In Russia, a new voice for patients


NOVOSIBIRSK, RUSSIA - A young patient at Children's Clinical Hospital No. 3 in Novosibirsk attends a performnce. (Will Englund/THE WASHINGTON POST)
June 24, 2011

The wrong prescription, the ridiculous diagnosis, the ill-equipped ambulance, the hospitals that wouldn’t accept him, the doctor who wouldn’t let her see him after he was dead. The treatment of her 8-month-old son Maxim, and the way he died, are why Darya Makarova decided she had to do something about the incompetence and callousness of Russian health care, to take a stand and mount a campaign.

And in a country with a million unhappy stories, hers struck a chord.

Thousands have turned out for her rallies, written letters, signed petitions or joined in Internet forums. Since Maxim’s death in November, she has raised money to reopen a children’s clinic, with an emergency room, in her community. She has shamed the city into buying three new ambulances, with proper equipment. She has launched a nonprofit organization, Health Care for Children, that has national ambitions.

Politicians have sought her out. Pavel Astakhov, who holds the newly created title of children’s ombudsman, came from Moscow to see her — and then appointed her his unpaid deputy, giving her more access and clout. Even officials from the sprawling and notoriously indifferent Health Ministry started to pay attention.

Makarova, who just turned 29, is determined to shake up the system from the outside, from the grass-roots level. That goes deeply against the grain here, where the idea of civil society gets a frosty reception at best, and where activists are more likely to get beaten up than listened to. But she’s one of a rising generation of passionate Russians who, in fields ranging from business corruption to the environment, are rejecting the passivity of their elders.

“Several thousand Russian people have come together and said, ‘Enough! It’s time to do something,’ ” she says. She hopes she can turn that into several million Russian people. “People are tired. Tired of everything.”

Russians are especially tired of the pitiful public spending on health care (about $500 per person annually), and the corruption that pervades the system. Budgets are opaque, the cost of equipment is suspiciously high, salaries are pitifully low. A new study commissioned by the Russian government suggests that health is the most corrupt field in the country.

Though medical care is supposed to be free, demoralized doctors demand under-the-table payments from their patients. Hospitals try to avoid difficult cases, like Maxim’s. They have no incentive to do otherwise.

When Makarova couldn’t awaken her son the morning of Nov. 10, her options were few. The pediatric clinic in his neighborhood had been converted into a for-profit adult treatment center. Hospitals nearby wouldn’t admit him. The ambulance that came for him, from 20 miles away, was in service despite failing its road test, and had no equipment for treating infants. The hospital that finally accepted him, and where he died two days later, was built in 1913, and was falling apart.

“I hate this country,” Makarova’s mother told her, and immigrated to England.

A middle-class movement

But Makarova had another idea. She lives in Akademgorodok, a community of scientists in the forest along the River Ob. She has degrees in geology and marketing management, and had a high-paying job at an IT firm; she and her husband, a biologist, live in a $300,000 apartment.

She used the Internet to tell her story, and middle-class people all over Russia — subjected to the rudeness, incompetence and deterioration of public health care — have responded because it seems so believable. “Anytime you deal with Russian medicine you come away with a bad feeling,” says Tatyana Antonova, a dermatologist who stopped practicing out of disgust with the system and is now one of Makarova’s top associates.

People who have never done anything political before have joined her cause. Iva Avrorina, who works in advertising, makes videos for Makarova. Getting involved has been a revelation for her. “It changes your view of the world,” she says. “You’re leading your life, with all its troubles, and then something like this happens and suddenly you’re meeting all these good people.”

In the months before he died, Maxim had been having occasional trouble breathing. One doctor said it was because he was teething. Another gave him a prescription for a drug that, Makarova later learned, is inappropriate for infants. It may have killed him.

In October she had applied for a passport for him so she could take him to Germany for treatment. But by the time it arrived he was dead.

“When he died I understood I could have done much more for my baby,” she says. “So now I do it and maybe I can help other babies. But, still, you know, children are still dying.”

Makarova has arrived on the scene just as Russia is launching a $900 million health-care modernization project. She says her organization will make sure the money is well spent, though others worry that it just opens up whole new possibilities for corruption.

“Our goal is to look at the system and see what’s wrong,” she says. “Where’s the money? Where’s our money?”

She has public opinion on her side, and her campaign has already forced local officials to steer modernization funds toward children’s hospitals. “She has the qualities of a leader,” says Andrei Andreichenko, a member of the city council. “She’s persistent. She’s confident. She’s strong.”

Recently she recruited theater companies to put on shows at eight children’s hospitals here. At the hospital where Maxim died, members of the Young Guards, a Kremlin-backed youth group, horned in on the program, uninvited. Makarova wasn’t much disturbed — she saw it as testimony to her success.

Every television station covered the event, and it was on the front page of the local paper the next day.

This is only the beginning, says Vladimir Bespalov, head doctor at a small hospital in the town of Koltsovo that has benefited from Makarova’s efforts. “In this swamp, she was able to get attention, and forced the government to spend on children. You cannot lock this movement down, because it’s coming from the soul.”

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