No disease is nice. Much less one that a person has to fight with all their strengths, fight while that person vanishes in front of the eyes from those who surround them. This fight is against cancer. The war against children’s cancer has been a challenge for several years for many it’s curable, but there is a high rate of children who are diagnosed but die because of a lot factors that could be prevented.
The Maria Jose Foundation
The Maria Jose Foundation was born due to a personal reason. A fight between life and death that was lost before time. A fight that sadly ended Maria Jose’s life at an early age. A fight that is marked through the pain of the illness and the impotence before the failure of the treatment provided.
The failures were reflected in the management of treatment at home or the day to day of special cares and a t the same time shared experiences with other parents.
All has to be said, next to Maria Jose there were great doctors, great legal assistance, with excellent psychologist, nutritionist and family support. What was missing was an entity that would guide the parents through the whole treatment.
The idea of this foundation is not to put barriers with the diagnosis Onco-hematologic that presents in minors without giving importance were they are from, the institution responsible for their treatment, socio-economic level or being less than 18 years old.
Solkes: why was the foundation born?
F.M.J: Fundación María Jose was born from the experience that the family Saavedro Bello had live with the diagnosis and the fight for their little one Maria Jose, who died when she was 28 months old. Yipsel Bello, the mother of this little warrior is inspired for the experience and created the foundation to provide support for girls, boys, teenagers with the cancer diagnosis and complementary support to the medical treatment,
Which in many cases they provide more and better adherence to their survival.
A health system in crisis
Sadly the Colombian health system is in a crisis and the scheme of the insurance is based on economic criteria, it forces the patients to suffer a number of delays (due to economic themes, since these treatments are very expensive) and denials of different health services that the companies of the health insurance companies.
And it is precisely in February 2015 the Ombudsman found that 60% of children with the disease died due to the lack of medical care. At this time childhood cancer is considered a curable disease and treatment has been one of the landmarks of modern medicine. But the lack of supplies of drugs and immediate attention contribute to increasing the number of victims. It is totally unfair!
Solkes: what are the problems that a minor has when faced with diagnostic of cancer in Colombia.
F.M.J: currently, the main problem a child who is diagnosed with cancer, is the access to health services in condition of opportunity, accessibility, affordability, integral and quality that is guaranteed by the Law 1338.
The children’s cancer law
It was hard to believe it but in Colombia there is a law for children’s cancer. And at the moment is when more questions started to arise.
Solkes: what is the children’s cancer law?
F.M.J: it is the norm approved by the National Congress of Colombia in 2010 with the number 1388, is intended to guarantee rights and services for the health care of children and adolescents diagnosed with cancer towards decreasing the mortality rate reported for this population. Regulates topics such as the database, insurance, comprehensive model of care, provision of health services, comprehensive support, tracking and monitoring, among others.
This means that all children under 18 who have confirmed diagnosis of cancer at any stage, types or modalities. Once the diagnosis is confirmed cancer all services require that the child be authorized holistically.
These services will be provided by units’ childhood cancer care of your EPS or local authority. In addition to this, the family of the child shall be entitled to receive preventive treatments to prevent the absence of these measures jeopardize the effectiveness of treatment of the child.
The care includes the following: consultations, diagnostic tests support, patient monitoring, medication and surgery.
All procedures will be equivalent to the services included in the mandatory health plan by the insurer or the local authority management.
Solkes: How do you work in order help these minors?
F.M.J: We were born with the aim of being complementary to medical treatment from the social dimension; sensitizing, educating and guiding caregivers, families, society and state. In order to work for the quality of life of children and teens diagnosed with cancer and especially for those highly vulnerable; reducing barriers to access treatment, thus being the only without excluding any organization working in Bogotá regardless of E.P.S., I.P.S. or type of relationship (taxpayer or subsidized) of all social strata and oncological diseases.
How do they work?
The foundation is a pioneer in the campaign to collect plastic caps in Colombia to provide mobility and nutrition in order to avoid abandoning treatment. They are also the creators of the “Doll Maria Jose”, a versatile toy that aims to provide support to children and their caregivers to understand their medical, psychological and examination process, and thus reduce the stress of the unknown and ensure better adherence to treatment.
Another program they have done is “Plan Padrino Apapachando” specialist in our beneficiaries and donors with monthly information, with which offer psychological support, legal assistance and nutritional support.
On the other hand, the “Adventurer Project” help with equipment for assisted mobility in specialized care through the game; initiators recreational activities for patients and caregivers as recreational spaces construction and social integration with dignity, goodness, love and respect.
Having all the information on how to attack these diseases and how to survive the process with integrity is more than necessary. With this in mind, they have constituted the only Latin American Congress on Childhood Cancer level for caregivers.
Solkes: How do you work with patients under 18 and their families? Do they give comprehensive support or just focus on those who are ill?
F.M.J: Social support services provided by the FMJ are aimed at children and adolescents diagnosed with cancer and their families. That is why from the psychological support, to recreational activities include family involveme
Solkes: What objectives do you have?
F.M.J: Both current programs and ongoing projects and future pursue the main objective complement medical treatment for cancer whose primary goal is to generate more and better adherence and increase national survival rate for childhood cancer
Solkes: Until now what have you achieved?
F.M.J: The FMJ is emerging as one of the Organizations of Civil Society regarding childhood cancer locally, because from the hard work and the amplitude in the range of services has gained recognition and leadership in the sector. But the main achievement of the Foundation will always be the quality of life and bring welfare to our children, who appreciate all this especially.
What needs to be done
Although they have opened many doors for children with cancer and their families, their is still much to be done.
The FMJ wants to become the national benchmark in the field of childhood cancer. It is planned as the forerunner of a major national center for comprehensive services for children with cancer and after this dream has been preparing and getting ready with every experience accumulates.
Solkes: Why is it necessary to help minors in Colombia and in the entire world?
F.M.J: Given its natural vulnerability, it is a constitutional duty that has the whole society in protecting and supporting children. In this sense, conditions such as disease, malnutrition, insecurity and others require the intervention of state agencies and civil society towards improving all the living conditions of children and adolescents.
Solkes: you have the opportunity to say something to the readers what would you say?
F.M.J: We all live in a better world longing, sometimes we think “If it were me, I’d … If it were me, I’d say … If it were me, I WOULD CHANGE …” This is not to stay in these idealistic phrases it is then to take the real reins from our feelings, from our passion since our reason, from our soul and boot from the least to me, and extend it to my family, my friends, my social setting, my community.
At this very moment are developing a project called “I’m Opportunity Change for Children with Cancer in Colombia”, which aims to link all the actors involved in the care of Children’s Cancer in order to strengthen, train, guide and coordinate to the decrease in the lack of opportunity in the comprehensive care of children and adolescents with this diagnosis.
They are also working on the project we call “response and Understanding the Children with Cancer in Colombia”, which aims to improve the conditions of health care through awareness, training and commitment of different institutions providing care services childhood cancer. This will start soon, it is estimated that its contribution will make a difference because it is developed from a successful model of care in our city.
The fight against this evil is not dependent on a single entity but of all people. Unfortunately, we are many people who have had a member of our families die from childhood cancer. The success of becoming an excellent human being does not go in the amount of changes you have made, if not actually in the changes that you generate from within each being.
