Hasta hace dos meses, en concreto hasta el 24-4-2012, yo podía hacer una humilde campaña desde mi web para pedir la donación de médula ósea. Sin embargo, ahora ya no puedo animarte a que dones un poco de sangre para salvar la vida de Janire, por ejemplo, o de cualquier otra de las 5000 personas que cada año son diagnosticadas de leucemia en España, porque desde hace dos meses la modificación del decreto ley que rige la donación de órganos, me impide hacerlo a menos que obtenga permiso administrativo previo de mi comunidad autónoma y de la Organización Nacional de Transplantes (ONT). De hecho, ya han comenzado la labor censora dirigiéndose a algunas webs.
Una limitación sorprendente si tenemos en cuenta que España está a la cola de donantes de médula. Aquí hay un 0.2% de donaciones frente al 10% en Israel, el 2,6% en Portugal o el 2,5% en Alemania. Y no es por falta de solidaridad, sino por falta de información. Porque poca gente sabe que donar médula es muy sencillo. Para formar parte del registro de potenciales donantes basta con un simple análisis de sangre. En caso de que seas compatible con alguno de los enfermos que esperan su oportunidad, la donación consiste en extracción de sangre periférica, en la mayoría de los casos, u osea, en una minoría. En este vídeo lo explican de maravilla.
Todavía sin poder creer lo que está pasando, un grupo de ‘insurgentes’, los Pelones Peleones, empeñados en salvar vidas al margen de decretazos y trabas administrativas, ha puesto en marcha una iniciativa para reclamar al ministerio que promueva campañas de donación en lugar de silenciarlas. El viernes a las 11 de la mañana, en la puerta del ministerio de Sanidad (Paseo del Prado, 18) estás invitado a entregar 100.000 firmas para que comprendan que no vamos a quedarnos quietos mientras se esfuma el futuro de tanta gente.
¡Nos vemos!
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Pues vaya una pena. Si pudieses animar a la gente quizás yo me habría enterado y aprovechado para ayudar un poco. Pero como no puedes hacerlo yo no me enteraré nunca y tendré que ir a donar porque se me ha ocurrido a mí…
Extractado de la Ley que tú misma enlazas:
“La promoción y publicidad de la donación u obtención de tejidos y células humanos se realizará siempre de forma general, SIN BUSCAR UN BENEFICIO PARA PERSONAS CONCRETAS, y señalándose su carácter voluntario, altruista y desinteresado.”
Sé que te mueven buenas intenciones, Pilar, pero creo que se pueden entender perfectamente las razones que han movido a que se haga así. Imagina que una hija del presidente de Mercadona necesitara una donación de médula. Su papi contrata una campaña publicitaria en prensa y televisión y ya está hecho, ¿verdad? En cambio un niño en las mismas condiciones que haya nacido en un poblado chabolista no tendría tanta suerte.
Me parece fantástico que hagas una campaña en favor de una niña llamada Janira, pero sería aún mejor que promovieses la donación de sangre en general, sin beneficiar a personas concretas, tal y como pide la Ley. Y lo de la autorización que hay que pedir es para entidades, no para personas físicas como tú.
Rebeca:
Explícame por qué sería mejor que promoviese la donación de sangre en general que no lo acabo de pillar. Que yo sepa de la donación de Sangre, hay campañas, hay autobuses, la gente sabe en qué consiste y desgraciadamente de la donación de médula ni mi médico de cabecera me sabe atender con corrección
¿Por qué dices que hay que informar más de la sangre que de algo que no se da a conocer? ¿Es que acaso no se quiere dar a conocer? ¿Que tienes en contra de la donación de médula?
¿Quien está beneficiando a personas concretas al tratar de dar más información sobre la donación de médula?
O mejor dicho ¿A qué personas concretas trata de beneficiar, a cualquier enfermo de médula?
¿Sabes que si el de Mercadona hace una campaña y la gente va a donar, esos donantes son universales para todos, y remotamente para su hijo? ¿Qué tipo de información tienes para hacer este tipo de comentarios?
¿Te has leido bien lo que ha escrito Pilar?
mmmm….
