Racial Abuse Hurts Cancer Philanthropy

Mohamed (right) has made it his life’s mission to fulfill his late son Humaid’s (left) wish.

Dr. Prasanna Cooray

MSH Mohamed is an iconic figure in cancer philanthropy in Sri Lanka. He, together with his Fight Cancer Team, toiled with great determination and dedication to fulfill the sole ambition of his late son, Humaid, who succumbed to cancer three years ago. His last wish was to equip the Apeksha Cancer Hospital Maharagama with a PET (Positron Emission Tomography) scanner.

Mohamed’s story

As any other cancer story, Mohamed’s one too is filled with grief and despair. But his sheer dedication turned it into one of hope.

In 2014, Humaid, was diagnosed with osteosarcoma, a type of bone cancer. He was taken abroad for treatment, where millions of rupees were spent, but to no avail. On return to Sri Lanka, he was treated at a private hospital in Colombo for about six months, where again another couple of millions were spent. Three surgeries were performed on him, but with no improvement.

“We were feeling the strain, both economically and mentally. In 2015 we went to Apeksha hospital as we couldn’t afford the cost of treatment anymore,” Mohamed described how medical costs drain a family’s health and wealth today in Sri Lanka.

Commenting on the services available at the Apeksha hospital at that time Mohamed said, “As this is the only government run cancer hospital, and as the patients come from all around the country, we thought this would be of some standing. But we were disillusioned. When you compare the level of care and technology used to treat cancer elsewhere in the world with here, you feel sad and disgusted”.

“PET scanner for cancer patients is like a thermometer for fever patients,” says Mohamed. “There was no PET scanner in the hospital then. Thus, the patients were compelled to take PET scans from the private sector. They cost Rs. 150,000 each and is now around Rs. 170,000. Even my son felt the gravity of basic deficiencies in the hospital. He told me that the patients in his ward were dying owing to their inability to afford a PET scan done in the private sector. He suggested that I start a campaign to find money to get a PET scanner for the hospital, as that could save many lives. This was the only request he had made from me in his whole life”.

Fight Cancer Team

At that time the cost of a PET scanner was around USD 1.5 million. This was a daunting task for Mohamed to undertake all by himself. Yet, he could not ignore his son’s last wish. That compelled him to form a dedicated team to embark on this magnanimous task. That’s how the Fight Cancer Team came into being.

“On 6th March 2016, we launched our organization at the BMICH with full patronage of the government. All the funds we raised were to be deposited into the National Health Development Fund (NHDF) belonging to the Ministry of Health. Funds began to pour in. What we planned to be accomplished in two years was all over in three months. In three months we raised 252 million rupees,” Mohamed said in a jubilant tone.

Fight Cancer Team was only a go-between in this whole process. Mohamed commented on its operations. “We never handled any funds. 73,512 people donated to the PET scanner project. There were single contributions ranging from Rs. 50 to Rs. 36 million”.

Mohomed watching the workings of the PET scanner.
Mohomed watching the workings of the PET scanner.

Today, the Fight Cancer Team has a 1,500 strong membership, with branches in six countries. It is also the strongest civil society group dedicated to a health issue in the country.

Humaid died in September 2017. Thus, he could not fulfill his wish to donate the PET scanner himself to the hospital. “But he gave a strong message to the world. That is, there’s nothing that you can’t do if we come together,” said Mohamed.

April  1st, 2018 was a special day for the Fight Cancer Team. They walked nine kilometers from near the Wellawatte Bridge all the way to the Apeksha hospital, where the PET scanner was officially handed over to the hospital.

“We renamed “April Fools” day as the “Day of Humanity”, and that tradition will continue in cancer philanthropy in Sri Lanka”, quipped Mohammed.

Unheard Scream of Cancer in Sri Lanka

The incidence of cancer has increased of late. According to estimates there are over 100,000 patients with some form of cancer living in the country today. Around 75 new patients are diagnosed on a daily basis, and over 3,000 patients a month are treated at the Apeksha hospital.  From among the registered cancer patients around 28,000 die annually. However, this is an underestimate as not all cancer patients are registered with centres providing allopathic care. Some patients seek treatment from other alternative systems of medicine. All these patients put together, the overall mortality from cancer is estimated to be around 40,000 per year. This is the unheard scream of the cancer patients in Sri Lanka that more often than not goes unnoticed.

