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Business of Life

Benita Sen

Looking aheadRetinoblastoma, a cancer of the eye, can cause blindness, even death, if left untreated. However, it is fairly easy to spot the condition’s telltale symptomsBenita Sen font size
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You’ve heard of blood cancer, cancer of the lungs, mouth, colon, cervix and breast. But cancer of the eyes? If you ask people at random, most of them would be incredulous that cancer can strike the eyes. Retinoblastoma affects a large number of children between the ages of one and five.
Till a few decades ago, this rare cancer that attacks the retina was considered fatal. Of late, however, early detection and medical and technological advances have turned that tide. Today, nine of 10 child patients can be cured in ‘advanced’ countries. In Europe, for instance, the five-year survival rate in children suffering from retinoblastoma went up from 85% in the 1970s to 90% in the 1980s and stood at 91% in the 1990s even while the incidence of retinoblastoma for the same period fell from 3.6 per million in the 1970s to 3.1 per million in the 1990s (Source:The Cancer Atlas published by the American Cancer Society).
Ocular oncology is a relatively new field of ophthalmology, and that perhaps explains to some extent why in India ocular oncologists see more of advanced retinoblastoma. An alarming number of general practitioners and even general ophthalmologists are not too knowledgeable about it. Says Dr Santosh Honavar, ocular oncologist at the L.V. Prasad Eye Institute, Hyderabad: “Delayed diagnosis of retinoblastoma is a problem unique to the developing world, and a problem that historically has poor prognosis.”
If detected early, the spread of cancer can be arrested, salvaging the eye, optimizing residual vision and, in extreme cases, saving a life. About 95% of children with retinoblastoma can be saved and vision kept useful in about 85% if the tumour is detected before the cancer destroys vital parts of the eye or spreads to other parts of the body, says Honavar.
Sadly, we still lose children to cancer that begins in the eye. In India, adds Honavar, cancer is among the leading causes of death among children below 14. Retinoblastoma and other eye cancers account for about 20-30% of all cancers; of these, about 30% cases are in children. In every 10 cases of retinoblastoma in children in India, about seven are unilateral or in one eye. While the disease can affect both eyes, cases where one eye is affected are generally detected by the time the children are about two or three years old. Those with both eyes affected are diagnosed between one and two years and seldom after they turn five.
An attentive adult, whether a member of the family, a doctor or a teacher, can save a child’s life. Take, for instance, the case of New Delhi’s Krish, who completed a year this March. He was about two months old when his parents took him to a paediatrician for diarrhoea.
One look at his eyes which could not coordinate, and the doctor suspected trouble. A specialist diagnosed retinoblastoma in both eyes. Krish was completely blind, a fact that his parents had not suspected since they did not know the symptoms. Treated for over 10 months, Krish has got back 50% vision in one eye and 20% in the other. He awaits a cataract surgery in June, after which he should be able to see better.
One of the surest indicators of retinoblastoma is to look at a photograph taken with a flash. Many parents have missed the healthy red glint in the child’s eye and consulted the doctor reporting a white reflex, only to confirm retinoblastoma. While most children with retinoblastoma appear like any other, attentive parents should watch out for the cat’s eye or a pupil that looks white and reflects light in what is called the cat’s eye reflex. Some children have a squint or persistent redness that comes with the cornea being clouded over, while some may have problems with their vision, even though they do not complain of pain in most cases. It may be difficult for the parents to detect poor vision in one eye, so check if the child resents closure of one eye at random. “This simple test can be done at home while the child is at play or watching television,” suggests Honavar. Some mothers suspect something wrong when they observe the eye bulge or move unnaturally.
What goes wrong and where?
As with some other cancers, retinoblastoma can be caused by the faulty Rb gene, which makes children more prone to bilateral retinoblastoma (affecting both eyes). That is why children born into a family with a history of retinoblastoma ought to be screened regularly till they are five years old. About one out of three cases are genetic, but several DNA mutations develop later in life. The retinoblastomas that are not inherited generally affect one eye. There is no conclusive evidence about what causes retinoblastoma. Nor is there any proven way of preventing retinoblastoma except by prenatal genetic diagnosis, which is recommended when there is a family history of the disease. So, till further research provides any conclusive answers, technically speaking, any child can get retinoblastoma even though statistics say that about one in 15,000 to one in 18,000 live births are diagnosed with it.
Although ocular oncologists work towards a day when they can restore complete vision and save the lives of every child, sometimes the treatment has to be guided by the fact that it is most important to stop the spread of cancer, even if vision cannot be preserved.
If the eye is removed, new techniques ensure implantation of a life-like prosthetic eye identical to the other eye that can even move on volition.
Retinoblastoma, when completely cured, does not often recur later in life. Nor does the treatment leave any significant long-term side effects. Which means, in a couple of years from now, Krish will be packing his books for school.
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PALLIATIVE CARE
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April 29, 2008
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The pain of Roshanara
By Benita Sen

Cancer patient Roshanara’s morphine tablets keep her relatively pain-free. Morphine is part of palliative care, which allows terminally ill patients to live a life of dignity, free of pain. Why, then, is it so scarce in India?