Para la señora o señorita Rebeca Ruiz:
Estimada señora, ane todo voy a tener en cuenta, dando por sentado que es vd. profesional en la materia, que el permiso sólo lo han de solicitar las entidades. Dicho esto, está claro que vd, tiene la gran suerte y, espero que le duré mucho de no tener ni haber tenido a alguna persona cercana, con aplasia medular, cancer u otras tantas enfermedades. Me parece muy bien que haya leyes pero ¡OJO! PARA HACER UNA LEY DEBERÍA DE, ADEMÁS DE TENER CONOCIMIENTOS DE LEYES, SABER DEL TEMA, la invito pues, a que si tiene un hueco se pasee durante un mes, por la planta de oncolofía y hematología de cualquier hospital de España, entre, visite y vea, aunque sólo sea por unas horas por lo que pasa un enfermo que, en estos casos, suelen que tener que estar en habitaciones de aislamiento, pero no tema, no le contagiaran nada, son ellos los que corren el riesgo de ser contagiados por un simple resfriado que les puede matar. DESPUES LA INVITO A QUE VUELVA A PENSAR EN SU DEFENSA DE ESTA LEY. ¡ERRAR ES DE HUMANOS1
Rebeca:
¿Tu sabes lo que es la donación de médula? ¿Sabes los problemas que existen en España para hacerse donante? ¿Sabes que hay comunidades Autónomas que no tienen ese servicio? ¿Sabes que cuando quieres donar un cordón de tu bebé hay mas información de bancos privados que de donaciones altruistas???
Supongo, y espero que no tengas a nadie en espera de donante de médula, porque si te informas en profundidad te darás cuenta de que esta ley no es solo cuestión de que alguien pueda acceder preferentemente a un donante, QUE NO ES EL CASO QUE ESTÁ EXPLICANDO PILAR PORTERO!! sino que la ley que han hecho para bloquear a DKMS es una ley que no solo impide que una entidad de otro país venga aquí a hacer una labor que nuestro gobierno no hace, sino que es una ley por la que informar sobre un acto altruista es considerado objeto de sospecha y por la que hay que pedir permisos especiales solo para que puedas ir a un sitio a decir a la gente que donar médula es fácil y necesario. Estan censurando webs particulares de pacientes que ponen información que no les gusta a loa ONT porque según ellos, dicen que podrían tener una avalanche de donantes que no pueden gestionar en sus instalaciones ni tienen presupuesto para hacerlo… e instan a los ciudadanos de a pie a no informar por nuestra cuenta porque dicen que somos demasiado “viscerales” porque estamos implicados… claaro, es mejor que ellos no informen, que no dejen a otras entidades informar y que tampoco dejen informar a los afectados que son los unicos que se mueven…
También si quieres hablamos de beneficios que saca la ONT/sanidad… porque al bloquear a nuestros donantes y que no se puedan hacer en otras entidades lo que estan asegurandose es que cuando realmente esos donantes sean efectivos en España y nos los reclame otro país, nuestra administración también se reembolsará una cantidad que no hacen pública y que no es ni mas ni menos que la que echan en cara a otros países que nos cobran a nosotros cuando la transacción es al revés.
Por otra parte, no debería recordarte que el escrito va con un nombre de ejemplo o con el nombre de las 5.000 personas que al año tienen esta necesidad y que aunque quizá sea porque no estes acostumbrada: HAY GENTE QUE PIDE CONCIENCIACIÓN SOBRE ALGUNA CAUSA SIN TENER INTERES PERSONAL CONCRETO Y SIN CTENER QUE ESPERAR A QUE LES TOQUE DE CERCA… Janire no es amiga de Pilar Portero, es amiga mia. Si la conocieras sabrías lo que es la donación de médula, lo que suponen comentarios como el tuyo y que la gente no esté informada de lo que supone una censura tan brutal como la que han hecho.
Ah! por si te queda la duda: no estoy a favor de DKMS, estoy a favor de la información libre y que luego cada uno se haga o no donante con quien quiera. Pero lo importante es que el gobierno o quien sea haga campañas efectivas, cosa que de momento no está haciendo y que con esta ley no deja hacer a nadie sin un papeleo extenuante y miles de pegas burocráticas.
