MALAYSIANS KINI For 20 years until recently, many women in the United States have undergone a surgical procedure known as ‘power morcellation’ to either remove fibroids from their uterus, or their entire uterus.
Some 100,000 women underwent the procedure each year, which its proponents tout to be minimally invasive and a better alternative to open surgery.
A device - known as a power morcellator - would be inserted through a small incision in the abdomen to shred uterine tissue into tiny pieces, and then remove them from the body (usually through vacuum suction).
Unbeknownst to the patients however, the device can also spread cancer all over a patient’s abdominal cavity if its spinning blades strikes cancer cells in the uterus or in the fibroids, which may have been unsuspected or missed altogether during scans.
This was until a physician couple, Amy Reed and Hooman Noorchashm, raised the alarm about three years ago after Reed had undergone the procedure. She is now battling multiple cancerous lesions all over her body.
Matthew Ong, a Malaysian journalist with an oncology newsletter based in Washington DC, picked up on the couple’s story, and subsequently highlighted weaknesses in how the US Food and Drug Administration (FDA) clears medical devices for use, and how it monitors whether patients have been harmed by medical devices.
He has received seven journalism awards for his work, including the 2014 Society for Professional Journalists' Sigma Delta Chi Award for public service in newsletter journalism, and the 2015 National Press Club Award for Best Analytical/Interpretive Reporting in Newsletter Journalism.
His work has also prompted four federal investigations into whether hospitals and device manufacturers had breached federal law by failing to report adverse outcomes involving the power morcellators to the FDA.
Power morcellation is now highly restricted by the FDA, while a bill is pending in the US Congress to tighten rules on how adverse events involving medical devices are reported to the FDA.
According to an FDA advisory, an estimated one-in-350 women who are eligible for the procedure risk having undetected malignancy spread by the power morcellator, which would severely reduce their survival prognosis.
Back in his home country for his annual break, Ong, 26, dropped by Malaysiakini’s office a fortnight ago for an interview. Here is Ong’s story in his own words.
I AM FROM MALACCA, MALAYSIA. I went to St Francis' Institution and after I graduated from high school, I went to Nilai University and transferred to the US (under the American Degree Transfer Program).
Both my parents are teachers. My mum runs a school; my dad is retired now. So I really wanted to make a difference, like every other writer who goes into journalism.
MY PRIMARY DRIVE HAS ALWAYS BEEN DISCOVERY, TRUTH AND JUSTICE. My first ambition was to be a police officer. And then I wanted to be a scientist. I am always very passionate about truth, discovery, and justice.
My parents are the kind of people who are very politically...not involved, but invested. They read the papers from, I don’t know, 7.30am (every morning)?
When they come back from work, they would read the papers cover-to-cover. If they have to stay up until 2.30am just to finish everything, they would. They would take the newspapers to bed and read it.
So since I was a kid, my parents would talk to me about politics - about what was going on in Malaysia, and of course many stories about all kinds of political injustices.
They always imparted to me that it is important for a society to have a free press and freedom of speech, in order to foster a healthy democracy, because without a free press, we don’t have a dialogue and we cannot hold officials accountable.
I WAS THE KIND OF KID WHO WOULD JUST SIT DOWN AND READ BOOKS. Anywhere. I would hide in my room after bedtime, and turn on a small light, and read books in the dark.
(In secondary school) I enjoyed science - I liked biology, physics, and chemistry, and I liked biology the most. But I decided that the experimental process was a bit too slow for me, and I didn’t like doing math, so those were two things. I enjoyed reading it, but I didn’t enjoy actually doing it.
At the same time, I’ve always excelled at writing. When I was in Form 5, I won a scholarship award for the student who has contributed most to the development of the English language in our school.
That was the only award I cared about in high school. I just wanted to get that, and I did everything I could to be a good public speaker, a good writer, to be an editor in the school magazine, and everything.
I would sit in my math classes and read novels. My teachers hated me for that.
I hated Additional Math, so I would just sit there and read Harry Potter under the desk instead of paying attention to class. So I’ve always enjoyed stories more than anything else. I thought many other things that didn’t have a narrative or context was boring to me.
I guess I was always set up to be a writer.
WHY JOURNALISM? It is actually an interesting story. I started in corporate communications and marketing communications when I was in Nilai, and my department manager at the time said, “You know, you should go into journalism because if you do like writing, that’s where you wanna be.”
So, I’m like, that actually sounds like a better idea. So when I went to the US, I majored in journalism.
I went to Marquette University. It is a Jesuit school. I majored in journalism, psychology, and women’s and gender studies.
So I have been living in the US for six and a half years now. I am a reporter for The Cancer Letter, which is an oncology news publication covering cancer research funding, policy, politics and drug development.
I had worked at other news organisations. The Milwaukee Journal Sentinel is a very high-quality newsroom and news publication that did a lot of investigative reporting.
When I went to The Cancer Letter (as an intern), Paul Goldberg, my editor, excelled at investigative reporting, which is what I wanted in a mentor. It is in science and medicine, which I am always passionate about, and I saw it as an opportunity where I can do very high level work right from the beginning, because, like I said, it is a very small news publication.
