Thursday, February 4, 2010


1st Indian Childhood Cancer Survivor Conference, 6 & 7 February 2010, New Delhi.
This conference will be part of worldwide celebrations of the 9th International Childhood Cancer Day and will host cancer survivors, patients, caregivers, doctors, donors and volunteers from all over India.

This conference aims to bring to surface unattended childhood cancer issues (Psycho-Social, Emotional & Physical) from the young patient’s point of view and ultimately to build a united voice for childhood cancer.
We know our caregivers do their best for us. But do they hear our voice? They talk over our heads about our treatment, options, what we must be feeling. They think that if they pretend “All is Well” we will not know we have the world’s scariest disease.
Do they hear us? For those of us who survived do they know what the impact has been, the memories we carry? If they ignore our pain, we will not feel it!

Ask young Sonu, now 16, survivor of ALL (blood cancer), who described the procedures during his LMP at 11 years of age… “4 of them used to hold my 4 limbs down and I lay spread-eagled like an animal…and the pain I felt was the worst imaginable. I will carry the scars lifelong.”
We ask that you help us create a talk show surrounding these often overlooked challenges that many childhood cancer survivors face. Some examples are:
The social implications of getting married for young girl survivors in a primarily arranged marriage setting
Entering into the workforce and deciding whether to tell employer
The delayed social and psychological side effects of arduous treatment and distressing memories
Extreme pain during treatment and the long lasting post treatment rehabilitation
Feeling alone and unheard
We will be able to provide an audience or talk show panel comprised of participants, support groups, local and national pediatric oncologists, patients and survivors. If possible, we wish to have this talk show on the afternoon of February 5th before our national conference.

We also invite you to attend our 1st Indian Cancer Survivor Conference on February 6th (3:30-7:00pm) at the Jawaharlal Auditorium @ AIIMS
Phone: 9711179772

Thursday, January 21, 2010



When stars from TRP topper serials face another camera, the message is important. Benita Sen on a film that should be seen more often.
INTRO: It’s a script that Ekta Kapoor may well want to touch upon. Three of her star performers stepped out of the television screen to anchor a different kind of film. The meaningful short, A Guide to Breast Self Examination is presented by the Forum for Breast Protection.
The 12 minute 41 second film owes much to many. Like, Dr KA Dinshaw, Director, Tata Memorial Centre & Professor in Radiation Oncology and her department at Tata Memorial Hospital, Mumbai and to a slew of doctors including Dr Ramesh Sarin from Delhi-based non-governmental organisation Forum for Breast Protection, working in the fields of preventing and detecting breast cancer since 2001. In an effort to offer holistic support to a woman, it has on its side doctors from various related disciplines who can help the patient reach out to all possible medical help that can begin with testing and detection to post-operative care.
Keenly conscious that a lack of awareness leads to late detection of cancer, the Forum aims to empower women with hope to make an informed choice and be checked regularly so that any malignant growth can be detected at an early stage. That’s when the chances of remission are much higher. Precisely what The Cancer Atlas published by The American Cancer Society prescribes: “Early detection of cancer includes… education and screening.”
Narrated by Apara Mehta (the mother-in-law of Tulsi in Kyonki Saans Bhi Kabhi Bahu Thi), Shweta Keswarni and Sakshi Tanwar (Parvati in Kahani Ghar Ghar Ki), it begins by trying to dispel the fear around breast cancer. A convincing survivor leading a normal life speaks of her experience even as the short drums home the point that, unlike HPV, breast cancer is not contagious. However, there is no room for complacence when we are dealing with a disease that is a leading cause of cancer in women and tops the list of fatal diseases in women between 40 and 50. In the West, eight out of ten breast cancer cases are diagnosed in the first and second stages. In India, where awareness is low, 80 per cent of the cases are diagnosed in the 3rd and 4th stages of the disease. This certainly reduces the chances of remission. While women over 40 are advised to go for a mammography every year and also to have an annual breast examination conducted by a specialist trained in breast diseases after they touch 30, breast self examination (BSE) is a monthly must for any woman over 20. The film aims to teach the viewer how to recognise the cancer in the initial stages.
In just 12 minutes and a little more, the film, directed by Karan Anshuman demystifies the crab. It touches on the risk factors for breast cancer, including personal history of cancer in one breast and family history of breast cancer. Then, there are the lesser known factors of reproductive risk. The older a woman is at the time her first child is born, the more she is at risk of breast cancer. Similarly, Hormone Replacement Therapy or HRT, recommended after menopause, is believed to push the risk of breast cancer up. Not many know that a woman’s menstrual history can have a bearing on her chances of getting breast cancer. A girl who begins menstruating before she is 12 and a woman who does not go into menopause by 55 and even those who have no children, are at an increased risk of developing breast cancer.
As in most other health problems, breast cancer is also affected to some extent by lifestyle factors. In fact, some factors may be so inter-linked that they are like the proverbial chicken and egg situation. Obesity, today’s Obnoxious O word, and physical inactivity are causes for concern.
An important message the film puts across is to avoid stereo-typing. Jumping to presumptions can defeat the very cause. And so, people need to be reminded that while some causal factors like a family history of breast cancer cannot be avoided, just ticking risk factors off against your medical history are not enough to predict that you will get breast cancer. The heartening news is, most women who do have the risk factors mentioned, will not get breast cancer. And for others, there is little room for complacence since, just as certainly, many women who do get breast cancer will not report a family history of breast cancer.
The film is interspersed with the message of hope, of not getting alarmed and of getting pro-active to catch the crab early and stem the tide. Caught in the early stages, the chances of surviving breast cancer are increasing.
With detailed graphics suggested by the legendary cancer hospital, Sloan Kettering and a case study of a doctor examining a patient, women are taught to check themselves by touch and visually for any abnormality. BSE needs some getting used to, since the breast is inherently uneven and the normal nodes may set the alarm bells ringing till a woman learns to identify what is normal in her body.
The message you leave with, as a survivor speaks of hope and of living a normal life after cancer, is that 19 out of 20 tumours are not cancerous. But then, none but the doctor can make that pronouncement.
A forceful message the film drives home is that cancer is a word, not a sentence.
If the number of breast cancer cases is rising, blame some of it on lifestyle. The Cancer Atlas observes that having the first baby later and fewer pregnancies are partly responsible. Current use of oral contraceptives pushes up the risk 24 per cent, although “the absolute risk in users of the pill is very small, and easily outweighed by the benefits of effective family planning.” HRT or hormone replacement therapy has also been held guilty. On the other hand, grandmother got it right when she advised breast feeding. As early as 1926, a report found, breast feeding protects against breast cancer. While lung cancer is the major cause of cancer among men, accounting for 965000 cases worldwide, breast cancer accounts for 1151000.
What about male breast cancer? Unknown to many, men also develop breast cancer, although the incidence is far, far less than that in women. For approximately every 99 women, one man may develop breast cancer. According to a Reuters bulletin, the outcome of breast cancer is similar in women and men.

