Crisis in Ukraine
07.20.14 9:45 AM ET
‘There Are People Who Should Live’: Good Confronts Evil in Ukraine
Evil in the form of a missile streaked 30,000 feet over Ukraine to bring down Malaysia Airlines Flight 17, killing 80 children along with at least a half dozen AIDS researchers bound for a conference in Australia.
But the bodies and debris rained down on a strife-torn county that is also home to Good as personified by a group of patient advocates who have used the power of children to secure a government guarantee that everyone with HIV in Ukraine will receive anti-viral medication.
As it happens, the executive director of Patients of Ukraine, Olga Stefanyshina, flew in the same hazardous airspace the day before the attack on Flight ML17 on her way to the same AIDS conference.
“Kiev-Dubai-Perth-Melbourne,” the 31-year-old mother of two reported of her route on Emirates airline.
Stefanyshina and a colleague, Inna Boyko, made the journey to give a series of presentations describing the group’s achievements. Stefanyshina learned from Facebook of the Flight 17 horror in eastern Ukraine. The whole conference was stunned by the loss of at least six prominent AIDS experts.
“People are now asking me, ‘How did you manage to work in those circumstances that are now happening in Ukraine?’” Stefanyshina says.
Her reply to such questions: “We live in this reality.”
She learned that among the dead aboard Flight 17 was the eminent researcher Joep M. Lange, who had been at the forefront of the fight against AIDS since the early days of the epidemic.
“Personally I, to my great pity, have never met him,” she said on Friday.
Lange was revered in the AIDS community as a scientist whose pioneering research led him from the laboratory to the field, where he led equally pioneering efforts to provide medication to impoverished regions of Africa. He no doubt would have been delighted to hear of the Ukrainian group’s successes in its home country.
Three years ago, the fledgling Patients of Ukraine joined with another non-profit in getting children with HIV to sign postcards to their government reading simply “Let me live!” The last of 500 cards were ceremoniously signed at a press conference and then presented with the others to the authorities.
What can only be described as the power of children persuaded the government to announce that henceforth it would be providing antiviral medication for all Ukrainians with HIV.
“Little life givers,” the kids were rightly called by Patients of Ukraine.
There remained the problem of graft takers, a blight so pervasive that half a patient’s medical care costs were bribes just to see a doctor. And the medications were sold to the government at huge mark-ups that drained the health care budget.
A Patients of Ukraine report concerning the government supervised bidding for the medications suggested that in the view of the Ministry of Health, the primary purpose of the program was not to assist those with HIV but “to do everything to help honorable Ministers and their immediate subordinates earn their villas, cars, and education of their children in the best universities of the world, of course abroad.”
The report allowed that bribery and skimming are endemic in Ukraine, but maintained that the consequences are far more serious when it comes to a deadly disease.
“Corruption is present in pure form everywhere in Ukraine — from the moment of placing a child in kindergarten to get a spot at the cemetery, and [we] have become used to this, as to the snow in early April — unpleasant but inevitable,” the report says. “For the terminally ill Ukrainians, corruption in medicine is death.”
Patients of Ukraine learned that there was not a penny in the budget to treat those with Hepatitis C, woeful negligence that compounded itself because untreated sufferers spread the disease.
The group joined with several other organizations to assemble 100 patients with white pillowcases over their heads and nooses around their necks as if they were awaiting the death penalty. The government agreed to provide medication for everyone suffering from this disease as well.
“We also mobilized the patients for that to happen,” Stefanyshina said, who worked five years in a home for people with HIV before she joined the group. “The patient is our power.”
In January of last year, the mother of an 18-month-old child suffering from cystic fibrosis sought the group’s help. Patients of Ukraine successfully campaigned to get the appropriate medication for sufferers of this condition, noting that only ten percent of sufferers in Ukraine live to 18, while the average life span for sufferer in Europe is 43 years.
All told, Stefanyshina figures that thousands of deaths from various diseases and conditions in Ukraine each year could be prevented by adequate health care. Lange would surely be the first to agree with the group that his death and the deaths of the 297 others aboard Flight 17, along with the many more deaths in the ongoing conflict, should not lead us to forget those who perish due to inadequate medical care. A person who is sick is just as sick in war as in peace.
“We understand there is a war on,” Stefanyshina said. “On the other hand, there are also people who are dying without treatment.”
She added, “There are people who should live. That’s why we should continue our work and do what we do.”
The conference had already scheduled a candlelight vigil for those who died of AIDS. It will now include Lange and the other colleagues who perished on Flight 17.
Lange’s spirit will live on in the AIDS researchers and activists who return to their labors after the conference. They will prominently include the people with Patients of Ukraine, who are as heartsick as anyone over the victims of the violence but who also keep in mind the many more who die as a result of poor medical care.
But Stefanyshina and Boyko will not be returning to Kiev on the airline they flew through that hazardous airspace to Melbourne.
“It seems they stopped their flights over Ukraine,” Stefanyshina said. “So I don't know how we will get back home.”