Chronically ill teen juggles needs to survive in Venezuela

Grandmother helps her find drugs for HIV, Hepatitis B and diabetes

By Cody Weddle, Andrea Torres - Digital Reporter/Producer

CARACAS, Venezuela - About three years after Diana was born with HIV and Hepatitis B, the late Venezuelan President Hugo Chavez was looking to increase the domestic pharmaceutical production sector. 

He approved the construction of a pharmaceutical industrial complex in Guacara. The center was supposed to produce antibiotics, antiretrovirals and insulin. The raw materials were coming from India, Sweden, Germany and China. 

It was a solution for an oil-rich country dependent on imports. Chavez envisioned pharmaceutical drugs would be sold at subsidized or production cost prices. They would only be sold to Venezuelans and to the countries belonging to the leftist trade bloc. 

"We are going to convert ourselves into exporters of medicines in the future," Chavez said. "First, of course, for us, and later to share with other countries." 

Unfortunately for Diana, now a 14-year-old student, his unsustainable system of spending came to an end. The weak intellectual property regime discouraged multinational investment, crushed all incentives for the private sector, and the deep economic recession forced spending cuts. With unpaid debts, foreign drug manufacturers cut off commercial ties.

For years, Diana's grandmother and mother have struggled to find all of the medications that she needs. The plunge in oil prices, a currency free fall and a triple-digit inflation worsened conditions. The health ministry hasn't been able to stop the debilitation of the country's health system. 

President Nicolas Maduro, Chavez's successor since 2013, faced the calamitous suffering of the chronically ill with public denial. Despite the wretched condition of hospitals and clinics, he also imposed a ban on humanitarian aid that even applies to the Roman Catholic Church's charity arm. 

Last year, Venezuela settled debts with at least three global drug companies with bonds that trade at a heavy discount, Reuters reported. The Venezuelan Society of Infectious Diseases, or SVI, has warned the lives of HIV patients like Diana are in danger.

When customs officials look the other way, dubious courier services allow some non-profit organizations in South Florida to continue their under-the-radar work by delivering small packages with omitted information. 

Diana and other HIV patients need anti-retrovirals to keep the HIV virus from turning into full-blown AIDS, a disease that destroys the immune system. According to SVI there is a shortage of antiretroviral medications --  atazanavir, raltegravir, ritonavir, nevirapine, efavirenz, rilpivirine, tenofovir, emtricitabine and abacavir. 

In an open letter, a desperate network of Venezuelans asked the Switzerland-based Global Fund to Fight AIDS, Tuberculosis and Malaria for help. The organization denied the request earlier this year because The World Bank classifies Venezuela as a high-income nation.  

Meanwhile, Diana was diagnosed with diabetes. She lost 8 pounds this month. Food shortages make it difficult for her grandmother and mother to provide her with adequate nutrition, and they haven't been able to find insulin for three months. The reactive strips to measure her blood sugar are also not easily available. 

"This crisis is tough," her maternal grandmother, Glorida Gallardo said. 

Gallardo said she worries about Diana all of the time. They can't afford the staggering prices of the black market. It's also risky. Blood-pressure drugs to avoid strokes and analgesics are often sold without a box. Over-the-counter painkillers or critically needed antibiotics to fight infections come without an expiration date. 

Like most chronically ill patients in Venezuela's rural areas, Diana and Gallardo have to travel far to get medical attention when their health deteriorates. Diana's hard-to-find medicines means the journey could take several days.

They are among the Venezuelans who have grown to depend on the help of nongovernmental organizations. They spend the night at he Fundación Hogar San Luis when they travel to Caracas. The regular journeys to try to find her medications take time. 

Rev. Jose Luis Lofrano founded the Fundación Hogar San Luis, which relies on donations, to help patients with HIV in Caracas' San Bernardino neighborhood. He worries about Diana and her diet. He said sometimes patients will sell their medication on the black market to get money to eat. 

"We have even seen mothers who have fainted because of hunger," Lofrano said. "The only food they have had was from our home."

During a recent trip, Diana and Gallardo were able to find her anti-retrovirals to keep her from developing AIDS.  But she still has two other potentially deadly diseases to deal with. 

Copyright 2017 by WPLG The Associated Press contributed to this report. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.