The Project focuses on three aspects: awareness, advocacy and patient support. We aim to create awareness about the disease amongst the general population, patients, parents and physicians. We also aim to advocate a standardized protocol for diagnosis and treatment for patients suffering from the disease. And, finally, provide support to families of children suffering from Hodgkin’s Lymphoma in the form of financial, medical and psychosocial assistance.
For patients enrolled in the InPOG-HL Study, we are committed to supporting:
The CanKids BMT Project aims to make a difference in BMT in India through its ‘Awareness, Advocacy & Patient Support Program For Pediatric Stem Cell Transplant Support In India’.
Vision 2020 - Dr Santosh Honavar of CFS Hyderabad has created the Vision 2020 Document which outlines a clear proposal on how we can make IMPACT on RB in the next 5 years – both to save LIVES and save VISION. It outlines a clear path, timelines and a plan of action.
CanKids undertakes to provide/arrange funding for
Patient registered at the Paediatric Oncology/Other Department
Our first interaction with the family through our Social Support Team aims to build a bond, hear the story and assess family need. For every child who requires assistance from Cankids, a Patient Information Sheet (PIS) is completed with the help of a psychologist. A key reason for filling the form is to convey the central message to families that “YOU ARE NOT ALONE”.
On the basis of the PIS, an MSF is completed by the Medical Program Officer or Unit Coordinator. Details of treatment, assistance sought and funds spent already or available to the family are obtained.
Emergency Medical Assistance (prior to processing the case) – provided in the CSU budget. It is Rs 5000/- for units out of Delhi and Rs 10,000/- for IRCH, AIIMS and SJH.
Poor patient support assistance (PPSA) can be provided to family looking at the situation and income of the family. This helps provide support for travel, stay and food for those who cannot afford it. Amount can be sanctioned upto INR 3000 per patient, post which the case can be brought to the medical committee for further support.
The next step is to get recommendations from the treating doctor – clarifications on prognosis, treatment plan and level of assistance recommended for each new case enrolled.
Cankids Medical Committee (MCM) for final decisions as to what support will be provided
In our Delhi head office, medical committee meetings are held weekly. Here the committee decides, on the basis of expenditure likely/done on each child, which child is eligible for the Adopt a Child Program or general Medical Assistance Fund
A maximum of INR 30,000 will be provided under Medical Assistance Fund. Donors contribute a fixed amount to this fund and a variable number of children are supported through this fund
Any amount sanctioned above INR 30,000 are added to the CanKids adopt a child program. Through this program donors are encouraged to fund individual treatment of children
All pediatric palliative care cases will be supported up to the limit of INR 10,000. Children can also receive palliative care at our center in New Delhi
Follow up with families on monthly basis.
PIS & MSF
Cancer Hospitals where CanKids does not have a formal agreement with Hospitals & Doctors they contact us through Internet / Email / Phone /Social Media. Doctors write to the medical program representative with a case summary to firstname.lastname@example.org OR email@example.com. The case is brought to the Medical Committee who takes the decision
PIS and MSF form is sent to treating doctor to fill out
Medical team takes the case to the National Medical Committee after clarification received from the doctor about amount of support required. Medical Committee asks any queries that may pertain to the case. Medical team gets back to the National committee with response from the doctor and if required the case is also sent to specific committees for approval like BMT, RB. The National committee then either sanctions the funds/medicines or declines to support the case on the basis of their assessment
Medical team follows up the case on a weekly basis
In those instances where Cankids has an MOU with a treating center for a special project and is giving direct grants to the Center, transfer will be through Demand Drafts in the Name of Unit Accounts or hospital account along with a letter which contains information and details on the usage of the DD
The letter containing above information will be sent to CanKids representative at the Unit and he/she will proceed for further action. In such instances where the funds are being provided for Medical Support, the Hospital would need to provide details of the Utilization of Funds. Patient wise utilization certificate will be obtained from the hospital concerned to the unit every three months OR on full utilization of funds OR on non-utilization of funds in the event of expiry of the patient or if treatment is discontinued, whichever is earliest. If balance funds are available these do not have to be sent back to Head Office but will be adjusted against future Medical Support support being made by Cankids. No balance funds may be utilized without sanction from Cankids Head Office. Further funds for any patient will not be transferred till such time as Utilization Certificates are made available for previous funds sanctioned.
In view, of the high cure rates we would try our best to support them in every possible way.
MRD test can be approved for B Cell ALL patient after approval from Medical Committee and will be only supported in two approved vendors, one in Delhi and one in Mumbai. Samples can be transported as and when required.
It is envisaged that only centres equipped with supportive care services required for AML treatment will embark on treatment.
It is expected that all patients will receive neo-adjuvant chemotherapy. However it is paramount that the timing and modality for local treatment is planned at the time of diagnosis and initiation of therapy.
Sanction for requests will require the following information:
Plan for local treatment:
Request for support for prosthesis for limb salvage will be considered on a case to case basis. If approved, partial funding may be sanctioned for Adler prosthetic implants.
As of now, we are unable to support Autologous SCT’s for Ewings/ PNET/RMS
All these patients are expected to require multidisciplinary treatment. The following information would be required:
Venous access devices
For patients being treated at centers that do not have facilities for RT, help for this may be arranged at another center through Cankids.
We only consider patients who relapse at least six months after completion of therapy for treatment support.
In view of the extremely guarded prognosis of patients who relapse whilst on treatment, we can support them only in a limited way
We only support early relapse as a palliative case with up to INR 10,000
We would not be able to support for maintenance therapy for AML and would actively discourage this as current evidence does not support this practice
As of now, we are unable to support autologous transplants for these indications