The Hindu Business Line : Rallying around

When Ranjit Kaur was diagnosed with breast cancer about eight years ago, she felt as if her whole life was falling apart. Fears and questions crowded into her head... "I didn't know whether I was going to get alright, whether I was going to die the next day, next week, next month, or next year," she recalls.

The word `cancer' sounded "extremely frightening" to her. "I didn't know why I got the disease; I hadn't done anything out of the way. I had led a very healthy life, then why did I get the disease? There were too many questions in my mind..."

But fortunately for her, help was at hand in the form of another survivor of breast cancer for 19 years. When Ranjit saw her, she was amazed at the way she looked. The woman's assuring words — `You will look better than I do today' — and her very presence calmed Ranjit down and gave her the strength to go through the treatment.

"You can't get from anyone else the kind of camaraderie and bonding that is formed with someone who has been through the same experience," says Ranjit, now the President of Reach to Recovery International, Breast Cancer Support Network, Malaysia. She was in Chennai recently for a workshop conducted by the American Cancer Society.

Reach to Recovery was initiated in the US by Teresa Lasser, who was diagnosed with breast cancer.

The programme's philosophy is simple: A woman who has been treated for breast cancer offers time and support to another undergoing the treatment.

Apart from emotional support for patients and their family, the network offers rehabilitative support — for example, it finds out where a patient can find prosthesis services for breast replacement. In many countries, where silicon prosthesis are expensive, the group sources cheaper prosthesis made of foam.

The support group aims to be a source of strength to patients and assure them that they are not alone in the battle.

Advocacy and awareness

Another big role that cancer survivors have taken on is that of advocacy. Says Shalini Vallabhan, Director, Asia Cancer Control Strategies, American Cancer Society (ACS), which convened the workshop in Chennai: "Cancer survivors are the strongest and most critical advocates. Because of their experience, they and their families can quickly state what the needs are, what can be done and they are keen to share their experience."The 90-year-old ACS has trained over 200 cancer leaders in more than 60 countries. It also runs a 24x7 call centre and Web site helpline.

The society has a strong volunteer network, nearly 2 million, in the US, which plays a vital role in pressing for legislation and governmental action.

"When we want a Bill supported, we need to change the minds of policy-makers, and get our volunteers to contact them through telephone, e-mail or fax. We recently passed a Bill called `The Patient Navigator' that helps a cancer patient literally navigate the system. We worked on the Bill for three years; it just got signed," she says with pride.

The group's endeavour is to "empower advocates and leaders on the ground — to act as convenor and catalyse groups. We hope that people bring a passion to this fight," she adds.

Cancer in India

ACS has identified India as one of the three countries with a growing cancer incidence, China and Mexico being the other two.

"Here tobacco-related cancers account for 50 per cent of all cancers in men, 20 per cent in women. The most common cancers in women are cervical and breast. Alarming is the fact that 70-75 per cent of cancers are found at a late stage, which means they are incurable. Also, access to medication is sorely lacking. These issues need to be addressed immediately," says Shalini.

The problem of tobacco in India is unique, as unlike the West which has to tackle cigarette alone, India is home to branded cigarettes and unbranded products such as beedis, charas, chuttas, kheni, ghutka, pan masala and lal dant manjan.

Says Monica Arora, Director of Hriday (Health Related Information Dissemination Amongst Youth), a Delhi-based NGO, "When we talk about tobacco control, we are not only talking of the regulated sector but also the unregulated sector which has to be brought under the tax regime."

According to the Ministry of Health and Family Welfare, there are 8-9 lakh tobacco-related deaths every year. "The revenue that the government gets is much less than what is being spent. And will tobacco control render people jobless? No. Because the government is thinking of alternative crops or employment," says Monica.

Hriday takes awareness to schools and colleges. (According to the Global Youth Tobacco Survey 2000-04, 17.5 per cent of students are tobacco users.) "But if you tell the youth that tobacco is bad for health, they say: we don't want to hear it. So, you have to involve them in the whole tobacco control effort so that they feel it's their programme. We empower them with advocacy skills so that they go up to even the prime minister and ask for tobacco control policies," says Monica.

She adds that the tobacco industry is targeting youth and women in developing countries, as it is losing customers in the developed world thanks to strict policies against smoking and an increasing number of people quitting tobacco as a result.

"When students become aware of these facts, they get charged up. They feel outraged that they are being targeted. In fact, the current Indian tobacco control act (which bans tobacco advertising and smoking in public places) that got passed is due to the demands raised by NGOs and the youth," says Monica.

Hriday is roping in students to help enforce the ban on smoking in public places. "In Delhi, school and college students have gone to restaurants to sensitise the owners."

It is also campaigning to make schools smoke-free. "No visitor can use tobacco; employees, students or teachers cannot use tobacco in the campus. Students frame rules. Violations are announced in the school assembly. The parents and school management are also involved. This effort is picking up fast," says Monica.

Hriday plans to spread its campaign to other schools at the national level. It also wants a concerted fight against tobacco use.

Besides the Health Ministry, the Agriculture Ministry and I&B Ministry must also be involved in a comprehensive effort, she says.

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