All we have is an address from the hospital records. As we scour the bylanes of the approximate locality in Lucknow, that proves insufficient. Up and down the lanes we wind looking for the home of a fruit seller. And then, just when we are about to give up the search, one young man remembers a woman in pain. He leads us to the door of Roshanara.

The door opens. A woman sits up in bed. “Doctor saab! It’s you!” she exclaims, her pain almost forgotten for a moment. “I heard your voice outside and couldn’t believe it was you,” she says as Doctor Shakeel, in charge of the palliative care unit of the King George Medical University Hospital, checks the swelling on her foot.

The pain in the blue-green painted room is palpable. Not just the physical pain of Roshanara, but the pain of her two daughters who see her suffer and wait to give her the next dose of the white pill that will relieve some of the suffering.

Roshanara has spreading bilateral breast cancer. She was first diagnosed with cancer about 14 years ago and responded to treatment. But she had a relapse recently and this time, the pain has been so bad, it has kept her bedridden.

She doesn’t know what the white pills by her bedside are, but she does know that these tablets have brought her immense relief. “That’s morphine,” Dr Shakeel says. Roshanara takes one every 12 hours.

“Before they started me on these tablets, I would shriek in pain,” she recalls. “Her cries could be heard down the gully,” remembers her daughter.

Morphine use in India

Morphine looks innocuous. But the issues behind it are not. Roshanara does not understand the chemistry of morphine, an opiate analgesic extracted from dried poppy pods and stems, first isolated in Germany in 1804. Its extraction and purification was patented by Hungarian chemist Janos Kabay.

As a pain killer, morphine does not cause any alarming side effects nor is it addictive, a fact that many doctors do not know, say activists working in palliative care. “There is the fear of misuse and the morphine falling into wrong hands (read, the drug mafia) but for that, policing needs to be stringent,” points out one activist.

The World Heath Organisation Collaborating Center for Policy and Communications in Cancer Care notes that approximately one million people experience cancer pain in India, every year. ‘Unrelieved pain not only affects the patient, but also the family and the community,’ it says. It also accepts that ‘morphine is an essential drug for cancer pain management’, as a safe and effective treatment for severe pain. Ironically, the study notes that ‘India supplies much of the opium to make morphine for increasing use in the rest of the world, but it produces very little for domestic use due to lack of demand.’

Demand from the powers that be, perhaps, not the end-user writhing in pain. India gets barely six per cent of the world’s legal morphine. Palliative care is needed not just by cancer patients but by those with several other chronic illnesses including AIDS. Morphine is also given to patients recovering from heart surgery. That translates to over two million patients suffering avoidable pain when the answer can be the cheap, effective morphine. The United States’ 2007 International Narcotics Control Strategy believes 20-30 per cent of India’s opium crop is diverted to the grey market.

The Narcotic and Psychotropic Substances Act of 1985 raised the stringency bar. Anyone found misusing morphine could be put behind bars. Every Indian state has its own version of the Act. As a result, between 1985 and 1997, there was a 97 per cent fall in the use of morphine. From 573 kg, it plummeted to 18 kg.

“Two or three generations of doctors have not used morphine,” points out Poonam Bagai, a cancer survivor, founder of CanKids…Kids Can, and the vice chairman of Pallium India.

What of the side-effects?

In a presentation during a recent workshop on ‘Addressing pain and palliative care through improved cancer pain policy’, in Lucknow, Dr Sushma Bhatnagar of Dr B R Ambedkar Institute-Rotary Cancer Hospital (IRCH) Delhi, made the point that “allergy and intolerance are rare”. The landmark Boston Collaborative Drug Surveillance Project, 1980 (by J Porter and H Jick) found that of about 11,882 patients who received opiods, only four became addicted and ‘only one of these cases seemed significant’. The report notes: ‘A patient’s need for escalating dose of a narcotic, due to a cancer or other chronic illness, is most often due to progression of the disease rather than addiction. Patients with stable disease can be maintained on the same dose for extremely long periods of time.’

Why suffer needless pain?

At a very basic level, palliative care addresses any pain. “Not many doctors, nurses, paramedics and other professionals involved in health care understand that,” says cancer activist Samiran Das of the Saktipada Das Memorial Foundation who is trying to offer pain relief as part of palliative care at a clinic in the Sunderbans, West Bengal.

