As you know, tobacco is one of the strong risk factors which is associated with cancer. 40% of the cancers in our country are attributable to tobacco use, the single most primary factor which is associated with most of the cancers. There are tobacco-related cancers, that ranges from 40-50%.

The government, as well as the non-governmental organisations, work exclusively on cancer prevention and control strategies. One of the important areas of cancer control is tobacco control and we believe that tobacco control is cancer control. So we started working with cancer control, especially tobacco control, from the year 2002 with support from the World Health Organisation and the Ministry of Health and Welfare of the government of India. The government set up 19 tobacco cessation clinics across India, ours is one of the centres which was established in 2002. Later it was renamed as a resource centre for tobacco control.

We were doing cessation services for the patients and also general public, those who were dependant on tobacco use. Later we realised that working only on tobacco cessation and tobacco control measures, especially working on campaigns, capacity building, that’s not the result that we looked for. So we thought we should work more on the other aspects like, for example, providing alternate livelihoods for those who are working in the beedi industry which is one of the largest industries which produces tonnes of beedis in India.

There are seven million women engaged in this work, especially in my state, the state of Tamil Nadu. Seven million women are engaged in rolling beedis. They don’t realise the harmful effects of working in this industry. So it is our responsibility to help them move to alternate, healthy and sustainable livelihoods which will ensure their quality of life, a better quality of life. What we decided is initially we went and took a survey and we wanted to know whether these women are aware of the ill effects of working in this industry and then we also added a question to understand whether they are willing to shift to an alternate livelihood.

Surprisingly, although they are not very much aware about the ill effects of working in this industry, but they were willing to shift to alternative livelihoods, provided there is a sustainable model. So we took that as a chance, we experimented with many options and finally we found a successful model. I think I’m happy to share with you about the model that we have with us now.

Please discuss the model, and what international guidelines did you follow to make this happen?

You must be aware of FCTC, the Framework Convention on Tobacco Control. It’s a public health treaty which talks about various tobacco control measures. There are many articles, one of the articles which is put forward in the FCTC is article 17 and 18 which talks about providing viable alternate livelihoods for beedi workers, tobacco workers. And also shift the cultivators, the tobacco cultivators, to alternative cropping. So these are the two things it talks about.

We are working in both these areas but right now we are primarily focussing on the first one, that is providing alternate livelihoods for those who are working in the beedi industry, which is a smoking form of tobacco. That is the main objective which is line with the global agenda. Very few people, even very few governments work in this line and I’m happy to share that we are one of the pioneers in doing this work because we are in the field for more than ten years now.

So we have done a detailed survey and we experimented with many projects. One successful model that we brought out is combining providing care to the cancer patients and help these women to engage in a full-time job. That’s when we associated with Exodus. Exodus is a company which is a producer of wigs. They are a company, they manufacture wigs and they generously came forward during the time of COVID, 2020. Prior we had experimented with many… we trained these women on tailoring, we trained these women on coir-based handicrafts but the problem was marketing those products, that was a big challenge.

Then we were looking for various options which gives a sustainable outcome. This wig making is one of the excellent models, I would say, an excellent model which is working very effectively. So we already trained more than 1,000 women on tailoring and we just gave an option to those women who were trained by us that we are planning to set up this wig-making unit, would you be interested. And many said yes, we are interested. They were willing to work in this, we gave them an option with the monthly stipend of 3,000 Indian rupees. We trained them for 4-6 months and based on their skills, the skill set and their finer activity, and Exodus trained them on making wigs and then they engaged those women into wig making.

Now, these women make quality wigs, not only for cancer patients and also those wigs are sold in the market and the money that we earn from selling these wigs was given as a salary to these women. So this is the concept. So the first thing is we trained these women in wig making and the wigs made by these women are used for cancer patients, those who are losing hair because of chemotherapy. So that’s how it works.

