Tuesday, October 13, 2015

          Aadhar kyon????

Ever since Aadhar started, I have met so many people with my bhiksha patra (begging bowl) in hand. I have got various responses. Lots of people have wholeheartedly supported us. Not only with funds, but also with advice, volunteering and with tremendous faith that I am honest in all my dealings with their hard earned money.
Why  I started  this cancer fund is what I am asked lots of times. So I sat down to think about what really deep down motivated me to do this work. To tell you the truth, when I was diagnosed with lymphoma it devastated the people around me so much that I did not have the time to sit and mope around for myself. Just looking at them was bad enough. But later as the treatment started, I went through a lot of feelings of guilt and sadness because I felt I was the reason for all of this stress, uncertainty and anxiety. At the same time there was a deep thankfulness in my heart that whatever happened had happened to me and not to my children or my husband or my brothers. As the treatment started, the visits to the hospital were like a mini nightmare. We had to stand at least an hour or so in the line to see the oncologist. This was after we already had an appointment and the oncologist was kind enough to see us asap  as we were both doctors. It was a learning experience especially for Avinash. In his clinic patients had to wait to see him. And here he was waiting to see what the doctor had to say. But watching him being rudely spoken to or ignored by staff in the government hospital was one of my worst experiences. I used to feel terrible that because of me he had to go through all this nonsense. Then the bills started. I have to say that the cancer did not cause a single symptom. No pain, no fever, nothing. Only a painless lump. I used to take my chemo cycles in our own nursing home with caring and concerned people hovering around me. Even then I had a lot of stress and anxiety before each cycle. After the first 6 cycles I took interferon injections daily for one year. Each injection was Rs.1500/- at that time. Cost of almost Rs 40,000/- a month. I used to feel terrible. I was working only as much as could manage. But each month this money was being spent on my treatment. And this was only the cost of the medicine. No one said anything to me. My every wish was fulfilled immediately. But I used to feel a deep sense of guilt at the trouble I as causing.
I used to think all the time about all the people who I saw in the OPD. They were all mainly middle class and poor patients.  They were pushed around and had to wait for hours for their turn. If the time finished, they would just have to come back for the next OPD 2-3 days later. Then they would be handed the prescription and told to buy medicines from outside as they were not available in the hospital. Where would a person buy medicines worth thousands, if his or her salary was only 4000/- to 5000/-? This was not the only claim on his /her salary. What about food, house rent, school fees of the children? We were well off. Still 40,000/- a month was a job. How would a young parent or a villager who had come from outside Delhi or a salaried or retired person manage?? In such a situation how guilty and stressed would a patient feel, is what I always used to think!   I met a woman with stage 4 cancer in the hospital, who did not come earlier because she had no money for treatment. The wonder of it was that this lady who I thought was going to die in a few weeks, survived for 5 years when we raised money for her treatment. Then there was a 20 year old boy whose father had retired. He could see that they would not be able to afford the treatment. But his father was running from pillar to post trying to collect money. The poor child walked up to the roof and jumped off. Imagine his sense of despair and guilt. I used to feel terrible when I saw all this. Imagine if I felt guilty when everything was easy and available, what would a less fortunate person feel?
There were a lot of emotional support groups working there. They were doing a very good, kind and sympathetic job. And emotional support is extremely important. But…. What is the point of telling a person dying of thirst or starvation that all will become well with time. Would it not be better to give that person a little water or food instead?
I had joined an emotional support group for some time. We used to visit hospitals and see cancer patients and talk to them. It was excellent in its own place. But for me it was a little frustrating. I decided to start whatever I could do with whatever amount I got or could put in. Many of our well to do patients wanted to sponsor a poor person’s treatment. So that’s how I started. One patient at a time.  My close friends were my greatest supporters. Six of us - three doctors, two lawyers and a chartered accountant started this venture. Since then slowly and steadily we have been collecting money in small and large amounts and helping patients go through their treatment by providing support in the form of medicines and counseling. Aadhar started with Rs.3000/- (Rs.1000/- from each couple as first donation).The target group we chose was children. Hence the Child Cancers Fund.
But over the years we have raised more than Rs 1 Crore 25 lakhs for the aid of patients with cancer. All this money has come from individual donations. We have had no major government or corporate donors.
And that is why….!