WE ACTUALLY HAVE ONLY THREE EMPLOYEES, INCLUDING MY EDITOR. If I joined a traditional news organisation, I would have needed to climb the ladder from the bottom, whereas my editor told me that I could do the work, and offered me a job within my first week.
No doubt it was a very steep learning curve for me, because I had to understand the entire healthcare system and oncology within a few months, because the pressure was high. I had to produce high quality stories because it is a small publication, but I picked up rapidly.
The language itself was not at all difficult for me, because I’ve been reading medical encyclopedias since I was five years old. So the science was not a problem.
I think what was initially difficult for me was to understand the politics, the players that are involved, and the relationships within the industry or in the field of oncology. It is those things that I needed to brush up very quickly.
Usually my editors and I get stories because people call us. They would just pick up the phone and it’ll be like, ‘Hey Paul, hey Matt, this is the story you have to cover,’ and we would be like, ‘Tell us about it. Is it interesting?’ and we would decide what’s good.
Like any other story, someone called my boss and said, 'you should pay attention to this, it is really heating up the field right now'. My editor said (to me), ‘Oh, it sounds like a routine story about a medical device. I don’t have time to do this, why don’t you take the story and run with it?’
So I literally took the story and ran with it.
I personally didn’t break the story - The Wall Street Journal did.
WHEN IT CAME TO ME, my job was to make sure the policy and the regulatory parts of the story were well-reported, because that’s what people pay us to write. So I would say The Cancer Letter broke (the story on) nearly every major policy decision on the issue.
So when I started on the series, I wondered: How is it possible that this device is being used on 100,000 women a year in the United States - and it has been around for two decades - and nobody knew how and why this device is causing harm to women?
How is it possible that gynaecologists did not know the risk of spreading cancer with this procedure was much higher than previously assumed (although) many studies throughout the years have suggested that the risk estimate is closer to one-in-300 to 1,000 instead of one-in-10,000? Is there a much safer alternative?
Why did hospitals, device manufacturers, and physicians, continue to perform power morcellation on patients, even though they knew of the risk? Why did no one report the adverse events to the government, which is required by federal law,
before December 2013?
So basically, how are so many people dying from this? Why is nothing being done about it, and how was it missed for so many years?
I JUST KEPT DOGGING THE STORY FOR TWO TO THREE YEARS. Besides going into the details and the science, I just took a step back and looked at the entire system: How did this happen?
I wrote a huge three-part story in December last year about what the government can do and should do to fix this problem. Right now, there is a bill that is going through Congress to try and reform the requirements for physicians to report harm to patients. So that’s basically the gist of it.
WHEN I WENT INTO JOURNALISM, I KNEW NOTHING ABOUT AWARDS. I didn’t care about awards when I started in journalism.
So when I wrote this story, I was purely interested in the story itself. I was invested in the public good and public service, and in fighting injustices wherever I see it.
I followed the story to the end of my first year of covering this issue, when my boss said, ‘Wait a minute, this is probably an award-winning story.’
My editor nominated me for the awards. So within my first year of my coverage, I’ve won three first place awards; two national.
IT’S GREAT TO HAVE AWARDS. They're clearly good for your career. It's very nice to have journalism organisations and other experts and peers in your field recognise your work as something that is worth reading, and as something that is having a real impact on people’s lives. That’s all very nice.
But the most important part of it is what the story is about, who is being held accountable, and how can we make our systems better to serve patients.
I am still following the story, but this year I have mostly moved on to covering the National Cancer Moonshot Initiative.
Vice-President Joe Biden and President Barack Obama started an initiative in January to try to expedite or speed up progress in cancer research over the next five years.
So naturally, as the leading cancer research policy publication, it is our job to follow this closely, and most of my stories this year have been focusing on how we can improve and speed up our systems to help speed up discoveries in cancer research.
That’s my focus this year.
My editor has plans for giving me more responsibilities and helping me grow in my current career in my job, so I think I continue to have very good opportunities with The Cancer Letter and I plan on writing for The Cancer Letter for a good while.
If a great opportunity in Malaysia arises in which I can see I can contribute in a positive way, I would love to do that.
Obviously, writing the truth in Malaysia is…one has to be cautious in writing about controversial subjects in Malaysia, and journalists should have freedom to serve the public without fear of persecution.
Malaysiakini is one of the most trusted independent news publications in Malaysia right now. I think the mainstream publications are doing a good job, but we definitely need a larger workforce of writers and reporters who are willing to make journalism a career in Malaysia.
The sense that I am getting from my fellow writers in Malaysia is that they are not being encouraged to join non-traditional career paths like being a journalist. Arguably, the political climate in Malaysia is hostile to the development of a free press.
The government has been cracking down on news sites, banning hard-hitting publications that are exposing all kinds of things that are of interest to the Malaysian public, and that is not conducive to a healthy and strong free press.
The shutdown of The Malaysian Insider, I believe, is a huge loss to the Malaysian public.
MALAYSIANS KINI is a series on Malaysians you should know. You can find Ong’s award winning series on power morcellation and US regulation of medical devices from The Cancer Letter, here.