Plentiful shortcomings at the Cancer Hospital

Mohamed, elaborating on the shortcomings of the hospital, said: “There was no MRI scanner in the hospital in 2016, when we launched the Fight Cancer Team. Sadly, still the situation is pretty much the same. The CT scanner was over 20 years old, and breaks down every now and then. There is a waiting list of two to three months for a CT scan in the hospital”.

Mohamed was critical of the utilization of the PET scanner his team donated to the hospital. “This machine is used only one day a week. Therefore, there is a backlog of three months to get a PET scan done at the hospital. Thus, it has compelled some of the patients to seek the facility from the private sector owing to the urgency of their conditions. This isn’t what we expected when we donated the PET scanner to the hospital. Nine personnel including doctors and technicians were sent to the US spending public funds to train them on the use of the PET scanner”.

Mohamed made a special plea to the President and the Minister of Health to take a note of this unsavoury situation and to remedy it as soon as possible.

Good work to continue

On continuing philanthropic activities of Fight Cancer Team Mohamed said, “Once we completed our initial task of donating the PET scanner, we were debating whether to continue or not. Then, we were asked by the College of Oncologists of Sri Lanka to help get a Tomotherapy machine and a Linear Accelerator for the hospital”.

At present no Tomotherapy machine is available in any government hospital in Sri Lanka. The only available machine is in a private hospital, where it charges between Rs. 1 to 1.5 million per a single use.

The Linear Accelerator at the Cancer hospital is over 40 years old. “The people have to wait for over four months to get treatment from this aged old Linear Accelerator,” said Mohamed.

As for the long term ambition of the Fight Cancer Team, he said, “We are committed to make the Cancer Hospital Maharagama one of the best hospitals in Asia by 2025”.

With a young cancer patient and his family who hail from the Estate sector.
With a young cancer patient and his family who hail from the Estate sector.

Racial barrage of the Hospital Director

In a sudden turn of events, the Cancer Hospital director, Dr. Wasantha Dissanayake, on 12 December, held a press conference at the hospital and accused Mohamed and the Fight Cancer Team of illegal collection of funds and misappropriation. Embracing a “conspiracy theory” he even hinted a “terrorist hand” in the donations by accusing the “fund” of receiving donations to the tune of Rs. 20 million, the day after the Easter bombings (21 April 2019). He claimed that this money had been credited into “Mohamed’s account”.

Not satisfied with the press briefing, the Director went the whole hog by making some horrendous racial comments targeting Mohamed in his Facebook account. A definite political tenor too was evident in his remarks.

The Fight Cancer Team was swift to respond to the hospital Director’s onslaught. The Fight Cancer Team clarified, “In fact a total of Rs. 20,935,634.75 had been credited to the NHDF account on 22 April, the day after the Easter bombings, and those were the deposits received over four days, from Friday to Monday. Those were the monies donated by 8,648 people”.

Comparing with the authenticated documents obtained from the cancer hospital they showed how some of the documents had been doctored to discredit Mohamed.

Flabbergasted by the director’s unfounded allegations Mohamed said, “We signed an MOU with the Ministry of Health on 01 April 2019 (at a five star hotel) in Colombo, which was attended by the then Minister of Health, top officials of the ministry and even the present director. We were assigned the same account number that we used previously for the PET scanner project. This account comes under the NHDF of the Ministry of Health. That was the ministry’s decision, which they did last time as well. They did so to make it more secure so that nobody else, not even the Director Apeksha hospital could withdraw money from it without their approval”.

Commenting on the success of the second phase of the fund raising Mohamed said, “We have already collected Rs. 140 million through almost 200,000 donations during this period since 1st April”.

Director’s response

When Dr. Dissanayake was contacted by the Counterpoint, he claimed Mohamed and the Fight Cancer Team were involved in collecting money fraudulently from the public by ‘selling cancer’. He said he had informed the higher authorities and the police of the unscrupulous activity.

When asked about the shortcomings and the long delays in getting PET scans done at the hospital he said, “That’s not my responsibility, that’s the responsibility of the chief radiologist”.  But his mandate involves ensuring that the hospital functioned smoothly.

Racial abuse hurts Cancer Philanthropy

Mohamed dismissed any Muslim identity in his fight cancer initiative. “This has traversed the ethnic or religious bounds. This is a true Sri Lankan entity. People of all ethnicities, religions and walks of life are in this, and people of all ethnicities, religions and walks of life contribute to this.  We never mix-up ethnic or religious identities with our work. That’s why all the Sri Lankans embrace us”.

(Public Health Writers’ Collective)

See also Counterpoint previous article on the PET scanner @ http://counterpoint.lk/those-underused-pet-scanners/

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