This is one inspirational story I really like. Its from Teaching your children about God By Henry Holt.

There is a marvellous story of a man who once stood before God, his heart breaking from the pain and injustice in the world.
"Dear God", he cried out, "look at all the suffering, the anguish and the distress in the world. Why don't you send help?"
God responded," I did send help. I sent you".
When we tell our children that story, we must tell them that each one of them was sent to help repair the broken world -- and that it is not the task of an instant,or of a year but of a lifetime!!

All too often we stand by the side, shake our heads and move on. We all feel -- what can I do??And then we wait for someone else to do something.
Surely you can do something! Maybe just smile and say a few soothing words. It makes more difference than you can imagine.
Believe me. Its my experience. No one can take the pain or discomfort away. But kindness and compassion can certainly make it more tolerable. 

Monday, June 29, 2015

AADHAR ANNUAL REPORT YEAR: April 2014 - March 2015

About us
Aadhar is a registered charitable trust set up in 1998 in an effort to help the poor and underprivileged cancer patients get adequate medical care and treatment.
There are four main activities of the trust.
1.         Child Cancer Fund
2.         Fund for young women with cancer.
3.         Counselling Centre for cancer patients and care-givers.
Cancer is a disease that takes a huge financial and emotional toll on the patient and the family. Due to the substantial costs of the medication to treat the disease, poor patients are often unable to finish their treatment, even when treated in government hospitals as medicines may sometimes have to be purchased from other sources. At times this may mean that the family needs to sell their meagre possessions in order to continue the treatment which further worsens their financial conditions. If the patient cannot get the required funds to purchase the medicine, the patient eventually dies due to the lack of treatment. This loss is further compounded if the life lost is that of a child. Aadhar attempts to identify and assist such poor families, especially if the patient is a child. With increasing improvements in the management of childhood cancers, a complete and comprehensive treatment has a high chance of being successful, allowing the child to grow up to lead a healthy life.
Aadhar often receives requests for support from adult cancer patients as well. However, due to limited funds, this support cannot be provided. This has inspired the creation of a Fund for Young Women with Cancer, which aims to provide support to young women with cancer between the ages of 21-40. Young women are the spine of a typical Indian family, and the women in this age group have the huge responsibility of raising their children and maintaining the family. Being diagnosed with cancer has crushing repercussions, not only for the patient, but also for the family. Unfortunately, societal set up in rural India often neglects the treatment needs of young women, and they often drop out of treatment as the family refuses to pay for the costs of the complete treatment. This fund has been set up to help young women cancer patients to complete their treatment and lead productive lives.

Summary of our activities from April 2014 to March 2015.
The Child Cancer Fund:
1.      Number of new patients registered:   39

2.      Total of 245 chemotherapy cycles administered for old and new patients.

3.      Amount spent on treatment cycles was Rs. 17, 54,338/-.

This year for the first time we are supporting a child who is being treated outside Delhi, at Yashoda Hospital Hyderabad, in her treatment by radiotherapy. From the inception up to March 2015 we have raised more than 1 Crore and 26 lakhs in our effort to help children with cancer.                                                       
Children on support came from the following hospitals:
  1. Lok Nayak Jai Prakash Narain Hospital
  2. Guru Teg Bahadur Hospital
  3. Sir Ganga Ram Hospital       
  4. Shroff Charitable Eye Hospital
  5. Rajiv Gandhi Cancer Institute and Research Centre
  6. Dharamshila Cancer Hospital
  7. All India Institute of Medical Sciences
  8. Yashoda Hospital Hyderabad

Blood and blood products are a repeated requirement especially in the treatment of leukaemias. Parents find it very difficult to get a donor each time. To help them in time of crisis we are putting together a list of volunteers who would be ready to donate blood for a patient. Volunteers of Youth against Cancer especially are keen to help these children.

Fund for young women with cancer:
The Fund for Young Women with Cancer was established in October, 2012. Till date, twelve women have been helped through this fund. The amount spent on the treatment of young women with cancer by radiation and chemotherapy is approximately Rs 1, 70,000/-.
In the coming year, we hope to increase the number of patients that we can help through this fund. Currently, only selected few practitioners have been informed about the fund's availability. An efficient method of management for patients to request assistance needs to be set up, to better handle patient enrolment and fund dispersal. Once the availability is made known, doctors send patients of all ages for help and it becomes difficult to refuse. The other factor for limited participation was increase in the burden on the child cancer fund due to increase in the number of patients undergoing the treatment. The kind support and donations from our well wishers helped a lot.

