[Pharm-policy] Death Continues in Guatemala, But Hospice Provides Ray of Light
P. Davis
pdavis@CritPath.Org
Thu, 23 Mar 2000 13:50:21 -0500 (EST)
Forwarded message:
>From healthgap@CritPath.Org Thu Mar 23 10:20 EST 2000
Date: Thu, 23 Mar 2000 10:19:32 -0500 (EST)
Message-Id: <200003231500.JAA27745@nemesis.racsa.co.cr>
Errors-To: richard@atdn.org
Reply-To: healthgap@CritPath.Org
Originator: healthgap@critpath.org
Sender: healthgap@CritPath.Org
Precedence: bulk
From: rastern@sol.racsa.co.cr
To: Multiple recipients of list <healthgap@CritPath.Org>
Subject: Death Continues in Guatemala, But Hospice Provides Ray of Light
X-Listprocessor-Version: 6.0c -- ListProcessor by Anastasios Kotsikonas
X-Comment: Health Gloal Access Project (GAP) Coalition
Content-Type: text
Content-Length: 7214
Hospice provides Ray of Light among the Shadows For People with AIDS in
Guatemala
by Richard Stern
In Guatemala, only 15 percent of an estimated 3400 People Living with AIDS
have access to anti-retroviral medications.
Those who do not are also frequently denied access even to medications for
opportunistic infections.
The Instituto Guatemalteco de Seguro Social (IGSS) provides anti-retroviral
therapy to approximately 450 adults and 55 children who have AIDS. These
people are affiliated with the IGSS through their employers. However, most
Guatemalans work independently as agricultural workers, domestic laborers,
and in other small businesses that do not provide them with access to the
IGSS. Therefore they are covered only by the country's two large public
Hospitals. As in-patients they receive medications to treat their
opportunistic infections, but once they have left these hospitals they must
purchase their own medications. Fluconizole which costs about $8 per day in
Guatemala is far too expensive for most People with AIDS in a country where
the average worker only earns about $7 per day. Forced to choose between
food, and shelter, or medications, most cannot afford the medications. In
most cases they relapse rapidly.
The Marco Antonio Foundation, directed by Ana Lucia Estrada has attempted
to fill a need for the dozens of Guatemalans who die each month of AIDS.
The foundation opened a state of the art Hospice program in October of 1999.
The Hospice has 28 beds and is located near a bustling commercial zone in
the heart of Guatemala City.
Estrada has been the driving force behind the hospice for several years.
First she convinced the Government to rehabilitate an abandoned maternity
hospital. Then she obtained funds to remodel it.
I spent a day at the hospice with Estrada in late February. A women
patient that we visited in the morning died while we were eating lunch.
She was 34 years old, and left several children behind. Death is a fact
of life for People with AIDS in Guatemala. The woman's husband was
critically ill with AIDS in another part of the shelter, but Hospice
personnel did not tell him about his wife's death.
My Guatemalan friend Douglas Lara who works as an AIDS educator commented
"It is a shame," he says "In the U.S. these medications are readily
available, but who in Guatemala can afford to pay $800 per month? Corporate
greed and international indifference are killing the people of my country."
Still, the remodeled gleaming white air-conditioned building is like an
oasis for the patients who have suffered from inadequate medical treatment
as well discrimination and rejection in the larger Guatemalan society.
Estrada explained that her motivation for the hospice came about as a
result of seeing two close friends die of AIDS several years ago. "They
were both abandoned by their families and died terrible and lonely deaths,"
she explained to me. "I had always been interested in volunteer projects,
and I used to work for the Audobon Society . But after seeing what happened
to these people I made a vow that I would dedicate my life to preventing
this kind of death from happening to others."
Estrada is from a family with political connections and has negotiated with
Presidential aides to receive a ten year rent free lease on the remodeled
building.
Care in the Hogar Marco Antonio is not cheap by Guatemala standards. "It
costs about 1,200 Guatemalan quetzals per day ($150) per bed. Doctors
without Borders, which won the Nobel Peace Prize in 1999, has made a three
year commitment to the Hospice for $80,000 per year to pay for medical and
nursing staff. Doctors without Borders is also underwriting the cost of
medical supplies and medications necessary for opportunistic infections.
Estrada explained that the Hogar cannot provide the anti-retroviral
medications because there would, ironically, be no funding for continued
treatment once patients improved and were able to leave. Anti-retroviral
medications cost about $800 per month in Guatemala.
However, some patients have done well enough on the regime of medications
for opportunistic infections and have been able to go home, at least
temporarily. "We no longer use the word "terminal" to describe our hospice
care services." said Estrada. "Some of our first patients are now home
with their families."
Hospice staff provides extensive counseling and reach-out to family members
of patients. If a patient appears to be recovering to the extent that they
could go home, staff members make a home visit to try to educate the family
to be able to care for the patient on return.
The Hospice urgently needs donations to cover several areas in its budget
for which there is no funding.
Donated medications are also welcome.
Author's Comments: "The death that I witnessed on that day in February
was, like most AIDS deaths in Guatemala, completely unnecessary. We all
know that a few pills whose raw materials are quite affordable could have
saved her life, and kept her children from growing up without a mother, and
ultimately, as orphans. I can't imagine the psychological impact on three
children of seeing both their parents die of AIDS. Capitalism is way out
of control when it contributes to the death of innocent people. I have been
traveling around Central America working with People with AIDS for the past
six years, and I have met dozens of people who are now dead.
Most of those who sit at their desks in governmental and International
organizations receiving comfortable salaries, continue to be silent, because
there is always someone who toes would be stepped on if the truth were
told. I understand that that you are supposed to have patience and work to
make changes "through the system." This obviously doesn't work in the case
of people with AIDS. Meanwhile the pharmaceutical companies continue to
make their profits, and the only voices heard are "Act-Up." and MSF,
but MSF has many other priorities beside AIDS. Act-Up should also get a
Nobel Prize for their efforts and they should receive the International
Funding that is now going to so many organizations who continue to work
"though the system" while thousands die each day. The World's AIDS
"bureacracy" is asleep.
For more information:
Ana Lucia Estrada
Fundación Marco Antonio
Tel: 502-365-8295
502-334-5059
Fax: 502-365-8465
e-mail: fundamaco@gaute.net
Author: Richard Stern, Ph.D.
Director, Agua Buena Human Rights Association
Tel/Fax 506-234-2411
e-mail: rastern@sol.racsa.co.cr
===
+------------------------------------------------------------------------+
HEALTHGAP Mailing List healthgap@critpath.org
To unsubscribe from HEALTHGAP, send a message with a BLANK SUBJECT LINE
to listproc@critpath.org
In the body of the message state the following:
unsubscribe healthgap
IMPORTANT: If the unsubscription request fails, send a message to
healthgap-owner@critpath.org and request to be removed manually.
DO NOT SEND UNSUBSCRIBE REQUESTS TO THE LIST ITSELF.
+------------------------------------------------------------------------+