Friday, September 29, 2017

Reflections on a father, a son, and a scanner

A tribute to those who fight so that others may live.

About a year ago a campaign to raise money to purchase a much-needed machine for a hospital was carried out. Successfully. It was an attempt to get relevant authorities to be aware that such a machine was needed for about 100,000 of those living among us suffering from cancer, and 20,000 more who get added to that number every year. I wrote on that, the person who led this campaign, and the “why” and “how” behind the person’s motivations. More than a year on, where are we?

Numbers don’t lie. So here are some statistics. In addition to the 100,000 who suffer in the country and the 20,000 who get added, at any given point there are around 300 doctors tending to cancer patients laid down on more than 1,100 beds. Two years ago, of that 20,000 more than 13,000 had been admitted to the Cancer Hospital. In Maharagama. That’s the Hospital the campaign I mentioned above was for. The fact that 65% of our cancer patients resort to it indicates, discernibly, that most of those afflicted with the disease are unable to afford private treatment elsewhere.

It all began three years ago. A man called M. S. H. Mohomed wanted his son, diagnosed with osteosarcoma, cured. He took his son, Humaid, to a hospital in Chennai. The hospital had facilities and the latest technical expertise, but cost a lot. And so the father spent. Throughout 2014, he sold three of his properties, dug into his pockets, and tried a cure. Nothing worked. He thus brought his son back to Sri Lanka. Humaid was admitted to a private hospital for six months. Again, the bills kept on mounting and nothing happened, despite two surgeries on his lungs. Desperate, his father admitted him to the Maharagama Hospital.

The Hospital wasn't privately owned. For someone like Mohomed, it was kind of last resort you'd run to when you'd run out of options elsewhere. In other words, a place associated with squalor and lack of quality. For Mohomed, though, a few days and weeks were enough to open his eyes. "The doctors were kind, the service was excellent, and the nurses were courteous," he remembered later for me.

Because of this, he wanted to give back. He wanted to appreciate and to let others know. He picked on a key item the Cancer Hospital lacked: a PET (Positron Emission Topography) Scanner, used to differentiate between malignant and normal tissue when detecting cancer (something the machines that the Hospital had couldn't do). The scanner was available at private hospitals, but for better or worse (I prefer not to take sides) they were and continue to be run at a profit. For this reason, tests were expensive. Getting a scan at one of those hospitals cost about 150,000 rupees, clearly outside the reach of a great many people.

So Mohomed got to work. He had contacts. He had money. He used both. For the next few months, he drove a campaign which was unparalleled in that it didn't receive the kind of recognition it should have from officials. People responded. Citizens, be they Sinhala, Muslim, or Tamil, got together. Where the government failed, the people delivered. They needed to raise 200 million. Hefty, but not impossible.

Along the way, they got more support. An anonymous donor gave 35 million rupees. A TV station gave airtime and was behind the campaign, proving that the media wasn't as unethical as the government claimed. Back when ministers were quibbling over vehicle permits, when the worst floods had come without as much as a proper government salvage operation, the people came out. An organisation was founded by Mohomed, the Kadijah Foundation (named after his mother), to collect funds.

On June 13 the campaign was over. They'd reached 200 million.

That campaign wasn’t just for the PET Scanner, by the way. It was also for those other machines the: a MRI Scanner, a CT Scanner, a Genetic Lab, an Endoscope, a Colonoscope, a Bronchoscope, an Ultrasound Scanner, at least two other ambulances, and, finally, hearses for the dead. The Cancer Hospital lacks most of these and what it has are either (as with the CT and Ultrasound Scanners) almost 15 years old or (as with the Endoscope) malfunctioning. As for the cost, Mohomed gave me a figure: more than 800 million rupees. Not an amount to play with, one can argue.

Mohomed was born in Kalutara. When he came to Colombo in his youth, he had nothing, except a will to survive, to thrive, and to live with his conscience. When he rose up, with a family, and when his business flourished and everything seemed alright, his son, Humaid, complained of a pain on his shoulder. That was when everything really started, including the campaign, and Mohomed, whom I called “our hero” (the nation’s hero) last year, encountered his conscience. The personal is always greater, and more potent, than the social, which is why in this crisis, and through it, he remembered his boyhood will to wade through thick and thin with that conscience.

All that congealed last year to a new trust, a new foundation: “Fight Cancer Trust”. Limited by guarantee. They held seminars, frequently visited government and medical officials, and tried to ensure that the 200 million and the 800 million were not in vain. Of the equipment that the Maharagama Hospital needs, the PET Scanner figures in significantly. Which begs the question: why has it taken so long?

Now getting down a PET Scanner is not easy. There’s work to do. Time to spend. You can’t go in your private capacity as a citizen; you must order it through the Ministry of Health. A Tender Committee needs to be appointed. Once the tender is called, you have to wait for 42 days (a statutory requirement) before you close it. Then the tender must be approved by the Tender Board, which can take anywhere between two weeks and two months. The Minister’s final approval can then take up to another two months. Even after all that, ordering the Scanner still isn’t easy. You need to open a Letter of Credit. You then need to tell the manufacturer who scraped through the tender process to assemble it as per the requirements of the hospital. That takes around two months. Shipping it takes three weeks, fixing it in the hospital takes six, while radiologists at the Cancer Hospital need to be trained to handle it. Meanwhile, you need to import fluorodeoxyglucose (FDG), a chemical used in the machine, from India.

And then there’s the hospital itself. You can’t move the machine into it as you would another machine. You need to move it into another building and what’s more, you need approval from the Atomic Energy Board, after which you can finally get the machine down. And that after more than 50 weeks, 12 months, or one year. Waiting for one year, as I’ve pointed out before, means waiting for death to take over about 13,000 other people (in keeping with those statistics). Which in turn means that the Ministry should have done the needful and, all in all, quickened the process.

Have they though? The short answer, not really. The campaign that officially ended 16 months ago has lagged. To get a PET Scanner requires getting through several barriers. That’s part and parcel of the law, and how it’s institutionalised to ensure that everything involving money, and public causes, is planned for while adhering to both its letter and spirit. One can argue that it takes time, that it’s an inconvenience, and that it’s casually done away with once a powerful politico wants to get his or her cronies through. Even with such arguments, however, the original argument for getting such processes screened through legal mechanisms is powerful, defensible.

But there were other ways. The PET Scanner could have been called for through a collective Cabinet decision, instead of letting it be shrouded with regulation after regulation that can at the end of the day prove fatal for those 13,000 people. It wasn’t. Why not? Is the Scanner so inessential (the fact that it’s considered a necessity even in private establishments indicates otherwise) in the minds of our officials?

I am writing this with some anger. And not for no reason. 16 months ago, the campaign was launched. 16 months later, that Scanner is yet to come. Not just yet to come, but yet to come with a key person behind the campaign missing. For M. S. H. Mohomed’s son, Humaid, that young man who got the father interested in this whole matter, passed away a few weeks ago. I mentioned before that the personal being stronger than the social in getting us to understand tragedy. The personal, ladies and gentlemen, is strongest in times of loss. And bereavement. That’s where we are, and the fact that no official has striven properly for the betterment of the only affordable Cancer Hospital in this country tells a lot about us. Rather badly.

Written for: Daily Mirror, September 29 2017