Keep an eye on your child’s eyes: that white spot might be cancer

Keep an eye on your child’s eyes: that white spot might be cancer

Published in


It was the third World Retinoblastoma Awareness Week from 10-16 May 2009. Time to take a look at a disease that is not be so deadly if diagnosed early

About 1500 children are diagnosed with a rare eye cancer, or retinoblastoma, every year in India. If an average Indian classroom has 50 students, the number afflicted with retinoblastoma would cover one whole school each year.
The irony is, many of these children diagnosed with retinoblastoma will never go to school. Retinoblastoma primarily affects children between the ages of one and five years. Sadly, most of these children could have been learning their standing and sleeping lines if one informed adult had given a seemingly innocuous eye problem more thought.
According to Santosh Honavar, ocular oncologist with LV Prasad Eye Institute, Hyderabad, and one of India’s most highly regarded retinoblastoma specialists, “The lives of 95% of children who receive protocol-based treatment can be saved.” Treatment can save the eyes of at least 70% of the children diagnosed overall. That’s 2,100 eyes saved every year. For the others, the only viable option is to remove the eye.
The reasoning sounds simple; but reality, whether in rural India or the national capital, is different.
What that long word means
Retinoblastoma is literally cancer that attacks the retina. Till a decade or so ago, this rare condition was fatal since just 3 of 10 advanced cases were curable.
Also Read more about retinoblastoma in our earlier article ‘Looking Ahead
Advancements in early diagnosis and in treatment made it possible to cure 9 of 10 patients. In the last few years, say experts in India, the introduction of new treatment techniques such as periocular chemotherapy with nanoparticles has ensured that the vision and lives of 70% of children with advanced retinoblastoma are saved. This is a huge jump from the earlier 30%.
When ignorance is not bliss
Sadly, the 30% of children who lose their vision or even their life to retinoblastoma are not entirely let down by technology being beaten by a raging tumour. “The major loose link in retinoblastoma is the delay in diagnosis,” points out Dr Santosh Honavar, who continues to see patients in advanced stages. As you read this, Shreyas Barthwal of NOIDA, just 22 months old, battles retinoblastoma.
His parents were concerned about a squint in the right eye of their two-month-old baby and took him to several established hospitals, but paediatricians dismissed the squint as innocuous. Shreyas also had white flecks on his eye ball from the time he was a few months old. By the time the cancer was detected and treatment began at LV Prasad Eye Institute, Shreyas, an active and seemingly healthy baby, was about 18 months old. The tumour had spread to both eyes by then. While the average eyeball measures about 25mm across, the tumour in Shreyas’ right eye was 20mm. The right eye may have suffered irreparable damage, those treating him fear. Doctors are trying to save what they can of his left eye.

The Barthwals are coming to grips with the harm that the delay in diagnosis has caused. Says Shreyas’ father Naveen Barthwal, “My anger and agony are directed at the paediatricians we go to for routine vaccinations. They are authorized to treat the child, and it is their duty to spot minor abnormalities and conduct a complete examination of the child.”
Vijay Anand P Reddy, Director, Apollo Cancer Institute, Hyderabad and Consultant Oncologist, L V Prasad Eye Institute, Hyderabad, agrees: ”For children in the 0-4 years age group, the primary physician is the paediatrician: It is quite likely that every parent takes the child to see a paediatrician for either vaccination, a common cold or other problem. So I feel that paediatricians should be alert and consciously look into the eyes of the child who is in their care”. And it is incumbent on them to do so even when the parents do not report an eye problem.Yet, the eye check is often overlooked while doctors peer into problems of the ear, throat and nose. Just “asking the parents a question or two… will help the paediatrician identify if the child requires a complete eye examination,” adds Dr Reddy.
Vasantha Thavaraj, from the Department of Paediatrics, All India Institute of Medical Sciences (AIIMS), Delhi is also Deputy Director (Indian Council of Medical Research). She has seen over 1,200 cases of retinoblastoma since 1990. Dr Thavaraj says, “Even ophthalmologists have misguided parents by prescribing eye drops for up to one year.”
Spreading the word
Some hospitals, such as AIIMS, are stepping up awareness drives among the lay parents as well as among doctors. The L V Prasad Eye Institute has distributed posters in Hindi, Telugu and English among paediatricians and ophthalmologists in Andhra Pradesh. And the initiative is working. Dr Thavaraj, who has spearheaded several awareness camps, has seen a change since 1990. “Earlier, I’d see patients in the advanced stage 4 all the time... Now, more than half the cases I see are intraocular retinoblastoma, which is a much earlier stage and curable. About 40% are advanced extra-ocular cases.”
Dr Thavaraj is now studying the possibility of introducing an eye screening programme with the mandatory immunization schedule. He would like to see each child have a separate eye health card and get screened for retinoblastoma. “I hope to train district-level doctors, including paediatricians, through workshops repeatedly for a year and then see how it goes.”
She has already carried out something similar in Najafgarh, Delhi, screening 700 children at the district hospital after their pulse polio immunization in 2005.
Two years down the line
That would bring some peace to the Barthwals who now spread the word about early symptoms of retinoblastoma wherever they can. “We cried all day when we learnt about Shreyas’ tumours,” recall the Barthwals. Through the six cycles of chemotherapy, they “wept and shattered a thousand times”. Because they know now what Dr Reddy points out: “With early diagnosis, we will be able to save the life of the child, the cancer can be treated so that the eyes are not removed and the child’s eyesight can be protected. The paediatrician is key to early diagnosis of retinoblastoma.”
Watch out!
Make it a habit to observe children’s eyes. Get them checked if you notice:

