Monthly Report, June 2001

Main Stories

3^rd Global Conference for Cancer Organisations

Department Reports

Prevention and Early Detection

Insurance

At Smt. Panadevi Dalmia Cancer Management Centre
At Tata Memorial Hospital
"Can I Help You?" CPAA’s Desk at Tata Memorial Hospital’s Private OPD
At Bai Jerbai Wadia Hospital for Children
Palliative Care Unit at Tata Memorial Hospital
Counseling at Cama & Albless Hospital Cancer Ward
Nair Hospital (Radiation Department)

Rehabilitation

3^rd Global Conference for Cancer Organisations
A Report on the Meeting held between 24-27^th June at Brighton, UK
"Facing the Challenge Together"

Cancer has become a universal problem that affects people, rich or poor, in all countries. To conquer this disease, it has become essential to share the knowledge and findings gleaned by workers the world over. Recognising this, many people are already pooling their experiences to their mutual benefit in an informal manner. Journals publish the latest research findings. However, a need has been felt for an opportunity to meet and interact, in order to encourage further cooperation. The global conferences for cancer organizations provide an important occasion to broaden and strengthen collaborative efforts among like-minded associations, government aided institutions, hospitals and non-governmental societies like Cancer Patients Aid Association.

Ms. Alka Kapadia, Executive Director, CPAA attended the conference, which was jointly hosted by The Cancer Research Campaign, Imperial Cancer Research Fund and the International Union Against Cancer. As CPAA’s representative at the conference, she presented a paper entitled "Total Management of Cancer-Awareness to Treatment" and a poster "Effective Fundraising Techniques Aiming Towards Self Sufficiency for Non Funded Cancer Organisations" both of which were well received.

The Opening Ceremony, held on the 24^th, consisted of three talks by distinguished speakers from UK, France and India. Sir Richard Peto spoke on tobacco addiction; Mr. Michel Frost spoke on collaborative activities among French speaking countries and Dr. Ketayun Dinshaw, Director of Tata Memorial Hospital spoke about the challenge of controlling cancer in a developing country.

The main programme extended over three days with a plenary session of three talks each, every morning. The topics on the three days were "Prevention and Early Detection", "Delivering Results and Supporting Patients" and "Running a Cancer Society". The plenary sessions were followed by six simultaneous symposia of three to five talks and discussions. The subjects ranged from "Tobacco Control" to "Psychosocial Support for Patients" and touched on various aspects of fundraising, the role of cancer societies and providing information about cancer.

The afternoons were devoted to two sets of workshops. As many as seven workshops were held in each set. A facilitator, an expert on the subject, who guided the discussions so that participants could share their experiences while learning, led the workshops. "Diet and Cancer", "Communication Skills Training for Doctors", "Ethics and Cancer Genetics" were some of the interesting topics of debate.

Post tea, seven simultaneous sessions of "free papers" were held. The sessions focused on "Communication and Cancer Control", "Research and Cost Effective Practice", "Using Media", "Training Volunteers" besides the topics already mentioned. 73 posters were on view at the conference.

Ms. Kapadia’s talk explained CPAA’s concept of "Total Management of Cancer". There are 6,00,000 new cancer cases reported in India every year. The most common cancers are Head and Neck in males and Cervical and Breast Cancer in females. All three of these cancers can be cured if they are detected early. Screening is therefore vital. Healthy individuals avoid screening due to the paucity of information, fear, social stigma and lack of medical cover. CPAA’s programme of "Total Management" addresses the unique Indian condition by covering the entire spectrum of cancer related information from raising awareness, early detection and treatment with emphasis on emotional support and guidance. A part of the programme is the Cancer Insurance Policy (CIP), which creates awareness, promotes prevention, facilitates regular check-ups and supports treatment financially and through counseling and guidance. The numbers highlight the effectiveness of the implementation of the principle of "Total Management". 50,000 people have attended awareness lectures, 7,000 underwent regular annual check-ups, 19 asymptomatic persons were detected with cancer in the CIP’s preliminary check-up, 25 persons were detected to have cancer during their annual screening. The total funds disbursed are in the range of Rs. 19 lakhs. The CIP has proved to be an effective and comprehensive programme in a country where medical covers and insurance are a luxury.