The availability of pain killers for a routine headache or a gripe in the stomach could be taken as the rock bottom of the palliative care ladder. This perspective also helps one empathise with the need for pain relief – as an important part of palliative care -- for people with serious, life-threatening diseases.

Although the first National Cancer Control Programme (NCCP) was initiated in 1975, it was only in 1984 that it recognised pain relief as a basic service. The modern medical concept of palliative care was introduced in India only in the mid-1980s. While the government has had a role to play, a good amount of the infrastructure and care that is in place is due to the efforts of individuals, NGOs and international players, including the World Health Organisation.

In the 1970s, the medical community had to think beyond aspirin. Patients in excruciating pain were given pure opium dissolved in tea. This was effective but impractical, since the opium had to be collected frequently from the authorities. Oral morphine entered the scene around 1986. The first pain clinics opened in the Regional Cancer Centre, Trivandrum, and at Kidwai Memorial Institute of Oncology, Bangalore, and they dispensed oral morphine free of charge for the first time. The first hospice, Shanti Avedna, started in Mumbai in 1986.

Today, morphine is available for pain relief, but the process is cumbersome and time consuming. Even a hospital running a palliative care centre needs to take licences from about five departments. As K M Mishra of the Cancer Aid Society found when he tried to get 300 tablets for Sanjay Gandhi PGI, this can mean that by the time the morphine arrives, the permit has expired. Dr L Jaichand Singh, a professor at Imphal’s Regional Institute of Medical Sciences (RIMS) faced something similar when he ordered 10,000 morphine tablets that should have helped cancer patients be free of pain for about six months. By the time the licences were through, the company ran out of stock.

For patients like Roshanara, too, the pills are not easily available and her husband has to go far to get her doses. Dr M R Rajagopal, the chairman of Pallium India and widely acknowledged as the father of palliative care in India, says that oral morphine reaches less than one per cent of the needy.

A drop in the ocean

Even today, 21 years after it was first introduced in the country, palliative care has barely pushed beyond the metros to some state capitals and larger cities. In 2005, the Department of Health and Family Welfare of the Government of India appointed a task force of 15 experts to assist and advise in the framing of the National Cancer Control Programme for the next five-year plan. Palliative care was one of the six features looked into.

Palliative care includes not just the patient but patient support and support of the family, for whom care-giving and watching a near one in unbearable pain is traumatic. It is about reversing crippling pain and giving the patient the opportunity to return even to a near-normal, self-reliant and economically viable life.

On April 28, 2007, the activist group Pallium India wrote to Health Minister Anbumani Ramadoss that although the budget for the National Cancer Control Programme was likely to be raised to Rs 2500 crore, the focus was on awareness and early detection. There was no separate allocation for palliative care although the Palliative Care Task Force had recommended a budget of Rs 50 crore to develop palliative facilities at various levels, besides training medical professionals.

Pallium India feared that not much attention and resources would be given to palliative care. They were taken aback to learn from the secretary of health that it was hoped that early detection would make palliative care redundant in 10 years. Scientifically, this is a wish that is yet to be proved true even in the most medically advanced nations. As Pallium India’s letter had pointed out, the world statistics for palliative care is one out of every two cancer patients.

Not allotting sufficient resources to palliative care, says Dr Rajagopal, means the medical establishment “will be free to continue expensive, high-tech treatment, even when futile, as most of them do now”.

In July 2007, the Supreme Court admitted a public interest litigation by the Indian Association of Palliative Care (IAPC) demanding “improved access to palliative care for those who need it in the country”, and arguing for the right to life and death with dignity.

IAPC requested the Supreme Court to direct both central and state governments to develop a palliative care policy.

Teaching palliative care

The only hope for patients like Roshanara is concerted effort at all levels. “It is easy to blame the red tape and the government, but the medical and nursing professions at large, have not accepted palliative care as an essential part of health care,” says Dr Rajagopal. Palliative care needs to be included in undergraduate medical and nursing curricula; it has been referred to as the forgotten chapter in medical education.

Young medics like Dr Shakeel, who was selected for the Lucknow Palliative Care Centre, need to be exposed to palliative care. When he was asked to go to Kochi to train, he wondered what he’d learn in six weeks that he didn’t know from medical school. He came back transformed.

“I learnt to communicate with patients, to break the news of the diagnosis, to prescribe analgesics and morphine and adjuvants.” The stress, he believes, is still on curative rather than palliative, but few realise that the two can go hand in hand.

The concept of palliative care is going from the metros to smaller cities and villages, but will the morphine get there?

(Benita Sen is a journalist and author)

InfoChange News & Features, April 2008


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