One more thing, what is an interesting factor in the wig-making industry, getting hair is the biggest challenge. It’s very expensive, it is almost equal to gold, that’s what we realised when we started working on it. It’s very expensive. So then we just requested the general public to donate hair and we got an amazing response from youngsters. For women, even men, hair is something considered very important and it’s connected to beauty. But we got an overwhelming response from the public across the country and they started sending their hair through couriers and some of them they come in person to drop the hair to us. So we collect all this hair and we give it to Exodus and they make wigs using that hair. So that’s how it works. That’s why I said it’s a beautiful model.

What is the psychological impact on women in the beedi rolling industry and do you get patients working in this industry?

As you know, cancer and its treatment has its impact on the psychological aspects of patients and their family members. If you look at some of the impact, like the distress of body image issues, which is associated with quality of life sometimes, not directly with the treatment outcome but it has strong associations. One of the important aspects during the time of treatment is the alopecia, loss of hair. Chemotherapy has so many side effects, these are reversible side effects, I’m talking about reversible, not the irreversible ones. When you talk about reversible side effects, the hair loss is something which is very much concerning for patients, especially younger women, those who are falling between AYA or the middle-aged group. Sometimes thy even develop depression because they are finding it very difficult to face society because people around them generally ask. So many times patients would say that I will stay back here inside because I don’t want to go and face the community which I belong to because people do ask. So it has a strong impact on their quality of life.

So that’s when one of my colleagues who returned from the West said that there it’s not a problem so why not think about using and providing a wig to these patients so that they can cope well. We debated long because we were unsure whether people in India would accept wigs because a cultural implication was there. But when we started doing a survey we realised that many were aware of the wigs and they wanted to have one but they didn’t know where to go and affordability was a big question. Because they are struggling to pay their bills for their treatment and also there are a lot of out of pocket expenditures already. If you want to do this and they can’t afford to go for one. So that is when we decided to do this project. I think this was ten years ago.

There was, again, a survey conducted, we understood the preference of patients about having a wig. As I said earlier, around 70-80% of the patients said if provided free they will go for one. So that’s how we started. We also conducted a small study on whether does this help these patients improve their quality of life – it does and we found out that having a wig at the time of treatment improves quality of life, not global quality of life, especially the body image related concerns.

So, in a way, for the family and for the patients this is very, very helpful. It’s a dual purpose so one way the poor women engaged by the industry in beedi rolling are now having a life with a good quality of life. That’s one and, second, the public are donating hair and that goes for a good cause. The third, those who are diagnosed with cancer receiving chemotherapy, having the issue of alopecia, are getting a wig that improves quality of life.

All the more, of course we struggled to find a donor but still some come forward through CSR or some other institutions. They come forward and support us. Although Exodus produce wigs and those wigs need to be purchased because at the minimal cost also we need the support. So we spread this message to people around and they come forward and support us. So all this is possible because of public philanthropy, otherwise this may not be possible.

Is there anything else you would like to add?

What we do right now is only a dot in a circle because if you look at the data, I was talking only about one state in India. There are many other states where many such women, men, are engaged by the industry, the beedi industry. We need to work towards shifting them to a healthy alternative in their life to have a better quality of life, support them in improving their quality of life and their family, especially children. Sometimes the children are also engaged in this work because it’s home-based work, the entire family is involved without realisation and it is continued like a family job. Many times even the rich women in the village also are getting cases because they don’t realise that this is harmful. So, when we do an awareness, when we tell them that this is harmful to themselves and also affects the other person, the majority say no, I don’t want to continue.

So we must focus on creating awareness, number one. Number two, many developing nations, especially LMICs, this is a big challenge, especially Asian countries. The smoking form of tobacco, especially beedi and similarly the smokeless form of tobacco is a big challenge because the cancer associated with these cancers are huge in number. To eradicate, one strategy that we should adopt, I would say universally, is to shift these industry workers to an alternate. Second, we should work on the tobacco cultivators, educate them, create awareness and motivate them to move to alternative crops, that is crop diversification.