• ‘cat’s eye’ or a whitish pupil that reflects light
• a squint
• photograph shows no healthy red glint in the pupil (deplored as ‘red eye’, this is actually a sign of a normal retina)
• a spot growing on the iris
• a bulge in the eye
• unusual or uncoordinated eye movements
• complaints of floating spots or flashes of light
• a family history of retinoblastoma (the faulty Rb gene can lead to bilateral retinoblastoma, which affects both eyes: one of three cases is genetic, so if there is a family history, screen the child regularly until she is five years old)

Counting on curcumin

Counting on curcumin

Published in


Turmeric has many advantages. A pilot study on its efficacy in fighting the virus that causes cervical cancer could have significant impact

By Benita Sen

The number may seem small, but the impact promises to be significant. At a health clinic in the Sunderbans, West Bengal, Najmun Nahar and a team from Kolkata’s Chittaranjan National Cancer Institute (CNCI), are beginning the world’s first curcumin trial to fight cervical cancer, mostly caused by HPV.
What is HPV?
The human papilloma virus (HPV), an umbrella term for more than 100 viruses found till now, is the most common cause of cervical cancer. It is mostly transmitted through sexual contact. “HPV is the most common sexually transmitted infection in the world,” observes P.S. Basu of CNCI. It seems to affect young people more. A monogamous woman may pick it up from an infected partner. “Unfortunately,” points out Dr Basu, “there is no treatment for the HPV infection till date.” The good news is that most HPV infections are overtaken by the body’s immune system. The bad news is that some cannot fight back.
There are fears that HPV may cause not just cervical cancer but also cancers of the breast and mouth. The Cancer Atlas also mentions respiratory cancers caused by HPV.
Women are most at risk
Dr Basu says: “About 1 lakh women die of cervical cancer in India, every year. Yet, it is preventable at the pre-cancerous stage.” At that stage, it gives doctors a lead of about 10 years before the cancer sets in.
The researchers are trying to find out if curcumin works in fighting HPV. It will be available as a vaginal tablet or cream.
Advantage curcumin
The pilot project of a clinical trial of curcumin began in September 2007 under the aegis of the department of biotechnology (DBT). The other projects are being conducted by the Institute of Cytology and Preventive Oncology (ICPO), Noida, and the Tata Memorial Centre in Mumbai.
What curcumin does
Curcumin is the main extract of the turmeric plant (Curcuma longa) and is not patented. Bindu Dey of DBT explains, “Curcumin is a potent anti-oxidant, anti-inflammatory component.” DBT picked up this compound for clinical testing in squamous cells carcinoma, (a form of skin cancer) after a large number of in-vitro (laboratory) and in-vivo (in a living organism) studies.
Although turmeric has been described in Ayurveda as a treatment for inflammatory diseases, curcumin, a yellow pigment in turmeric, has many pluses. It binds to a variety of proteins to inhibit the activity of various enzymes. It has anti-biotic properties and has been found effective against HPV. It scavenges for free radicals, and stalls DNA damage. Dr Basu says: “HPV is a local infection. So a locally applied agent may be able to clear the virus.”
The flip side
In 2005, S. Kawanishi, S. Oikawa and M. Murata of the department of environmental and molecular medicine, Japan, noted that curcumin is a “double-edged sword”. While it does have anti-cancer properties, they says it can also be carcinogenic as it “exerted pro-oxidant properties after metabolic activation”. Bhudev Das, director of ICPO since 2004, disagrees. DBT is just as convinced. “It is protective against any cancer,” says Dr Das. “There are thousands of anti-oxidant herbal agents, but most are in a crude form. Curcumin is the only product that is marketed in the purified form. So it is unlikely to vary.”
A new chapter?
“Our hypothesis is that it would clear women of HPV infections. If it is proven to be so, it (curcumin) has the potential of being the first therapeutic molecule against HPV infection,” says Dr Dey of DBT. Curcumin may not be available over the counter for another few years. But once it is, it promises to change things.

Women smokers: One puff too many

Women smokers: One puff too many
Published in
The figures continue to rise, the statistics continue to shock. Clampdowns, bans and skull-and-bone warnings on cigarette packets don’t seem to deter the growing number of women smokers
by Benita Sen
Rajiv Parakh, chairman, department of peripheral vascular and endovascular surgery at New Delhi’s Sir Ganga Ram Hospital, is worried. “Over the last decade, there has been an increase in the number of women taking to smoking. Look around in cafes, hotel lobbies, offices, bars and restaurants, and what you see speaks louder than available statistics.” Loud enough, he says, to merit more than ordinary concern.
Disturbing trend
According to a World Health Organization study, First Report on Global Tobacco Use, released earlier this year, one in every 10 women in India smokes or chews tobacco.
In a nationally representative study of smoking in India, conducted by the New England Journal of Medicine in February, more than 62% of women smokers in India will die in their productive years, compared with 38% of non-smokers.
More than 20% of these are at risk of contracting respiratory diseases, 12% are vulnerable to heart attacks, and 9% to tuberculosis, the study states.
Other Survey also suggest that since the 1990s, more women than men started smoking in the crucial adolescent years. A study done by the All India Institute of Medical Sciences (AIIMS) in 2006, on 6,000 students across 32 schools in Delhi and Chennai, showed that 20% of the girls in class VI are lighting up.
A new generation
The big cities, say medical professionals, are the biggest offenders. In Delhi, for instance, class XI girls whose mothers have not smoked a single cigarette can expertly blow smoke rings. Urvashi, 17, started smoking after class X Board exams to be a “trailblazer”.
Komal, 19, says she started smoking because she wanted to beat the boys at their game. Manya, 19, who began working after school and took up a correspondence course, smokes because she can “afford” it and because it “looks smart”. Samita, studying to be a chartered accountant, picked up the habit just after school to “beat stress”.
But, are these youngsters aware of the effects of smoking? “Of course,” says Paramita, a third-year college student in Delhi. She says: “I know it causes cancer. But only if you smoke till you are old. It’s safe if I stop by 50.”
She’s 19, and has been smoking for two years. Paramita knows that smoking can affect her lungs. She’s heard of lung cancer. But, peripheral artery disease? “What’s that?” she laughs.
Deathly drags
Tobacco smoke contains at least 1,400 chemicals. Besides the poisonous carbon monoxide, the nicotine in tobacco makes it addictive because it increases the level of feel-good dopamine.
Some cigarettes also include ammonia to increase nicotine absorption. That, say experts, is what narrows and, ultimately, hardens arteries, and plays havoc with heart rate and blood pressure.

