Cancer patients already have to fight the disease. For many Sri Lankan families, they must simultaneously fight to keep the household going sometimes while wondering whether critically needed medicines will be available when treatment demands them. This Saturday, hundreds of voices will come together for children battling cancer. Having prayed for better delivery of medicines, perhaps patients are entitled to turn to music, human kindness and God’s grace for some of the hope an imperfect system has not always been able to provide.
Cancer does not stop the electricity bill. It does not tell the landlord to wait. It does not postpone the cost of food, transport or a child’s education. The mortgage still falls due, the telephone still needs paying and somebody still has to put dinner on the table.
Cancer can, however, stop your wages. That may be one of the least discussed cruelties of the disease. A diagnosis does not affect only the body. It can change the economics of an entire household almost overnight. A patient who worked yesterday may be unable to work tomorrow. A husband, wife, daughter or son may have to take time away from employment to become a carer. There are journeys to hospital, meals away from home, scans, tests and medicines, together with dozens of apparently small expenses which become enormous when the family’s income is simultaneously disappearing.
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For people living close to the edge financially, cancer therefore delivers a particularly vicious equation: income can fall precisely when expenditure rises.
That is difficult enough. There is another burden that cancer patients should never have to carry.
They should not have to wonder whether the medicine they critically need will actually be available when they need it.
Sri Lanka’s public health system continues to provide cancer treatment to thousands of people, supported by doctors, nurses, pharmacists and other healthcare workers whose dedication can sometimes disguise the weaknesses elsewhere in the system. NEWSLINE has repeatedly heard of extraordinary kindness from nursing and medical staff. The people beside the hospital bed are very often trying valiantly to solve problems they did not create.
But kindness cannot replace medicine.
Sri Lanka has experienced shortages, procurement difficulties and regulatory controversies involving essential pharmaceuticals. NEWSLINE’s continuing investigation into Filgrastim has raised a particularly uncomfortable question about what happens when cancer medicine becomes caught between procurement, regulatory and administrative processes.
Officials can exchange letters. Institutions can dispute responsibility. Regulators can hold press conferences. Procurement agencies can explain contracts. Files can move from one desk to another.
Cancer does not wait for any of them.
For the patient sitting in Maharagama, the distinction between the regulator, procurement agency, supplier, laboratory and ministry is almost meaningless. That patient wants something considerably simpler.
The medicine.
Against that background, an extraordinary gathering this Saturday deserves considerably more attention than another entry in Colombo’s weekend entertainment calendar.
The Sri Lanka Cancer Society presents “Experiencing God A Musical of Hope” at the Cathedral of Christ the Living Saviour on Saturday, September 19, from 6.45 p.m. to 8 p.m. Around 700 voices will come together, including some 650 students from schools across Sri Lanka, standing in solidarity with children battling cancer.
The Music Ministry Choir will participate under the direction of Ishan de Lanerolle and Neranjan de Silva, with the De Lanerolle Brothers as soloists. Among the special guests will be children currently undergoing treatment, childhood cancer survivors and their families. Entrance is free, while donations and collections will go to the Sri Lanka Cancer Society.
The theme is faith, hope and courage.
Cancer patients require enormous quantities of all three.
But they should not require faith to believe that their medicine will be on the hospital shelf.
That remains the responsibility of the State.
There is, nevertheless, another Sri Lanka surrounding cancer which seldom attracts headlines. It is made up of the relative who wakes before dawn to accompany a patient to Maharagama; the friend who quietly finds the bus fare; the neighbour who sends some food; the benefactor who pays a bill; the nurse who stays a little longer; and the cancer survivor who tells a frightened patient that there can still be another tomorrow.
They cannot cure cancer. They can make the journey less lonely.
NEWSLINE has received several requests to give prominence to Saturday’s event, including from people affected by cancer and others trying valiantly to support them. We are more than happy to do so.
There is something particularly poignant about hundreds of children singing for cancer patients at this moment.
Patients have prayed for better treatment. They have prayed for medicines. Their families have prayed for another scan to bring good news. They have watched healthcare professionals do everything they can while occasionally confronting a pharmaceutical supply chain that has produced shortages, delays and regulatory controversies.
NEWSLINE has also been asking whether regulation has always been applied consistently. Patient safety must never be compromised, but neither should regulation become an excuse for administrative paralysis. Scientific regulation and rapid access to essential medicines are not opposing objectives. A competent regulatory system must be capable of delivering both.
Perhaps, having prayed for better service delivery and a dependable supply of medicine, some cancer patients are now turning to music and God’s grace for salvation.
Who could blame them?
Saturday evening therefore matters for reasons extending far beyond music.
Somebody sitting inside that Cathedral will know what it is like to receive a cancer diagnosis and immediately wonder whether they are going to die. Somebody else will know what it is like to wonder how the family will survive financially if they cannot work. Another will know the anxiety of waiting for treatment. Somewhere there may be a parent who would willingly exchange everything they possess for the assurance that their child will see another birthday.
And around them will be hundreds of young Sri Lankans singing.
That is worth supporting.
It is also worth remembering what must happen when the music stops.
The State must make sure essential cancer medicines are available. The regulator must regulate scientifically, consistently and urgently. Procurement must anticipate demand rather than repeatedly react to shortages. And the people running these institutions must remember that behind every batch number, tender, regulatory file and consignment is a human being measuring life rather differently from an administrator measuring time.
Because cancer doesn’t stop the bills. It can stop the wages though.
And no patient already carrying that burden should also have to carry the fear that when treatment day arrives, the medicine may not.Be that as it may.
