The following are the highlights of the activities at the Thalassemia Prevention, Management and Cure Program of Sankalp India Foundation for the month of August.
Rakta Kranti - the news from the blood donation drives
After the busy summer months of organising a huge number of camps, Sankalp slowed down the pace in August. During the month of August, plenty of organisations plan for blood donation drives due to Independence Day. Degree colleges would also have started classes and many of them plan for drives. Sankalp just ensured to fill the open gaps and therefore organised as little as 7 blood donation drives leading to a collection of about 388 units of blood. However, what was quite alarming was the increased rate of adverse events in this month. Despite the fact that most of them were small blood donation drives, there were a total of 18 events, meaning a high rate of 4.64% of donors having a post donation complication. This sets the tone for further investigation and improvement in certain strategies of donor management.
Education First organised their second drive on the 1st of August. A company with just about 300 people managed to contribute 62 units of blood to the city. This is a company where less than 30 units were collected in past 2 camps. This time it swelled to more than 60+ only because of the hard work of the volunteers there. They use mailers, put posters, distributed brochures in lunch time and most importantly, they went to each person in the company and informed them about camp. Kudos to the entire team.
Fiberlink is another organisation that has been supporting us with regular blood donation drives since last year. The 3rd drive in the company was organised on 8 August. Again, the volunteers showed a lot of enthusiasm by flashing pictures of others donating through hourly mailers. Direct interaction of Sankalp volunteers with the associates led to more participation as well. In the end, more than 60 people turned up in a company with a total strength of 200 leading to 45 donations. The team at Fiberlink is another example of how effective in house publicity will help in drives
Aegis has been extremely supportive of our cause for many years. Every year 2 blood donation drives are organised in each of their 2 offices. On 13 August a drive was planned at their Essar House office. Thanks to good publicity, there was a good crowd throughout the drive. 70 units of blood were collected with close to 100 people turning up with an intent to donate. Given the fact that the employees have usual calls to attend, this is a quite significant number. A big thank you to all the blood donors there.
August also saw 3 new organisations join hands with us to make safe blood available in the city with regular blood donation drives. Temenos, Kemwell and Artech came forward to organise their first blood donation drives. Again all of these ensured that the message and importance of the cause is explained to people via talk sessions, mailers, posters etc. Enthusiastic donors came forward in huge numbers and all 3 camps had a good ratio of donors versus total employee strength. While 28 units were collected in Temenos and 30 in Artech, 101 units were collected at Kemwell. The management of all 3 organisations have promised to work for more drives in the future and continue to bring hope and joy to patients. We thank the donors and the administrators to have made this fresh positive start to contribute towards voluntary blood donation.
Finally, the last drive in August was held at National Instruments. NI is another friend organisation who helps us is need - be it with blood or disaster management projects. Although there are 2 offices that are 10 km apart, donors from both places come in to donate. This shows how selfless and concerned voluntary blood donor heroes are. A pre registration and publicity before the event saw about 61 people out of 200 confirm their participation. 47 of them finally donated blood. Electronic donor registration was used for the first time and it helped in creating a positive impact on the camp setup. Donors were more informed and filled in the questionnaire with more caution and most importantly in their own private space. A big thank you to NI for their continued support.
ESI, Rashtrothana, Bowring, Victoria and Sanjay Gandhi Hospital blood banks were the beneficiary blood banks in these camps.
Thalassemia Prevention, Management and Cure
From Management to Cure
For last 3 years Sankalp has been trying to help the children suffering from thalassemia. However, thalassemia requires blood transfusion and treatment for a lifetime. The only cure is Bone Marrow Transplant. Sankalp India Foundation in association with Cure2Children, Italy had initiated the activity to identify suitable candidates for BMT, offer them free HLA typing and if found to have a matched sibling donor - prepare them for transplants. 15 families were offered free HLA typing of which 4 found a matched sibling donor. After the match were found, the process of preparing the children for transplant was initiated to bring their ferritin level down. After 2 years of planning and preparation we have the first child from our centers lined up for a transplant. The transplant is due to start on October 2014 at South East Asian Institute for Thalassemia, Jaipur. We are keeping our fingers crossed and hoping for the best.
Finding Hope
With the wheel of transplants turning, Sankalp India Foundation with Cure2Children, Italy have taken the next step to identify more families which are eligible for low risk transplants. Over September 2014, another 15-20 families will be offered free HLA typing to identify the ones which have matched sibling donors for BMT. Early detection of a matched sibling donor enable proper preparation both medically and financially for the transplant. A major problem is the prohibitive costs for transplant in most centers in the country. Sankalp India Foundation is closely working with partner organisations to offer BMT on not-for-profit basis to the children suffering from thalassemia. It's a shame that in-spite of a known and reliable cure for thalassemia most families are not able to explore the option of cure only because of financial reasons. Even the first step - the HLA typing costs between Rs 20,000 to Rs 30,000 per family. One step at a time we aim at removing the hurdles in the way of cure from thalassemia for all children irrespective or their financial status.
