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I
am going to be born in Mexico, which worries me. Soon I will be Mexican
number 100,847,251. We are already more than one hundred million, and
to be born in Mexico is in itself a great adventure.
I am happy that I already know
my name. I will be called Yair Alexis. Well, at least that is what my
mom said. My father’s name is Alejandro and my mother’s is Anna Karina.
I am fortunate because here, all the boys are called José and all the
girls are called Maria. I am going to be born in a new Mexico, one that
never stops changing. Things are still not moving at the rate we would
like—but I am going to be born, and that is a blessing.
During these months inside my
mother, I have learned that I have hemophilia. That means that my blood
will not clot adequately, and I will depend throughout my life on a special
medicine called factor VIII.
One of the talks I have enjoyed
the most was the one I heard the other day. It was my Tata (my maternal
grandpa) speaking. He spoke to the whole family about the Mexican Health
and Social Security System. Here’s what he told us:
"In Mexico, 52 million
people belong to the IMSS (Mexican Institute of Social Security), or 48%
of the total national population. The IMSS is the largest decentralized
public institution in the world.
Twelve million Mexicans, or
about 10% of the total national population, are members of the Health
and Social Security Institute for State Employees (ISSSTE).
Almost 2% of Mexicans belong
to Mexican Petroleum Company (PEMEX) hospitals. Mexicans also receive
treatment in the hospitals belonging to the National Defense and Naval
Secretariats.
All these institutions provide
first-class medical attention, and people with hemophilia, mainly children,
have the opportunity to get factor VIII and factor IX concentrates.
But what happens to the rest
of the Mexicans? What happens to the almost 40 million Mexicans who do
not have access to health services in any of these institutions?
For this large number of people,
there is the Health Secretariat; through its national system of hospitals,
clinics and health centers, people with hemophilia are treated with cryoprecipitate
and plasma.
In some of the major Mexican
cities, like Guadalajara, Monterrey and Puebla, people can get treatment
at the municipal medical services. These are health centers with very
limited resources, so it is unlikely that patients will obtain factor
concentrates. Unfortunately, the lack of knowledge about hemophilia means
that patients are unable to get treated even with cryoprecipitate.
Finally, we have the Mexican
Red Cross, which is responsible for emergencies arising from accidents
or natural disasters in our country."
Now you know the reason that
I prefer to stay here, inside my mother.
It is my wish that my parents
belong to the IMSS. I wholeheartedly hope that they do everything necessary
to give me the chance to develop with equal opportunities, because—and
I want to state this loud and clear—I am no different, I am equal. My
potential is great, and I want to live. I want to give my country the
best of myself, to leave a mark, and not to pass unnoticed.
Today I learned two new words
from my Tata: gene therapy. Today I felt my mother’s heart beat with new
hope. Gene therapy.
My Tata read an article about
gene therapy. He told my mom that this is the hope for people with hemophilia.
Of the three clinical trials already initiated, only one company’s appears
to move forward: Transkaryotic Therapies, Inc.
My Tata read, “The trial has
an excellent safety record, and has produced the most impressive therapeutic
benefit yet reported in a hemophilia gene therapy trial... At least two
of the patients (both severe) have had no apparent spontaneous bleeds
for more than a year.” [“A Long and Winding Road,” PEN, Feb. 2001]
And today, my Tata and my Tati
(my maternal grandma) have great news: the Hemophilia Information Centre
has just begun operations; this is a place where information about the
hemophilia world will be available to all.
Although no one can see me, my
mother can feel me, and today, I feel very happy. Soon I will be born
to a responsible, interested and informed family. I will be loved by all.
It is very possible that when
you read this, I have already been born. Possibly I am one of those affiliated
with the IMSS, and will suffer from its limitations, although it is the
best we have. Yet I do not regret being born in Mexico. I am proud to
be Mexican, and have defined my mission in life already. The future is
not yet written. We cannot change the past. What is important is the here
and now, because only by accepting my present will I be able to create
my future.
Gene therapy, for me, is something
like reaching a star. We all want to follow a dream; we all want to live
with hope. The hope for a certain and permanent cure is like a dream.
But allow me to dream—to shelter the hope that some day, for my children
or the children of my children, the word hemophilia will be just another
vocabulary word, one that belongs to a past full of pain and unhappiness
that should never be repeated. Nicolás and Ana Rosa Rangel, Founders
and Directors
Hemophilia Information Centre, Av. Naciones Unidas # 5470 Vallarta Universidad, Zapopan, Jalisco, México, C.P. 45110
fax: 33 36 73 29 98 e-mail: nicoyana@prodigy.net.mx |