Counselling Centre for cancer patients and care- givers:

The counselling centre has been started in October, 2012. The aims of the centre are to:
•     Decrease patient’s sense of alienation by introducing them to others in similar situations, especially survivors who survived the disease, and are doing well.
•     Reduce anxiety about the treatments,
•     Assist in clarifying misconceptions and misinformation and
•     Lessen the patients’ feelings of isolation, helplessness and neglect by others.
As a Counselling centre, we aim to provide patients and their care givers with a more comprehensive support system, enabling the patients and their families to be better prepared to deal with the cancer and its fall out in every way possible. A very holistic approach is being planned where we are involving homeopathic and ayurveda specialists also in our approach.
. In addition to the above points, the Centre also
•     Informs and educates patients and relatives about the disease, its treatment and other relevant information such as common side effects etc. 
•     Answers queries patients may have about the disease and about positive health practices such as diet, exercise, etc.
•     Teaches stress management through relaxation techniques, meditation and yoga.
•     Provides advice on nutrition from a dietician about what to eat, what to avoid, how to prepare healthy and wholesome recipes.
•     Assists with general information such as how to get wigs and other prosthesis, details of genuine dealers who supply, on sale or hire, wheel chairs, crutches, walkers and other things required for these patients etc.
The Counselling centre is being run with the help of highly trained professionals such as    Dr. Aradhana Sharma, a highly qualified psychologist, who also works in various schools as an advisor. Dr Sanjiv Kumar has agreed to be our advisor on ayurveda.
As part of our pro-active outreach program, our plan is to organize awareness drives in various schools. This will be a part of our campaign to spread awareness about cancer, especially regarding substance abuse (such as smoking) and environmental factors causing increased incidence of cancer. Another purpose is to create sensitivity about problems of patients suffering from cancer
Distribution of free literature:
The following booklets and pamphlets were printed for free distribution to increase awareness about cancer and treatment options available:–
  • Cancers found in Indian Children.
  • Booklet on Cancers of the respiratory and gastro-intestinal tract.
  • Cancer –Ek Ghar Ki Kahani which is a drama script on the three commonest gynaecological cancers.
  • Booklet on cancers caused by HIV virus by Dr Manoj Sharma. This specially addresses young potential parents who may be responsible for the birth of HIV positive children who are at higher risk for certain cancers. Besides this, children with HIV positive parents may be orphaned at an early age and face many problems.
  • Cancer Chikitsa- Isse Saharsh Kaise Poora Karein.                                                                       
  • Hindustani Auraton Mein Cancer-Cancer Ki KAhani, Jo Auraton Ne Na Jaani.                          
Cancer Chikitsa, Gahan Chikitsa

Contributions:   Contributions were received by way of:-
1.      Cash;
2.      Cheques;
  1. Drafts;
  2. Direct remittance to the account.

Note: Aadhar has received FCRA approval for accepting donations from abroad and all donations made to Aadhar are eligible for benefits u/s 80G of the Income Tax Act, 1961.
We wish to acknowledge the support we received from the art exhibition called Hues of Expression organized by Mrs Alka Bhrushandi, Mr Vinay Joshi and Mr Sanjay. They have donated 20% of their proceeds to Aadhar. We also received a sponsorship from Bharat Petroleum of Rs 50,000/-.
We accept with thanks monthly donation of Rs 20,000/- from Disha Womens Association and a donation of Rs 1,80000/- from Km LA Meera Memorial Trust to be used for treatment of children with cancer in the coming year.
We at Aadhar, are committed to providing child and young women cancer patients with the means of completing their treatment and provide the emotional support the family needs to battle this disease. Thank you for all your help and support during the past year. Your continued support inspires us to improve our efforts each year and to expand the access to the fund to as many patients as possible.
"I am only one, but still I am one,
I cannot do everything, but still I can do something,
I will not refuse to do the something I can do."
- Edward Everett Hale