Why HELP3

A “ non-profit” italian organization promoting global access to professionally and financially sustainable care in the area of “hemato-oncologic Pediatric diseases”

Overview: Cooperation of two Italian NGOs (Help3 and S.O.S.G.T) in subsaharan areas against “sickle cell disease“ and other hematological diseases

Background

Every year more than half a million children develop cancer, leukemia and as many are born with life-threatening hereditary blood disorders such as thalassemia or sickle cell disease (SCD) all over the world (Weatherall et al. Blood 115, 4331, 2010). As a group, they represent the most common Non-Communicable Diseases (NCD) in many emerging countries where they often account for the second cause of childhood death after accidents; most are curable but only a minority of children have access to appropriate care because of lack of trained personnel and/or financial resources.

AIMS

Help 3 (i.e. the cure of childhood hematology-oncology diseases in “non income countries”), is a non-profit and secular organization created troughout 2014 in Monza (Italy) by a group of medical and not medical professionals with the principal aim to support all those initiatives directed to improve diagnosis and treatment of malignant and non malignant disorders where for many reasons there is a big gap in knowledge, management and obtained results in terms of disease free survival. Secondary aim is to get an economical sustainability for all those needs useful to maintain a continuous education/training , the provision of drugs and/or facilities which constitute fundamental needs already available in pediatric hemato-oncologic Units of “high income countries “.

Help 3 has been registered as Italian ONLUS (i.e. NGO) since June 2014 .


Vision

To expand long-term access to appropriate care for as many children as possible with cancer and severe blood disorders in emerging countries and to promote prevention and family support as well as health care empowerment.


Mission

To work together in order to transfer experience and skill that will serve to make proficient medical nurses teams in low income countries so much to be independent in their professional activity and to take care of the patients in their countries.


Collaboration

All NGOs or “non profit” Associations are welcome in collaborating with Help3 in providing technical/scientific and practical support.

Contact have been set up especially with “Ospedale S. Gemma Tanzania Association” (an Italian Charity located in Monza-Italy and with an ongoing medical project for a regional hospital in Dodoma –Tanzania) and “Informatica solidale Association” (an Italian Charity located in Milan-Italy, constituted by a team of experts in computer science , mainly involved in setting up a common “data base” for the Hospitals linked to our project).

Another important Link based on educational activities , free exchange of personnel between S. Gerardo Hospital (Monza , University of Milan-Italy), S. Raffaele Hospital (University of Milan-Italy) and hospitals of foreign ”low-intermediate income countries”, is already on the course and will be implemented.


Help3 “Funding”

Economical supports will be based on private Grants, donations and events.

Any kind of no profit activities directed to “fund raising” are warranted in and outside Italy.

Help 3 Team

Around 10 people are involved in Help3 on going projects :

1 President
3 volunteer doctors particularly experts in the field of childhood hemato-oncologic disorders and “bone marrow transplantation”
3 Volunteer nurses with a certified experience in the assistance of children with hemato-oncologic disorders
1 accountant
2 professionals with particular experience in: fundraising and social activity, public relations , social and cultural events ,media social activity.


HELP 3 PROJECT

Main aim of the project : to decrease the high mortality rate of SCD children below 5 years in TANZANIA and in UGANDA

The project started on 2014 combined with S. Gemma Hospital Association for improving the diagnosis and treatment of “SCD” which is the most frequent hemoglobinopathy in the world because every year 6 millions of carriers and 400.000 homozygotes are born with this disease.

Around 75% of SCD affected children are located in the “subsaharan area” with an incidence of 1 newborn every 100 -150 neonates ( 20.000 in Tanzania each year).

More than 90% of those children are bound to die without an appropriate treatment . In Tanzania around 10.000 SCD children below 5 years die every year.