Action on Smoking and Health, a registered public charity in the UK, quotes a BBC report that warns the chemicals that smokers inhale. These include cyanide, benzene, formaldehyde, methanol (wood alcohol) and acetylene.
Smoke contains harmful gases such as nitrogen oxide and carbon monoxide. According to the study by the New England Journal of Medicine, an estimated 20% of all male deaths, and one in 20 of all female deaths between 30 and 69 years, will be caused by smoking by 2010.
That’s more than any other cause of death.
Quit to win
The earlier you start smoking, the more the number of years that you smoke, and the number of cigarettes you smoke each day—all these add to the risk of health problems.
One World Bank study warns that most new smokers “underestimate the risk of becoming addicted to nicotine.” If they can’t quit, “half of the long-term smokers will eventually be killed by tobacco, and half of these will die in middle age”.
Dr (Col) R. Ranga Rao, senior consultant, medical oncology, Rajiv Gandhi Cancer Institute and Research Centre, Delhi, says that it’s a time bomb we’re puffing on. “It’s never too late to quit. You’ll start feeling better within 24 hours.
“Two days after you quit, your risk of a heart attack will start decreasing. And that’s just the beginning,” he adds.
Women are as susceptible as men to all smoking-related diseases; here’s a list of what they need to be additionally careful about
Dr Rao says, “Smoking causes more breathing difficulties in women than in men.” It is not asthma alone; women smokers are also susceptible to chronic obstructive pulmonary disease (COPD), believed, until recently, to be more likely to strike men. COPD shows up in symptoms such as frequent colds, a stubborn cough, phlegm, shortness of breath and breathing problems. According to a study by Norway’s National Institute of Public Health, the amount of chemicals a woman smoker draws in is the same as men do. However, as most women are smaller built than men, their breathing systems take in a higher concentration of the poisons.
Research suggests that the risk of cardiovascular disease, including heart attacks and strokes, increases at least fourfold for women smokers above the age of 35 compared with non-smoking women in the same age group, among those who use oral contraceptives. Medical experts in the US recommend that no oral contraceptives should be prescribed to women above 35 who smoke 15 or more cigarettes a day.
A number of studies suggest that women who smoke have lower fertility. Women smokers who have stopped taking contraceptives show a reduced rate of fertility as compared to non-smokers who have. According to one study conducted in Queensland, smokers who enrolled for IVF-ET (in vitro fertilization and embryo transfer) have a poorer outcome than those who don’t smoke. Smoking women produce fewer oocytes (immature eggs), have a pregnancy rate less than half that of non-smokers, and have more chances of miscarriages, the same study adds.

Women who smoke are more prone to secondary amenorrhoea (absence of menstruation) and irregular periods, according to a report by the US department of health and human services. Such women are also more likely to experience unusual vaginal discharge or bleeding, and reach natural menopause one to two years earlier than non-smokers or ex-smokers, it adds. This is due to a toxic effect on the ovaries caused by smoke exposure, or the significantly lower levels of oestrogen in smokers.
As with men, cigarette smoking contributes to osteoporosis, an increase in bone fragility that accompanies ageing, in women too. Because of its effects on oestrogen, smoking reduces bone density: A study suggests that women who smoke up to 20 cigarettes in a day through adulthood will have reduced their bone density by around 5-10% by the time they reach menopause, compared to non-smokers. This deficit in bone density is enough to increase the risk of fractures.
Women smokers are more susceptible to cancers of the cervix and vulva. Evidence also suggests that passive exposure to smoking is a risk factor for cancer of the cervix. A 1991 study published in ‘American Journal of Public Health’ suggests that even low exposure to environmental tobacco smoke has systemic effects.
Nicotine, carbon monoxide and other toxic constituents of tobacco smoke cross the placenta readily, directly impacting the oxygen supply to the foetus, and the structure and function of the umbilical cord and placenta. A number of tobacco smoke constituents that cross the placenta are known carcinogens. Nicotine also has a direct effect on foetal heart rate and breathing movements. It is also found in the breast milk of women who smoke. Maternal smoking also predisposes the child to respiratory illnesses, and parental smoking has been linked with decreased pulmonary function and asthma in children.

