the bets” by PCIJ interns Camille de Asis, Ivan Lim, Mark Tare and Angela Poe. The writers provided in-depth analysis and context.

The piece begins: “Barring last-minute surprises in the election count, the Noynoy-Nognog tandem will lead the next casting at Malacañang Palace in the next six years, according to funny-boned Filipinos.

“Nognog, dark-skinned Makati Mayor Jejomar Binay in real life, will also be installed as the country’s “first black vice president,” they say.

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Noynoy’s green agenda

Philippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

FIRST, let me say that one of the two presidential candidates that I rooted for will soon be President of the Republic of the Philippines. As they say, it’s all over but the proclamation.

Last month, Greenpeace and EcoWaste Coalition released the six presidential candidates’ answers to the 2010 Green Electoral Initiative (GEI) questionnaire and gave overall rankings based on the candidates’ stand on environmental issues such as climate change, solid waste, chemical pollution and consumer safety, sustainable agriculture and genetically engineered crops, water, forests, nuclear power, mining, etc.. No other advocacy group had asked the candidates to put their agenda on an issue in writing and affix their signatures. The responses were evaluated by a team.

It is worthwhile to evaluate the responses of Sen. Benigno “Noynoy” C. Aquino III who will soon begin his journey with this nation. Aquino ranked fifth in the green survey, trailing behind Perlas, Madrigal, Gordon and Villanueva. But the ranking did not mean an endorsement or rejection of anyone.

Aquino answered all except Part X (“Your environmental track record”). Here are some questions and answers:

Q. Your first environmental act during your first 100 days in office.

A. Certify as urgent for the legislature to enact a law, a mandated by the Constitution, to delineate once and for all forest lines in the country, as a clear basis for the crafting of a comprehensive national land use policy, as well as for the definition of watersheds and fragile ecosystems.

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Avalanche of non-biodegradable campaign trash

Philippine Daily Inquirer/OPINION/by Ma. Ceres P. Doyo

MOST OF US SHOULD NOW BE feeling suffocated, assaulted and violated by all the election campaign ads imposed on us. They appear non-stop on TV, radio, the Internet, cell phones, e-mail. They have congested the airwaves and Cyberspace. The streets are covered with campaign posters, banners and billboards. Wall space, posts, trees, railings, street dividers, electric and phone cables, the sky above and the earth below are filled with vote-for-me posters and hangings that could fall on you anytime.

On Wednesday, an electric post in Quezon City fell under the weight of campaign paraphernalia. In the area near the public school where my voting precinct is, there are now tens of thousands of hanging faces and names and the heavens around there have been obliterated from view.

Only in the Philippines. Only in the Philippines where this practice is prohibited (except in designated areas) is the law against it ignored and violated.

But there are places that are the exception. Several weeks ago, on the way back from a whale shark (butanding) interaction in Donsol, Sorsogon, the Inquirer Outdoors Club passed through Naga City. I saw how clean the environment was. There was no campaign poster in sight. If the law could be enforced there, why can’t the Comelec enforce it elsewhere? Here in Metro Manila, billboard anarchy rules.

Time was when campaign paraphernalia were made of biodegradable materials such as paper and cardboard that got washed away with the rain. Now they are made mostly of non-biodegradable materials such as plastic that can withstand the elements and remain in the environment for as long as many lifetimes. It’s an environmentalist’s nightmare.

Some weeks ago I passed by a city hall and saw a huge pile of tarps, posters, wood and bamboo frames that had been removed from areas where these were prohibited. Maybe those campaign paraphernalia were taken from just one small street and yet what a huge pile they made. After they were taken down, I’m sure replacements were put up right away. How many times have I taken down the posters nailed on the electric post in front of my gate? The next morning another candidate’s face occupies the vacant space.

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