Her poster was entitled "Effective Fundraising Techniques Aiming Towards Self Sufficiency for Non Funded Cancer Organisations." The survival and effective functioning of any non-funded, registered, charitable, non-Governmental organisation (NGO) largely depends on continuous flow of funds and on newer fundraising strategies focusing on changing times. Fundraising caters to patient needs as well meeting as infrastructure and administrative costs. It is necessary to continuously develop novel long-term fund raising techniques and work towards the self-sufficiency of the organisation to ensure longevity and sustenance of the activities. In CPAA this has been achieved by compartmentalization of various activities into different departments. Diagnostic facilities have been commercialized while offering them free to cancer patients and at subsidised rates to the financially backward. Corporate tie-ups, auctions, promotional programmes are some of the recent efforts. Large volume, low cost schemes like direct deductions from salaries, mailer inserts with bank and credit card statements have been used. Internet marketing is the latest technique. It has to be emphasized that all fundraising must be backed by performances by the NGO, transparency, high credibility levels and a media savvy profile.

The conference was successful in meeting its aim of fostering networking and cooperation between like-minded organisations the world over. The guiding dictum of "Facing the Challenge Together" was very much in evidence.

Department Reports

World no Tobacco Day was observed in May and June through the organisation of 14 camps from 23^rd May to 11^th June. A total of 2564 people were screened, 2359 males and 205 females. As many as 1253 or 48.87% required follow up. There were 81 cases of submucosal fibrosis, 410 cases of leucoplakia, erythroplakia and melanoplakia. 64 persons were referred to Tata Memorial Hospital’s Preventive Oncology Department for biopsies. There were 698 cases of tobacco abusers who will be called for follow up every year to assess whether their addiction has caused further damage.

Mr. Pramod Nawalkar, who is well known for his drive to clean Mumbai beaches, inaugurated the camp at Hutatma Chowk. Mr. Ashok Mehta, Sheriff of Mumbai was also present. Both Mr. Nawalkar and Mr. Mehta reiterated their firm resolve to bring about legislation banning smoking in public places in Mumbai. In this regard, a scheme is envisaged to honour establishments who join the movement by declaring their premises "No Smoking" zones with certificates. CPAA will be coordinating these efforts along with the relevant government bodies. Mr Nawalkar also gave out artificial voice boxes to patients who had lost their larynx to cancer. Many thanks to Ms. Shilpa Shah for the sponsorship of these prostheses.

34 camps and OPDs were held during the month of June. Out of the 22 camps held, 4 were organised at BARC, Deonar, the Income Tax Office and for Lions Club of Matunga; 2 each for Aga Khan Jamatkhana at Andheri, Bandra, Jogeshwari and Versova and for Lions Club of Kanjur Marg.

A total of 995 people, 297 males and 698 females were screened in the camps and clinics. 247 people were advised follow up. 12 OPDs and clinics were held during the month. 103 males and 146 females were screened. 64 people were advised follow up.

Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre

The Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre screened 184 persons during June. 387 tests were performed, out of which 329 were pathology tests. 16 sonography, 29 x-ray and 13 mammography investigations were carried out.

Insurance

45 new policies were registered in June, bringing the total to 6855. 134 people were examined, of whom 38 had come for the first check-up and 96 for renewal check up.

The Insurance department received a touching letter of appreciation from the daughter of one of our policyholders, Mr. K.M. Shetty. Shilpa wrote to say how useful the policy had proved to be for her father. Her father had taken the policy when employed by SICOM. When he retired he decided to continue the policy, a decision that turned out to be a wise one. Mr. Shetty suffered from a brain tumour and expired on March 26^th. Shilpa was all praise for Anita Peter of CPAA’s Cancer Insurance Policy whom she found especially cooperative. The entire department was supportive during difficult and sad moments. However, they found everyone ready to help with lodging and receipt of claim money. "I would once again, on behalf of my family, like to thank Anita and CPAA from the bottom of my heart for the great help that they have been to us and genuinely hope and pray that they continue with the good work." All of us at CPAA share in the family’s sorrow and pray that they find the strength to bear the grievous loss of a loved one.

Patient Care

At Smt. Panadevi Dalmia Cancer Management Centre

A total of 617 patients were aided, counseled and given guidance at our locations in Mumbai-Srimati Panadevi Dalmia Cancer Management Centre, at Nair Radiation Centre, Cama & Albless, Wadia and Tata Memorial Hospitals and the Palliative Care Unit at TMH. 104 patients availed of ambulance facilities, including 12 patients who availed of the stretcher service for long distance. 100 persons were given clothes, 40 packets of biscuits and 75 boxes of Complan were distributed. 13 home and institutional visits were made. 3 of our patients expired during the month. Donations amounting to Rs. 39,500 were collected and Rs. 2,65,909 were disbursed.