Virus alert: this one could cause cancerL HPV

Virus alert: this one could cause cancer
This is a virus as deadly as the HIV and as common as the cold. A German virologist who has shown that the human papilloma virus (HPV) triggers cervical cancer shares the 2008 Nobel prize (for physiology or medicine)
by Benita Sen
It’s the year of the virus. The Nobel Prize for physiology or medicine for 2008 is shared by French researchers Luc Montagnier and Françoise Barré-Sinoussi, and German virologist Harald zur Hausen for “the discovery of two viruses of great importance in diseases for humans”, according to a statement by the Nobel Committee. Montagnier and Barré-Sinoussi’s conclusion that the human immuno-deficiency virus (HIV) causes AIDS, and Prof. Hausen’s discovery that the human papilloma virus (HPV) causes cervical cancer have armed mankind in its fight against these two dreaded diseases.
Stemming infection: Bhudev Das with German virologist Harald zur Hausen.
SWe know about the deadly HIV. But HPV? Most of us haven’t even heard of it. But a growing number of doctors from all over the world have started believing that HPV is an equally deadly virus. Worse, it is as common as the cold, anywhere in the world.
HPV and cancer
Not many of us know viruses can cause cancer. The hepatitis B and C viruses, for instance, cause liver cancer. The human T-cell virus causes T-cell leukaemia and the human herpesvirus 8 (HHV8) causes Kaposi’s sarcoma. Now, thanks to Prof. Hausen’s pioneering work, the world knows that HPV triggers cervical cancer.
Youngsters, beware
According to the American Cancer Society (ACS), HPV is transmitted largely by an infected sexual partner. “About one-half to three-fourths of the people who have ever had sex will have HPV at some time in their life,” it says.
Also Read Counting on curcumin
HPV also finds a ready host in younger people. In the US, for instance, virtually one in two HPV-infected people is below 25. Studies suggest that most sexually active men and women will contract HPV at some time in their lifetime. The good news, though, is that most will never even know it and the virus does not always cause disease. Often, the body clears up HPV infections on its own within two years or less.
Cervical cancer, however, is largely incurable. It goes undetected in developing economies where there are no facilities for early detection. Incidentally, according to World Health Organization, since developing countries do not have a mandatory screening programme (the pap smear test for women, for example, and anal pap smear tests for men), they account for 80% of cervical cancer cases worldwide.
Pioneering work
Prof. Hausen, from the German Cancer Research Center in Heidelberg, cloned the virus in 1984. Says Dr Bhudev C. Das, professor of biomedical sciences, Ambedkar Center for Biomedical Research, University of Delhi, and formerly founder director, Institute of Cytology and Preventive Oncology (ICPO) of the Indian Council of Medical Research, Noida: “In spite of the fact that the two high-risk and carcinogenic HPV types 16 and 18, against which two vaccines have been developed, were cloned by Prof. Hausen and his group in the late 1970s, his work was not given much importance compared to HIV, HBV and other viral diseases for more than a decade.” Experts claim that the HPV vaccine offers 95% protection from the HPV 16 and HPV 18 viruses.
HPV vaccine
India’s first vaccine to help prevent cervical cancer caused by HPV was launched recently by MSD Pharmaceuticals (India), the local affiliate of Merck & Co., Inc. of the US. The vaccine, Gardasil (Quadrivalent Human Papillomavirus Vaccine, against Types 6, 11, 16 and 18), helps prevent diseases such as cervical cancer, abnormal and precancerous cervical lesions, vaginal lesions, vulvar lesions and genital warts, all caused by these types of HPV. It is recommended for women between 9 and 26 years of age.
Do I have HPV?
Although genital HPV infection is very common, most of us, except those who develop genital and anal warts, do not know we are carriers. At a later stage, an infected woman may complain of irregular bleeding or bleeding after intercourse. Ironically, the warts are caused by the lower-risk HPV variants, HPV 6 and 11. The high-risk HPV 16 and 18, on which Prof. Hausen has been working and which accounts for about 70% of cervical cancer cases (source: ACS) and cancers of the genital region, show up as cervical lesions, on the way to morphing into cancer. HPV also causes some cancers of tonsils and tongue.
Research in India
The elected president of the Indian Association for Cancer Research for 2006-2009 and recipient of the President’s Medal for the Dr B.C. Roy National Award, Dr Das has worked with Prof. Hausen for several years. He says HPV is present in almost 98% of Indians. His work with herbal preparations such as curcumin (found in turmeric) to counter HPV (reported in Mint earlier, see bottom left) is now in the clinical trial phase. Other cures he is exploring include Praneem, a polyherbal product used against HIV too.
Dr Das says: “In spite of the Nobel Prize and the realization that HPV infection and cervical cancer incidence in India is the highest in the world, it is time we launched a mass awareness programme even among doctors, healthcare workers, public health personnel and NGOs, a majority of whom are ignorant of HPV. The message must reach the youth, who are most susceptible to HPV.”
HPV & You
Genital HPV travels from one person to another through vaginal and anal sex. In the absence of a mass vaccination programme or proper screening, Dr Das warns that the changing sexual behaviour, early exposure to sex and multiple sexual partners are dangerous signs for India
5,00,000: The number of people affected by HPV every year. The American Cancer Society suggests that it is the second largest cause of cancer among women worldwide.
74,000: The number of women who die due to cervical cancer in India. This is more than one-fourth of the deaths attributed to the disease.
2.5%: The percentage of lifetime risk of women in India getting this cancer. This is almost double the risk compared with the worldwide figures (1.3%).
One-in two: HPV-infected persons in the US is below 25, according to the American Cancer Society
One-half to three-fourths of people who have ever had sex will have HPV at some time in their life, studies suggest.


Retinoblastoma, a cancer of the eye, can cause blindness, even death, if left untreated. However, it is fairly easy to spot the symptom's telltale symptoms.
by Benita Sen
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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Wednesday, January 20, 2010

Health Enemy Numero Uno

Health Enemy Numero Uno
Published in Deccan Herald
Benita Sen
Tobacco has been smoked or chewed for thousands of years. And yet, the knowledge of the huge health dangers from this plant is rather recent, laments Benita Sen