Ainara, Jose, Janire, estoy con vosotros. Increíble lo que acabo de leer. Prohibiciones, restricciones, nos vetan? Prohibiciones a vivir, restricciones a seguir adelante, vetados para luchar…
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Rebeca:
Janire no es una niña, es una mujer que padece aplasia medular y necesita una médula. Pero no la encuentra.
Si el Sr. Mercadona, siguiendo el supuesto que planteas, hiciera una campaña para buscar donantes de médula, fuera el motivo que fuera, me parecería maravilloso, porque así, al menos, la gente sabría que puede donar médula y salvar vidas.
Todos los medios son pocos para difundir esta causa.
Así que yo voy a seguir usando mi twitter, el de mi negocio, mi FB, mi blog y lo que haga falta, para gritar que es necesario.
No hace falta promover la donación de sangre, estamos muy concienciados de ello. La gente dona habitualmente. Pero, como puedes comprobar, no se tiene ni pajolera idea de lo que es la donación de médula.
Ya puestos, te invito a que te hagas donante.
Yo no puedo, pero a lo mejor tú puedes, altruistamente, salvar la vida de alguien.
Veo muchos comentarios defendiendo que se pida médula para Fulanito y solo para Fulanito. Todos tenemos derecho a que se dé publicidad al caso de una persona concreta para que pueda salvarse mientras que otros muchos mueren sin recibir una donación.
Pues nada, estupendo.
Y no soy profesional de la materia: leo la ley y la interpreto. No es tan difícil, se trata de conocer tu propia lengua materna y tener comprensión lectora.
detras de las palabras estamos las personas. Las leyes las hacen los humanos y dicen que “es de sabios rectificar”… esa ley pone mas trabas que recursos. Así que algo falla: no se puede solo prohibir y censurar y no dar una solución al verdadero problema.
Aunque veo que no has entendido nada! NO PEDIMOS QUE SE PUEDA DONAR PARA ALGUIEN EN CONCRETO NI QUE SE PIDA DONANTES PARA ALGUIEN EN CONCRETO!!
1.- La donación es y seguirá siendo anónimia y altruista!!
2.- SI SUPIESES ALGO DE LA DONACIÓN DE MÉDULA, sabrías que aunque por mucho que quiera alguien la compatibilidad es muuuy difiil con cualquier enfermo, así que pedir que te hagas donante para alguien en concreto es absurdo!!
Si quieres verlo bien, y sino sigue quedándote con la mitad de la información… ya que dices ser donante, espero que des un paso mas y te enteres de lo que realmente pedimos en el link que pone Pilar… que no es para nada que se puedan hacer campañas para una persona en concreto!! Por favor, primero deberías leer lo que pedimos ahí los enfermos, y no solo leer la ley.
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Ah, y soy donante.
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Leyendo los comentarios de respuesta a Rebeca parece que la mayoría de la gente no ha entendido su postura. Lo que dice Rebeca, y yo estoy de acuerdo, es que ve bien que la ley intente que no se promuevan campañas para personas en concreto porque aunque ese caso pueda acabar bien hace que muchos otros queden en el olvido. Es mucho mejor y más justo para todos los enfermos que se potencien campañas generales que animen a la donación independientemente de a quién vaya dirigida, de elegir el destino de la donación ya se encargan los profesionales.
Lo que está claro es que ni tu ni Rebeca habeis leido el link de Pilar que lleva a la información de lo que se pide al Ministerio de Sanidad y a la ONT . Que es precisamente campañas de información general y mas recursos a los profesionales sanitarios para poder ejercer esta labor. En ningún momento se piden apoyos a campañas personales, ni dirigidas a personas concretas!!
Por favor, no lieis a la gente confundiédola con información que no corresponde a lo que se pide!! Si no se sabe de un tema, y mas habando de gente enferma y temas por los que se juegan la vida, por favor no especuleis con afirmaciones que lo único que hacen es quitarles esperanza de vida por la confusión que se genera!!