Hydroxyurea to rescue
Since June 2014 Sankalp India Foundation and Cure2Children are working together to offer hydoxyurea therapy to children suffering from thalassemia. Carefully chosen children who are most likely to benefit from the treatment have been given the medicine under strict monitoring and weekly follow-ups of their blood counts. Hydroxyurea is a wonder drug which is known to positively influence the blood volume requirement, ferritin, the liver size and the spleen size in children suffering from thalassemia. Though the exact mechanism of the action is still not clear, but it is believed that the drug triggers increased production of the healthy fetal hemoglobin in thalassemiacs enabling them to maintain their hemoglobin better and take fewer transfusions. The therapy is already showing positive outcomes and most children are reporting lower blood transfusion need and fall in gradual ferritin levels. This is very encouraging already though it will take some more time to be able to systematically compare and evaluate the benefits.
Cardiac evaluations in full swing
Steady progress has been made on the cardiac evaluations that were started in July. Majority of children from Samraksha and Indira Gandhi Institute of Child Health have been screened for cardiac abnormalities. The children who were found to be showing signs of impending complications have been put on preventive treatment. Preventive intervention goes a long way in saving the individuals suffering from thalassemia from pain and misery. Once cardiac evaluations are done, we aim to work on the preventive intervention on the orthopaedic side.
Introduction of Deferoxamine(DFO) for Chelation
Keeping ferritin low is crucial to the well-being of the children suffering from thalassemia. While all the kids at the centers supported by us are on systematic oral chelation therapy, there are multiple challenges we face. Before the kids enrol at our centers, they have hardly taken any chelation at all. They come with ferritin upwards from 10,000 ng/mL which is way higher than the acceptable limits of < 1000 ng/mL. While most respond positively to oral chelation therapy, there are those who are not responding fast enough. The classical chelation therapy is the infusion of DFO on a regular basis which is given overnight at home. However, this requires the families to purchase the infusion pumps which are very costly. For the children from extremely poor families this is not a good option also because of the limitations of space and hygiene in the places they live in.
To enable rapid decrease in iron level for children who are either not responding to oral chelation or who have another reason to bring ferritin under control rapidly now we will be offering I.V. administration of DFO at Samraksha - the thalassemia day care center at Rashtrotthana Parishat. Though it is logistically a challenge to provide IV DFO at a center, under the supervision of the medical officer, this is the most promising way ahead to manage the ferritin levels of the children who are not responding to oral chelation.
Call for support!
We are still looking for financial support for 100 more kids for regular iron chelation and medical investigations. This apart, having lined up at least 4 families for BMT we would need to support the partial cost of transplants. Please do consider supporting the kids suffering from thalassemia. Your support enables them to live a healthy and fulfilling life.
Disha
After the mayhem of the summer months the blood help-line had a relatively relaxed month of August. Most of the blood requests were either for rare blood groups or for platelets - a consequence of the increasing number of dengue cases across the state. However, there was good representation of the various districts with calls being logged from 25 districts.
A major challenge we face at the help-line is the lack of proper understanding of the blood requirement by most of the patients. Many times it takes more than 1 call to help a patient mainly because they are not sure of which blood component is needed for the patient. Clearer communication by the hospitals explaining blood components to the patients, especially to those who may not be able to comprehend the component needed by looking into the forms, will be very helpful for the patients.
Sankalp Tech
Sankalp Tech was kept reasonably busy in the month of August. The following were the major tasks undertaken.
Electronic Donor History Questionnaire
Rakta Kranti team of the organisation is moving towards a more powerful, intuitive, time saving and accurate mechanism to capture the donor’s medical history prior to donation. For this, a new platform has been created. Last month the team deployed the application for the first time at the blood donation drive organised at National Instruments with very encouraging outcome. This month onwards, the application will be utilised in several more camps before concluding the validation and making it an integral part of all Sankalp blood donation drives.
Electronic Camp Feedback
After electronic donor registration, the next step to make our camps more eco-friendly is to convert the feedback forms from paper to e-forms. Starting August Rakta Kranti team has started making use of electronic camp feedback forms to be used by the organisers to give feedback to Sankalp about the various aspects of blood donation drive.
Informed Donors
The good news from the ThalCare front is that we have established a mechanism by which donors can directly log into ThalCare and check the progress of the children they are supporting. Another major step to foster transparency and accountability.