As an amateur gardener, one is often looking for ‘green’ or organic ways to keep the garden pest-free. Perhaps the most lasting home remedies for pests is tobacco water. Most stubborn invaders balk at the treatment.That is one indication of the damage tobacco can wreak. Little wonder, then, that two philanthropists got together to fight the use of tobacco across the world. On 23 July 2008, Michael Bloomberg and Bill Gates pledged $500 million “to help governments in developing countries” reduce the use of tobacco.New knowledgeAs Bill Gates pointed out about his involvement with the scheme, “Tobacco-caused diseases have emerged as one of the greatest health challenges facing developing countries.”To many of us, the operative words there are “have emerged.” This knowledge is barely a couple of generations young. Tobacco has been smoked or chewed for thousands of years. And yet, the knowledge of the huge health dangers from this plant is rather recent. Millions of people in ours and several other countries, in the 40+ bracket, took for granted the notion, perpetrated by films, advertisements and other media, that smoking is hip and happening.If you grew up goggle-eyed as Clark Gable sauntered across the scene, the cigar was not far from your consciousness. If you tramped to movie halls to catch Hindi films, you imitated icons like Dev Anand and hummed his Hum Dono song, har fikar ko dhoonye mein udata chala gaya as a yardstick of nonchalance.The more bindaas would opt for a beedi. Our generation may not have imagined we’d live to see a film titled No Smoking. We did not know that tobacco could be that harmful. Not till we were adults. Not because science hadn’t caught on, but because the news had not been disseminated as much as it has been in the next few decades.Long historyThe realisation of what imbibing tobacco can do, is almost a century old. In 1911, Dr Isaac Adler (1849 – 1918) raised the first suspicion that tobacco was linked to lung cancer.That inkling may be as pathbreaking as Dr Ronald Ross’ 1897 comprehension of a link between mosquitoes and malaria. August 20, the day of Ross’ realisation, is earmarked as World Mosquito Day. May 31 is earmarked as World No Tobacco Day but given the dimensions of the problem, perhaps tobacco could have more days earmarked to drawing attention to its dangers.Just three years after Adler, a concerned Thomas Alva Edison wrote to Henry Ford expressing his fear that cigarettes are dangerous to brain cells, although he noted that the danger "comes principally from the burning paper wrapper” which produces acrolein, a toxic, instable aldehyde that is a known lung irritant and a suspected carcinogen in humans. “Unlike most narcotics,” warned Edison, who did not employ smokers, “this degeneration (of brain cells) is permanent and uncontrollable.”One of the most convincing findings came in the middle of the last century. In 1950 Dr Morton Levin of the Department of Epidemiology noted in a study what many before him had suspected: tobacco was linked to lung cancer.Newer findingsBut now that tobacco is recognized as a health enemy, it is crawling camouflaged into products you and I may not suspect as dangers. Prabha Chandra and Uzma Mulla of NIMHANS pointed out in their 2007 report, ‘Areca Nut: The hidden Indian ‘gateway’ to future tobacco use and oral cancers among youth’ (Indian Journal of Medical Sciences vol 61 issue 6), Indian youth are faced with a new enemy their parents were not up against: camouflaged deadlies like areca nut and tobacco in most brands of pan masala.What is alarming is that the perceived respectability of pan masala makes it a deadly gender equalizer: although fewer Indian women smoke, both men and women consume pan masala with equal fervour. The gender inequity does not stop there. According to the Bloomberg Foundation, “On average, male beedi smokers lose about 6 years of life, (while) female beedi smokers lose about 8 years of life.”The buck stops hereDoes all this knowledge mean we are better armed to fight the deadly leaf? Yes and no. Studies have found that most developed countries reported a fall in the sale of cigarettes among those with more education. Logical, since self-preservation runs strong in all forms of life.But that’s where the truism ends for us. This is the opposite in India. Even the World Bank notes in Economics of Tobacco in India, “As the education increases, (people) in urban and rural households with a higher education smoke more cigarettes compared to lower educated households.”The answer to this perplexing trend could lie in the newly-found purchasing power that makes one throw caution to the winds. Perhaps these consumers could be reminded of the findings shared by the Campaign for Tobacco-Free Kids, “Tobacco use is deadly.” In any form. Whether as cigarettes, beedis, gutkha or even the innocuous pan masala. Period. We cannot afford to lose 2,200 Indians every day because of a tobacco-related disease.
Painful facts
By Benita Sen
Over 7 million people in India suffer avoidable pain simply because they have no access to morphine, says a Human Rights Watch report on India’s obligation to ensure palliative care
On October 29, 2009, Diederik Lohman of Human Rights Watch, an independent organisation going back 30 years, released his findings in Unbearable Pain: India’s Obligation to Ensure Palliative Care. For those following the state of palliative care in the country, the report contains few surprises and reinforces what has long been argued: that India has a lot to do to fulfil its obligation to people experiencing excruciating pain.
Over 7 million people in India (Human Rights Watch) suffer avoidable pain simply because they have no access to morphine. The pain can be so crippling that many patients say they’d prefer to die. Indeed, some of them have taken their own lives, says Dr M R Rajagopal, chairman of Pallium India Trust (Tel: 0471-3257400), considered one of the pioneers of the palliative care movement in India.
People in agony are often unseen and unheard because they drop off the social radar, unless they happen to be family or close friends. They are people battling life-threatening conditions including cancer, HIV/AIDS, tuberculosis and renal disease. Many paraplegics too suffer extreme pain.
The Human Rights Watch study was conducted over one year in various parts of India including Kerala, Rajasthan, Andhra Pradesh, West Bengal, Delhi and Uttar Pradesh. The report highlights that besides Kerala (India’s palliative care capital, where most of the credit goes to individuals and private organisations more than government organisations), most of India, from state governments to the medical fraternity, has failed to recognise the need for palliative care, let alone act on it.
Palliative care is an intrinsic part of modern medicine. But in India, it is not part of the medical school curriculum beyond the occasional mention. Unlike curative medicine, the aim of palliative care is to enhance the quality of life of anyone in pain. As Harmala Gupta, cancer survivor and founder of CanSupport (helpline number: 011-26711212), the first free palliative care home support service in north India, points out, palliative care can be hospital-oriented or home-based. “Pain is total, it is physical; it is the pain of fearing separation from your family; the pain of unrealised dreams.”
Palliative care begins with physical pain relief and goes into the psychological, social and spiritual spheres. It can be limited to the patient or extended to the family, caregivers and even palliative care volunteers shaken by the pain and suffering they see during the course of a working day.
Harmala, who suffered intense pain whilst battling cancer, is convinced that palliative care and pain management are “not for the end of life but necessary from the word go. Most doctors are too busy trying to cure the patient. The pain does not seem important in the context of fighting the disease. But for the sufferer, the pain is a palpable reality. It is scary”. Most of this pain is too intense to be treated by analgesics and OTC painkillers.
Many of us are made to believe that pain is a natural part of disease. Perhaps that’s why there are so few pain clinics in India. A pain scale measures the fifth vital sign of the patient’s physiological condition, after temperature, pulse rate, blood pressure, and breathing rate. But how many doctors use this established method to measure the level and extent of a patient’s pain?
Constant and intense pain -- needless pain, as any palliative care expert would tell you -- affects the patient, the caregiver, the family, even the neighbourhood. As breast cancer patient Roshanara once explained to me, before she was put on morphine the pain was so excruciating that her screams could be heard down the lane. The pain of one sufferer can affect several people.
Unbearable Pain: India’s Obligation to Ensure Palliative Care explains: “Persistent pain has a series of physical, psychological and social consequences. It can lead to reduced mobility and consequent loss of strength; compromise the immune system; and interfere with a person’s ability to eat, concentrate, sleep, or interact with others. A WHO study found that people who live with chronic pain are four times more likely to suffer from depression or anxiety.”
The uses of morphine
Morphine is an opioid derived from poppies. India is one of the largest legal producers of opium. It is also one of the largest exporters of the opiate. Morphine needs to be controlled globally to avoid its misuse as a narcotic. Today, the reality in India is: if the farmer growing poppy is stricken with unbearable pain, he may not get morphine to assuage it! Or, he may have to buy it off the black market.
Morphine is also shrouded in misconceptions such as ‘morphine is addictive’. “It is certainly not,” clarifies Dr Nagesh Simha, president-elect of the Indian Association of Palliative Care. Research has proved that once the pain is no longer there, almost all patients do without it. Medically, morphine is administered in tablet form, where addiction rates are low. Dr Rajagopal says: “In Kerala, we monitored 1,723 patients who had been administered morphine at home. There was no addiction, misuse or diversion to illicit channels.”
Although the distribution of morphine must be strictly monitored, as the 1998 department of revenue report recommends, states need to find a solution so that they don’t deprive those who truly need it. In 2008, only around 40,000 of the million-odd cancer patients were administered morphine.
The solution is “in plain sight: the government must integrate palliative care into hospitals”. Let’s hope this report drives the point further home.
Dr Rajagopal is convinced that a society’s humaneness should be measured by the extent of palliative care in that society. Diederik Lohman says that in countries like the Netherlands and USA, morphine and other pain control medicines are readily available. It is “inconceivable that cancer care hospitals should have no morphine”.
Sharing her experiences, Dr Gayatri Palat of MNJ Institute of Oncology, Hyderabad, calls palliative care is “the missing link in the development of medicine”. The general consensus among health workers is that our government, like those of most other advanced countries, must come out with a palliative care policy and integrate it with routine treatment. After all, this “horrific” pain, described by one patient as “a thousand times worse than a normal headache”, is completely unnecessary.
Subair’s story
Palliative care is not just for those whose condition is beyond medical intervention. It can help thousands of people lead a meaningful, productive life even as they are being treated.
When Subair was 21 he was diagnosed with a tumour that forced him to undergo an amputation of his foot in 1979. In 1985, when the cancer spread, he underwent a second amputation, this time above the knee. In 1992, the cancer recurred, this time with a terrible pain that kept him away from work. He stopped earning and had to send three of his four children away to an orphanage.
Two years later, when the Pain and Palliative Care Clinic in Calicut Medical College opened, Subair was put on oral morphine. Since then, he has been running a coffee-vending machine in the hospital, provided by the palliative care unit as part of his rehabilitation. Pain-free and economically independent, he was able to take his children out of the orphanage and ensure that they got an education.
As Subair’s disease continues to progress, his morphine requirement has risen to 600 mg a day. “The eldest son is now working and a daughter has married,” says Dr Rajagopal. Subair’s case is so convincing he was recently asked to address a group of medical students. The session went on for 90 minutes.