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A mi me da igual que haya una campaña que pida médula para alguien en este instante. Es difícil que yo pueda ser compatible contigo, pero se están pidiendo donantes para ese alguien y habrá gente que se movilice, y quedarán registrados como donantes, y habrá más médulas disponibles para más posibles enfermos. Esa es la postura que yo defiendo.
Y yo pido donantes en general, y conocimiento del proceso. Y ayuda. Porque aquí nadie parece saber nada del tema…
Estoy consternada leyendo vuestros comentarios. La falta de respeto con la que se están contestando algunas opiniones y la falta de entendimiento que existe entre las personas y de la ley.
No está penada la promoción de la donación de órganos, ni mucho menos, es más esta semana es la semana contra la leucemia y desde la Fundación Josep Carreras se ha hecho una campaña extraordinaria promocionando la donación de médula ósea. Lo que regula esta ley es la promoción de la donación para una persona concreta, y yo, como trasplantada de médula que soy, como voluntaria de diversas asociaciones y como trabajadora sanitaria estoy de acuerdo en que la donación de órganos, de sangre, de plaquetas, de cordón umbilical, etc etc etc es un símbolo de altruismo y generosidad que debe hacerse independientemente de qué paciente sea beneficiario, porque en el cáncer, TODOS SOMOS IGUALES. Y lo que debemos hacer es unir nuestras fuerzas y no fraccionarlas, porque en el fondo de nuestros corazones todos luchamos por un fin común: QUE TODOS LOS PACIENTES, INDEPENDIENTEMENTE DE SU CONDICIÓN SOCIAL, TODOS, seamos beneficiarios de la solidaridad del resto de personas.
Por favor, luchemos juntos por un fin común.
gracias
RESPUESTA A UN COMENTARIO DE ESTE ARTICULO:
Vamos a ver; yo he realizado una de esas campañas masivas; en el cartel ponía: “puedes salvar una vida, puede no ser la mía”.
Cuando un padre pone eso en un cartel ya puede imaginar que está pidiendo donantes para su hijo (como era mi caso), pero que tenía claro que era para cualquier persona.
También quiero indicar que no se saca ninguna muestra de sangre ni se hace el tipaje HLA (para conocer la histocompatibilidad) si no se firma un consentimiento informado en el cual se indica claramente que la donación, en caso de producirse sería para cualquier persona (recuerdo que las posibilidades de que haya una persona compatible varían de 22.000-40.000-100.000 según diferentes fuentes; cuando mi hijo necesitaba el trasplante había más de 88.000 donantes inscritos sin contar los cordones umbilicales y ninguno era compatible con mi hijo.
También quiero decir que, según nos comentaron, gracias a nuestra campaña se hicieron en tres meses en Cádiz el mismo número de donantes que en todo el año anterior (aunque no nos dijeron el número de inscripciones).
Esto quiere decir que ahora hay más posibilidades de encontrar un donante por el simple motivo de que hay más personas inscritas.
Por desgracia las instituciones que tienen que promover este tipo de donación no realizan campañas a nivel nacional (salvo la Fundación Carreras en momentos puntuales, y ahora con el nuevo Plan Nacional de donación de médula ósea se supone que sólo lo haría a nivel autonómico ya que se han derivado competencias a las comunidades autónomas).
Por tanto, espero que ningún familiar de ningún empresario importante, periodista famoso (caso de Concha García Campoy que por desgracia falleció) deportista de élite o similar tenga esta enfermedad, pero si la tienen, espero que haya tal movimiento para poder concienciar de la necesidad de donantes DE TODO TIPO que aumente el número de registros en REDMO, de órganos… Gracias a la desgracia del tren en Galicia han aumentado las donaciones de sangre; y deseo de corazón que no vuelva a pasar una desgracia como esa.
Solo con información y educación al respecto se podrá conseguir que aumenten en número de donantes y donaciones, por eso pequeñas asociaciones o particulares hacemos las campañas que podemos, financiadas en muchas ocasiones por nuestros propios bolsillos.
De modo que mientras se ponga “salva más vidas, no solo la mía”, “puede que no sea para mí, pero será para otra persona”, o cualquier cosa que indique que es para ayudar a quien sea. BIENVENIDA ES CAMPAÑA.
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