Not included in the donations that were collected are two cheques for Rs. 30,000 from Asian Paints India Limited meant for the tuition fees of a young man who contacted CPAA over the phone one afternoon. The 24-year-old from Delhi said that he had suffered from bone cancer three years ago. After several operations and implant of prostheses, which would keep breaking, his leg was amputated last year. Through all his trials, he had continued to study hard and had managed to secure admission to IIM, Ahmedabad. His father had spent all he could for his son’s treatment and could not afford to pay the fees. The admission to India’s premier business school was such an immense achievement that we at CPAA were moved to try to raise the necessary funds. His cheerful demeanour also motivated us to do our utmost on his behalf. At this juncture Mr. Ashwin Choksi, Chairman of Asian Paints stepped in and played the part of his guardian angel by donating the required amount. The cheque was depatched and we expected to hear from an enthusiastic new student. But this was not to be. In an ironical turn of events, in his final check-up before departure for Ahmedabad, his doctor detected metastasis to his lungs and advised him to take chemotherapy and conserve his energy. We hope that he will be able to join classes at a later stage once his treatment is complete and thank Asian Paints for their generous and spontaneous donation.

At Tata Memorial Hospital

433 patients were aided, guided and counseled by CPAA’s Halima Aurangabadkar at Tata Memorial Hospital during June. 280 packets of biscuits were distributed. 45 patients were given clothes, 5 kgs of sweets were distributed. 8 referred cases were helped. 22 ward visits and 4 home visits were made. 5 patients were given medicines and toys were distributed to 15 children. 108 patients were given Complan and Horlicks. 226 patients utilized the ambulance facility including 54 for long distance travel.

"Can I Help You?" CPAA’s Desk at Tata Memorial Hospital’s Private OPD

This month, Jennifer Quadros helped 733 patients, providing literature on various kinds of cancers to 197 patients and their family members, helping 153 in filling up registration and other forms and answering questions about the hospital for 269. 16 ward visits were made.

Jennie proved to be a guardian angel to Anita Gaud, a 26-year-old girl. Anita was operated on in 1991 at KEM Hospital for a brain tumour. Her mother expired soon after. 11 years after this traumatic experience, the disease has now recurred. This time she was treated at Tata Memorial Hospital by Dr. Sultan Pradhan. The operation took almost 11 hours. Anita has two married sisters and a brother who is presently out of work. She was to have been married a few months back, but the match fell through when her disease recurred. Anita’s father, who worked as a clerk, has begged and borrowed for his daughter’s treatment so far. He is now unable to meet the expenses for her medicines. At this stage the family appealed to Jennie who stepped in and arranged for reimbursement of Anita’s medical bills.

At Bai Jerbai Wadia Hospital for Children

23 new patients were registered during the month. 812 patients attended follow up of whom 130 patients are undergoing chemotherapy. 40 patients were counseled and given guidance and 5 patients were visited in their wards. 5 group meetings regarding cleanliness and diet were organised and 35 children were given sweets, toys, biscuits and Complan.

Palliative Care Unit at Tata Memorial Hospital

30 patients, 18 males and 12 females were counseled during the month of June. There were 14 cases of Head and Neck cancers, 6 cases of cancer of the abdomen, 3 cases of cervical cancer, and 8 other cases of cancer. 2 cases were below the age of 20.

Mrinal Marathe, herself the mother of a boy and a girl, counseled the mother of an 11-year-old with osteosarcoma. Being a girl child, her entire family neglected her. Without any support, the mother is struggling to take care of her only daughter who has been declared terminally ill. Her feelings of guilt are centred on the knowledge that if it had been a boy, heaven and earth would have been moved for the child’s treatment.

Counseling at Cama & Albless Hospital Cancer Ward

20 patients were counseled and given guidance. Among these are 5 new patients. 2 patients were registered with CPAA. 8 patients were visited in the wards. 3 terminally ill patient were referred to Shanti Avedana Ashram. Rs. 6731 was provided towards medicines. 9 patients were referred for investigations at concessional rates. 12 patients were given guidance regarding alternative medicine. 8 patients availed of the ambulance service.

Nair Hospital (Radiation Department)

26 patients were counseled and given guidance at CPAA’s Counseling Cell at Nair Hospital Radiation Department. 4 patient visits were made. 3 terminally ill patients were referred to Shanti Avedana Ashram. 6 patients were given guidance regarding prosthesis 11 patients were given information about alternative forms of medicines, 20 were told about diet and 15 about cleanliness and hygiene. Rs. 3,000 was donated towards radiation treatment and Rs. 13,753 towards medicines. 50 packets of biscuits were distributed.

Rehabilitation

The Rehabilitation Centre adopted eight new patients this month. A total of 86 patients were helped. 2 cases of mastectomy were attended and breast prostheses were provided. 220 patients were given rations worth Rs. 27,474. Rs. 18,720 was spent on teachers’ salaries, for patient education and vocational training. Rs. 1,15,570 was spent on patients’ wages and Rs. 30,336 was spent on welfare activities, conveyance and diet supplements.

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