Vital statistics about palliative care
Kerala is India’s premier state in palliative care. It has around 140 palliative care centres.
18 of the 29 government-run regional cancer centres in other parts of the country do not have medical personnel trained in palliative care and counselling; nor do they administer morphine.
Training is important as there are different kinds of pain, some of which may worsen with morphine and require other forms of treatment.
In India, about 70-80% of cancer patients are beyond treatment and need palliative care. The cancer budget, on the other hand, is hugely tilted towards treatment and has no separate allocation for palliative care.
Palliative care and pain management rely much less on technology than the treatment of diseases that are accompanied by unbearable pain.
Palliative care is low-budget compared to other cancer medication. The cheapest morphine tablets cost less than Re 1 per 10 mg but can go up to almost five times as much, depending on the manufacturer. “An average patient needs about 70-100 mg a day,” says Dr Rajagopal. That’s about Rs 200 every month. Since morphine is almost always taken with other palliative care medicines, the daily medicine expense could be Rs 25-40. Dr Ambika Rajvanshi of CanSupport estimates their patients need morphine worth between Rs 2,000 and Rs 8,000 a month.
Andhra Pradesh, that has the highest number of people with HIV/AIDS, has one palliative care centre.
(Benita Sen is a journalist and author)
Infochange News & Features, December 2009




