Venezuelans with HIV make tough choices as medicine becomes scarce

IMAGE: CNS photo/Cody Weddle

By Cody Weddle

CARACAS, Venezuela (CNS) — Gloria
Gallardo, 59, and her granddaughter Diana Diaz, 14, woke before dawn for the
two-hour bus ride into Caracas. Although they had made the journey hundreds of
times before, this time felt different. They worried about the news they might
receive from Diaz’s doctors.

Normally chatty, today they
mostly remained silent, with different scenarios running through their heads.

Diaz was born with HIV and
hepatitis B and has lived with diabetes since she was 9. Several weeks earlier,
she learned her antiretroviral drug, Viraday, might become the latest medication
added to the growing list of medicines not available in the country. Further
complicating her health, Diaz had lost 11 pounds because her unemployed
grandmother could not afford to buy enough food.

In their home, pasta, rice,
bread and condiments have all been eliminated in favor of yuca, pumpkin,
plantain, and whatever other vegetables they can afford. The diet changes helped
control Diaz’ diabetes, which is good because stores did not have the medicine
to control her blood sugar.

“The doctor said if she
continued losing weight, they would take ‘measures,'” said Gallardo. “Those
‘measures’ were that they would send her to a shelter.”

Although Diaz had been given two
alternative medications in case Viraday was not available, Gallardo did not
know how that might affect her health. And neither knew what living a shelter
might entail.

The night before their trip to
Caracas, Gallardo heard that Viraday was not available in some places.

“It terrified me even more,”
she said.

During medical trips to Caracas,
the two stay at Nuestra Senora de la Esperanza (Our Lady of Hope) house, run by
the San Luis Home Foundation. The foundation offers lodging to mothers and
children with HIV who live outside of the capital and travel to the city for
medical treatment.

Giant teddy bears line the
couches in the common area; a bookshelf is full of children’s’ books; and a
large dining room can serve dozens. Mothers and their children sleep in
dorm-like rooms with bunk beds.

The foundation provides food,
transportation to and from medical appointments, and even pays for checkups in
private clinics if needed. It operates solely on private donations.

Father Jose Luis Lofrano has
managed the home since 2011.

“There was a serious problem
here, that children with HIV came to the city, they couldn’t stay, and they
would leave without their medicine,” he said.

He said he has seen how the
conditions for those with chronic conditions like HIV have, in many cases,
turned from worrisome to dire as the country endures its fourth year of an
economic crisis.

Venezuela’s economy has
collapsed in recent years, with inflation projected this year to reach 720
percent. As oil prices have dropped, the government has run out of money to
import many foods and medicines at affordable prices. Over 90 percent of the
country’s foreign revenues come from oil sales.

Many Venezuelans have cut back
on the number of meals per day. One study showed that 75 percent of people in
the country have lost an average of 19 pounds.

That means that many managing
medical conditions like HIV must worry not only about their medication, but
about putting food on the table.

“This is a vicious cycle,”
said Father Lofrano.

He explained how he has seen many
of the families his foundation helps unsuccessfully try to juggle the various
problems they face. This year he noticed some mothers living with HIV were
selling their medications to buy food.

“She may have fixed the
problem for a day, but in the long run, maybe in a few months, she will die,”
he said.

And that’s what happened.

Four women who stay at the home
with their children have died this year after stopping their HIV treatment. Two
others who had previously been enrolled in the program also have died.

Father Lofrano said those
mothers did not have much choice. They could either not feed their children or
they could sell their treatment.

“We’ve had people who
arrive at the home and faint from the hunger,” he said. “The only
good meal they had received in weeks was with us.”

He also has seen HIV-positive
mothers with infants decide to breastfeed their infants as a last resort after
not finding baby formula. Their babies contracted the virus as a result.

Organizations like the San Luis
Home Foundation that help HIV patients have struggled to keep up with the
growing need.

For decades an HIV diagnosis
meant a death sentence. But today the virus can be controlled by daily
medication, and those with proper treatment can live a relatively normal life. Stopping
treatment allows the virus to attack the body’s immune system, and those with
the condition can develop AIDS, leaving them susceptible to common infections
that can turn fatal.

Aid for AIDS founder Jesus
Aguais has sent HIV drugs to Venezuela since 1997. He warns that the situation
in the country could start to resemble that of the ’80s and ’90s, before
effective HIV medications had been developed, when many HIV patients developed
AIDS and died.

While official numbers are not
released, his group estimates that 80 percent of the 77,000 Venezuelans being
treated for HIV have not had access to their medicine for the past nine months.
Some doctors have said that figure could be around 40-50 percent.

Such people are “being
mentally tortured,” he said from his office in New York. “Knowing
that you need a medication, and the government is supposed to give to you, and
you don’t know if you’re going to get it. It’s torture.”

Numbers tracked by his group
show that 2,100 people died of HIV-related causes in 2012. This year in one
state alone, Carabobo, 1,600 people have died.

Aid for AIDS has stepped up its
fundraising efforts to help those living with HIV. This year it hopes to send
$4 million worth of medicines as well as baby formula for thousands of babies.

Aguais must find ways to sneak
those supplies into the country. The government recently revoked the group’s
permit to donate medicine. Venezuelan officials have continually denied the country
is suffering from a humanitarian crisis.

Aguais said he worries not only about HIV
patients, but also about the broader public health concerns of having a large
percentage of patients unmedicated. HIV patients who don’t take their
medication are much more likely to pass on the virus. Complicating the problem are
shortages of the kits to detect the viral load and CD4 count, which indicates
whether one has a healthy immune system.

That multitude of issues could
result in a spike of new HIV infections in the country, where the last official
figures estimated that 120,000 people could be living with the condition.
Aguais believes that number could be far higher.

“We are talking about a
catastrophe however you look at it,” he said.

For now that catastrophe has not
fully struck Gallardo and Diaz. Gallardo stared sternly at the hospital nurse
attending the window at the children’s hospital where she picked up Diaz’s

“Vidaray,” she said,
passing the prescription under the metal bars separating her from the nurse.

She sighed as the nurse turned
her back, clearly heading to the shelf to look for the medicine. They had it.

Also to their relief, Diaz had
gained back a few pounds, which Gallardo credits to the help offered at the San
Luis home. It was the only place they had been able to eat rice.

In one month, they’ll need to
look for another bottle of pills in Caracas. Gallardo will need to scrape
together enough money to buy food so her granddaughter can continue to put on
weight. Gallardo has lost 23 pounds.

At Nuestra Senora de la Esperanza,
Father Lofrano and his team will keep tabs on Gallardo and Diaz as best they

“This is our second home,”
said Diaz as she sat on the couch surrounded by teddy bears. “Here, the
doors are always open.”

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