Three Tanzanian hospitals (Bugando Medical Center University of Mwanza; – St. Gemma designated hospital Myiujy –Dodoma; Mnazi Mmoja hospital – Zanzibar) and one hospital located in Uganda (S.Mary Lacor Hospital, Gulu University ) were initially involved in the project. Up to 2018 two other Hospitals joined our project (MAMC-Dar Es Salaam and BMKH – Dodoma) and the first results of this experience have been presented in a Tanzanian meeting on March 2018.

Collaboration with local health Authorities in order to sustain the project and to obtain the permit to use the donated drug ,” Hydroxyurea” (which is essential for obtaining SCD long-term survivors as recommended by WHO), was strongly realized.

The project has been implemented throughout 2016 including Mnazi Mmoja Referral Hospital (Zanzibar) and Muhimbili University Hospital and Alliance Science (Dar Es Salaam) which is the principal SCD Center in Tanzania .

Before our intervention only 70 SCD children out of 7000 followed by the above hospitals were undergoing the medical treatment (Hydroxyurea) that can improve both the survival and the quality of life.


Preliminary results

a)After our intervention and within 2017 more than 250 SCD children in total have been treated , but the target of our project is to treat at least 500 SCD children .

b) Outpatients SCD departments have been activated in four out of the five involved hospitals (Muhimbili University hospital was already well organized)
c) An economical support for improving the diagnostic capacity of those Hospitals who are lacking Laboratory specific tools (Electrophoresis of Hb , Transcranial Doppler for SCD cerebral complications) has been provided

d) A “monitoring” of the obtained results (regarding mainly the Overall survival and the quality of life) has been activated on 2015 by a “data Base SCD oriented” (set up and donated by Informatica Solidale Association) and will be finalized to follow also those patients who are bound to benefit from “Bone marrow transplantation” that has been demonstrated to cure more than 90% of SCD children . In this regard the

Final step of Help3 project : to set up a Paediatric haematologic and Bone Marrow Transplant Center within 2018-2019 in one of the Tanzanian hospitals having the standard requirements for this modern treatment.

According to “problem oriented” treatments in the field of pediatric hemato-oncologic diseases ( mainly childhood Leukemia) , Help 3 aims to be operative in other ongoing projects combined with other Charities who are working since many years in sub-saharan Africa areas.


STRATEGY

Local hands-on focused training during the start up phase by a team of experienced Help 3 or other Charities professionals.
Whole-team capacity building and task-shifting by on-line/on-site intensive tutoring.
Patient-specific treatment plans designed according to evidence-based clinical practices and aiming at minimizing prescription errors while offering clear and simple operating instructions to point-of-care professionals.
High standards of care, accountability and quality assurance are used based on a common “Data base”.
Judicious use of resources minimizing expenses by primarily implementing evidence-based recommendations.
Capitalize on the potential of childhood “hemato-oncologic” therapy as well as bone marrow transplantation for institutional empowerment and higher medical education.
Promote laboratory and clinical research, international partnerships and visibility in scientific media.
Involve parents, associations and other constituencies sensitive to the vision of the project and assist in international fundraising.
Involve all the participants and/or personnel of Help 3 in a continuous exchange of their own experience by mean of cyclic “Help 3 ” open Internet meetings (Skype meetings, Telemedicine…)
Engage local institutions and health-providers interested in collaborating and referring patients.
Promote social entrepreneurship initiatives involving needy families as a means of generating resources for the cure of their affected children.
Promote partnership with other National and International Associations involved in low income countries
MAIN AIMS

Identify passionate team leaders with the appropriate background and commitment.
Select suitable medical centers sharing this project’s vision and willing to provide facilities and human resources.
Mobilize start up funds by grants, donations and/or loans, both nationally and internationally.
Define site-specific operational principles and procedures.


SCIENTIFIC and RESEARCH PROJECTS

Set up local or multicenter studies with a common “data base” organized by Statisticians and Data managers particularly involved in the projects
Teaching to “ low income countries ” medical and nurses personnel how to publish single or multicenter trials
Presentation of the “interim” or final analysis of the obtained results in International Meetings committed to hemato-oncologic diseases
Using the results of the specific studies as a model to improve Help 3 activity .


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