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

This article has been published in Hindu Business Line
Friends against cancer
From cheering up the waiting-room hours to funding treatment for those in need, CanKids… KidsCan is a true friend to those coming to terms with childhood cancers.
"They are doing wonderful work. They don’t get lost in formalities and are always willing to adapt to whatever help a child needs. They are a one-stop support system for the entire family.”
Benita Sen In good company: Members of CanKids... KidsCan organise fun and learning activities for parents and children while they wait to meet the doctor at cancer treatment centres
Benita Sen
It’s an unusual bookshelf. Titles include Mary Has a Brain Tumour, Tickle Tabitha’s Cancer-tankerous Mommy and What About Me? When Brothers and Sisters Get Sick. Who are these books for? On a stifling summer day, there’s a buzz under the portico of the Institute Rotary Cancer Hospital at the All India Institute of Medical Sciences, Delhi. Amongst stretchers with patients too feeble to sit up, more p atients curled up on the floor, worried relatives and dozens more awaiting their turn to meet the doctor, this corner’s bustling. A play is about to be staged! A group of volunteers — some cancer survivors and some mothers of children who have had cancer — cheer on the bright-eyed actors, all of them children diagnosed with cancer, as they enact the story of a seed germinating.
This is the work of CanKids… KidsCan, a non-profit organisation founded by Poonam Bagai, a cancer survivor, and devoted to children and their families combating cancer.
“Carpe Diem! Seize the day,” exults Poonam repeatedly, hugging and kissing the children, and proving that joy can be contagious. CanKids’ work involves facilitating the best possible treatment, helping build bridge s between medical professionals and the families, providing a happy and cheerful environment at treatment centres and sharing information, experiences and access to advances in treatment from all over the world. Gift of life
Poonam Bagai
But why only children? About six years ago, when her sons were seven and three, Poonam was diagnosed with cancer of the colon. When she went into remission, she believed she had been given the gift of life for her children. And for children who, like her, had been diagnosed with cancer. “If ever anyone can remind you that life is worth living, it is children,” says Poonam.
Unlike adults, children are often diagnosed with cancer when the disease is at a more advanced stage. For each adult diagnosed with cancer at an advanced stage, there are four children. Even as the medical fraternity and the media caution adults to cut back on lifestyle factors that cause cancer, the causes of childhood cancers are virtually unknown. Returning to India after her treatment, Poonam gave up her job with the Indian Railways and volunteered with CanSupport and Cancer Sahyog, two organisations that reach out with support for cancer patients and their families.
In January 2004, in the basement of her parents’ home, Poonam started CanKids as a unit of the Mumbai-headquartered Indian Cancer Society and a member of the International Confederation of Childhood Cancer Parents Organisations (ICCCPO).
Through the week, CanKids workers go to major cancer centres in the city including AIIMS, Rajiv Gandhi Cancer Hospital and Apollo Hospital. At AIIMS, they spread out to cover several departments dealing with cancer, including haematology and paediatric wards and the two ‘dharamshalas’.
Four teachers, three of whom are qualified and one is a cancer survivor, hold activity clinics outside these centres. One of the teachers is the parent of a child with cancer. The activity centres create bonds among parents connected by concern, and the presence of survivors gives them hope and strength. The children are kept busy and happy during the long wait for their turn. Informal schooling
As cancer and its treatment can be debilitating, leaving the patient vulnerable to infections, several children drop out of school during the treatment. Traumatised by a life-threatening disease, such children are often low on self-esteem. The activity centre helps them keep in touch with studies through informal learning, while the crafts sessions provide an outlet for their creativity. And who doesn’t love a hearty song and a snazzy poem?
“The challenge is to keep them learning, their minds active and positive and their spirits happy, to help build self-esteem and confidence,” says Poonam. Once the child is ready to return to school, CanKids is at hand to ease the process of readmission. Those who cannot afford home tutors are given financial assistance. Needy parents are given Rs 5,000 a year against bills. And wherever a return to school is not possible, CanKids… KidsCan facilitates reintegration alternatives such as vocational courses.Counselling… and celebrating
Doctors have been requested to guide needy parents to the organisation, to help ensure no child goes without treatment for want of funds. To date, CanKids has assisted over 800 children and is convinced from the “fabulous donor response” to its Adopt a Child programme in India and abroad that “we live in a giving society”. It works with the Health Ministry and the Prime Minister’s Relief Fund to facilitate governmental assistance. “Funding is vital in a country where cancer treatment is so expensive,” points out Poonam. To date, they have dispensed about Rs 1 crore towards medical assistance, including bone marrow transplants.
Wherever possible, families are counselled to enable themselves in every way and provided emotional and psychological support.
When the motto is to live life to the fullest, birthdays turn extra special. They are celebrated twice a month at Haven, the CanKids office, with gifts and cake. Diwali is the time for the Wish Cards programme where wishes expressed by the children are granted. For some of the bigger wishes, CanKids has tied up with the Make A Wish Foundation.
One of the most crucial bridges it builds is through ACT or the After Cancer Treatment programme for survivors, with the monitoring of long-term side effects. CanKids keeps in touch with the children and their families even after the hospital visits are over. Palliative care for pain relief is another important aspect of its work. And wherever the cancer wins the battle, it is again time to reach out… with bereavement counselling.
True friend in need
As a resource centre, CanKids disseminates information on cancer, prints and translates related books, and stocks many good titles in its library.
And its work has won admiration all around. Says Dr Amita Mahajan, senior consultant, paediatric oncology, Indraprasth Apollo hospital, “They are doing wonderful work. They don’t get lost in bureaucratic hassles and are always willing to adapt to whatever help a child needs. They are a one-stop support system for the entire family.”
Sheila, who lost her son three years ago to cancer and is now a volunteer, points out how CanKids has improved things. “I come here because I see my son in these children,” she says, “And also so that no child and no family go through what we did, with no idea of where to get funds for the treatment. Some families are even given medicines.” Another mother returning to Patna requests a chapter there. CanKids is ready with advice.
Worldwide about 250,000 children get cancer each year. In countries where detection is early, up to 70 per cent of the children get cured. In India, we still lose about 70 per cent of children to cancer. CanKids strives to turn those figures around, spreading awareness, helping doctors with patient and family compliance and continuation. As a recent media release from the International Society of Paediatric Oncologists and International Confederation of Childhood Cancer Parents Organisations points out, “Most childhood cancers are highly treatable, provided prompt and effective treatment is accessible.”
And every day, CanKids spreads the message of Carpe Diem. Seize the day. In fact, grab the moment!
Helping hands
A cross-section of organisations countrywide that reach out to people with cancer:
Indian Cancer Society, Delhi and Mumbai
CanSupport, Delhi
Cancer Sahyog, Delhi
Can Stop, Chennai
V Care, Mumbai
Cancer Patients Aids Association (CPAA), New Delhi and Mumbai
Sahayata Cancer Sahyog, Chandigarh
Hitaishini, Kolkata