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“A year ago, a child, a Cuban hemophiliac patient, was on a wheelchair. Today everything has changed for him, because with the application of a new treatment, we have achieved that he can have a practical normal life; he goes to school and he can play”. This happy piece of news reaches us through Dr. Dunia Castillo González, Head of the Cuban National Program of Comprehensive Attention to Hemophiliac patients, and other similar diseases.
Thanks to this young specialist, we can get informed more deeply how life of these patients in the Island develops. The work of the National Reference Center, and Rector of the program of attention to people with hemophilia in the country; the affectations these sick persons suffer, because of the financial economic blockade against Cuba; how to help them, and other items of interest about the disease. We wanted to start our dialogue with a basic question:
What is hemophilia?
Hemophilia is a blood hereditary disease, which appears because of alterations of the genes, it is predeterminated because the patient has family antecedents, but there are patients with new mutations, which occur to them; that is to say, this sickness was not described in any previous member, and it appears in a boy, this disease affects male children, because it is an affection bound to the X chromosome (sexual chromosome).
How can the family detect it?
The family can detect it if they are facing one of these cases, because during the first moments of life, during nursing, when these little patients are severe and start coming to little blows with the cradle. some of them show little hematomas, very typical, rounded and hardened, this indicates already a suspiction that they may have come down with hemophilia. These patients, once they are a little bigger, bleed by the articulated joints and muscles, which characterizes this illness.
How does this illness behave in Havana province?
In Havana, there are 125 persons with hemophilia. Patients are classified according to the severity of their illness, in patients A and B, the majority belongs to the hemophilia group A which is the most frequent (deficiency of the eighth factor of coagulation), and B (deficiency of the ninth factor of coagulation). The incidence this last one has in the whole country is of 70 patients, 28/29 of them in the capital live around the city. This figure changes every year, due to emigrations or death.
We know there exists an Organization of Comprehensive Attention to the Hemophiliac Patients, from the provinces Pinar del Rio (the westernmost) to Guantánamo (the easternmost). In Havana we have the National Reference Center for this health service, with home in the Institute of Hematology and Immunology.
How does the service in this center function?
Here, in the program, a multidisciplinary team works, conformed by hematologists, orthopedists, physiotherapy specialists, stomatologists, clinical laboratories, genetics, social work, and clinical laboratories, where the sick persons are treated, in an integral consultation, Wednesday morning.
In the Center, there is an urgency ward, where patients go with hemorrhage problems, produced repeatedly. They are treated with concentrate of Factor 9 of coagulation for their hemorrhage situation.
The urgencies are assisted through the Provincial System of Medical Urgencies (SIUM), which when facing an event of this kind, from any municipality where the hemophiliac patient lives, he is moved to the Hemathology Institute, where all conditions of human resources and medications are given to treat such urgencies.
It is time to let you know how our country works in harmony with international investigations about this illness and its treatment, and how Cuban hemophiliac patients benefit from.
The other item is that we are already incorporating some cases of children to the Preventive Treatment. They are shot twice or three times a week with the medication of low dose, as if they were moderated hemophiliac patients, and practically free from severe hemorrhagic manifestations; so, we have cases from different provinces, as the case of a child from Pinar del Río, who was mentioned at the beginning of the interview; a very severe patient, who when he started this treatment a year ago, was on a wheelchair. Now, he is practically living a normal life; he goes to school and can play.
Does it, then, constitute an important achievement for the patient’s quality of life?
Yes, after the Pinareño child, patients from Havana have been included, a patient from Granma province. This year, we expect to include six more patients from different provinces so as to complete ten.
This, no doubt, means an important step, since the preventive treatment diminishes the secondary alteration of the articulations of the hemophiliac patients, fundamental disability in them; also the orthopedic disability diminishes with the preventive treatment. With its application, his articulations are practically normal or do not confront hemorrhagic events so repeatedly.
As we are talking about international research applied here, what can you tell me about the medications or related equipment with the medical services to hemophiliac patients, and the afectations to the sector of health regarding the economic financial blockade against Cuba?
It does affect us, because the concentrates of the blood coagulation factors generally belong to transnational enterprises of the capitalist world, that many a time can not commercialize with Cuba, some other time, we have to face the barriers set by the blocade, which we have to overcome. Although our country invests millions of pesos in the acquisition, all necessities can not be covered.
But the Cuban pharmaceutical industry is working hard. In this sense BioCubafarma is working on research to attain concentrate of coagulation made in our country.
Which is the life expectancy the hemophiliac patients reach in Cuba?
Life expectancy of Cuban hemophiliac patients is around 45, according to studies carried out two years ago. The study is being retaken, and we are extending the research up to December 2014.
We have, however, patients with eighty years of age, who belong to the group of those not so severe. They are moderate patients, benignant, who have had a normal life. Among them, patients integrated to work: doctors, mechanics, drivers, etc. In general, life quality and expectancy of all have improved much.
About the support among patients toowards the program?
As hemophilia is a chronic desease, there are groups of patients and relatives who get together to support the doctors to get the knowledge about this disease.
In regard to the Medical Network, there exists a hematology service in all provinces of the country, with provincial coordinators for the attention to hemophiliac patients, and integral centers of attention in Pinar del Río and Villa Clara. Two other centers are being buit: one in Santiago de Cuba and another in Holguín. The others are small centers, but they receive support from the Institute with medical mini-equipment. In two years, it is expected to have been over with the National Network of the Centers from Santiago and Holguín
S omething you should know; it is important to donate blood in favor of the hemophiliac patient.
A hemophiliac patient may have important bleeding because of a serious traumatism, an intraabdominal bleeding, or a politrauma. In that case, they require a treatment with packed red blood cells or red blood cells. That is why the call to voluntary donors. These should know that these patients, although do not need whole blood, they do need some of its components; for example, fresh plasma and the cryoprecipitate, which is another component of blood, essential for them. This depends on donations, if these are missing, there would not either be these products.
There is only a coverage of 60/70 per cent of patients who have to be treated with specific concentrate for the coagulation; the rest, 30% are treated with fresh frozen plasma, and with cryoprecipitate. To solve this, we depend on donations; that is why the call to the possible donors to join this humanitary action; above all, healthy youngsters who can offer their help to these patients in need of it.
With the aim to raise the consciousness of our population with this call, more promotion should be done; either face to face in the debates of the neighborhood, at the level of the physician’s office, and also through the mass media. That is Dr. Dunia’s opinion, who tells us, related to this, that a very valuable initiative was developed last year, on the occasion of the Day of the Blood Donor, led by the Institute of Hematology. To this event fifteen young painters were called together, to create works inspired in the donation, from their own point of view, towards that solidary gesture, which were showed in the institute, in an exposition entitled: Expo.Blood.
Translator : Reinaldo Fernández
