‘I want people to be able to live with dignity’

Russia's only organization dedicated to helping ALS patients is in crisis. Meduza spoke to its director.

In late May, Natalia Lugovaya, the general director of the Live Now Foundation, which provides support to people with ALS and other neuromuscular disorders, announced that the organization was in a crisis: staff members are being laid off, new patient admission has been curtailed, and a number of obstacles threaten the foundation's ability to keep working. Meduza spoke with Natalia Lugovaya about how she and her colleagues are dealing with the challenges.

In 2018, Natalia Lugovaya began working at the Live Now Foundation, an organization for people with ALS (amyotrophic lateral sclerosis). ALS is an incurable nervous system disease that gradually causes patients to lose the ability to move, to swallow, and eventually to breathe. There are currently 12,000-15,000 people living with the disease in Russia, and because that number is so small, it can be difficult to find support. That’s why patients themselves founded Live Now in 2015, and it’s why Lugovaya, as the organization’s general director, has to wear a number of different hats as she works to support patients.

One of the first things Lugovaya noticed when she came on board was that the lack of available care for ALS patients went deeper than a funding shortage; many of the specialists required to treat the disease — for example, pulmonologists, neurologists, dietologists, speech therapists, and psychologists — didn’t have the skills or knowledge necessary to help ALS patients at all. So Lugovaya began organizing training sessions.

“[Our medical director] told me, ‘Natalia, doctors are awful snobs — they think they’re the smartest people in the world. There’s not a single doctor who will willingly go to some little foundation for training.’ But there’s no point in saying that kind of thing to me [because I won’t listen]. And now, we’re seeing more and more doctors who actually want to work with ALS patients. They’re interested — they really care about helping these people,” she told Meduza.

But Live Now’s bread and butter is providing direct assistance to patients. That begins with a series of questionnaires and medical tests. Even that early in the process, though, Lugovaya’s team often has to get creative.

“In rural areas, [lung capacity] can only be measured in clinics, where [the patient] can’t go, because they [often] live on the fifth story of a building with no elevator and there’s no way for them to get down. In that case, our foundation will send the patient a lung capacity measuring device, which can also measure their blood oxygen level. Then the patient sends it back to us, we interpret the data, and we get a better idea of the situation.”

Another routine part of the job is making sure patients and their families understand their prognosis. For example, any ALS patient who lives long enough will be faced with an excruciating decision: whether to have a gastronomy tube placed. Lugovaya always advises patients to do it, but some patients initially don't want to.

“In those cases, we explain: ‘You’re going to stop eating soon — you won’t even be able to swallow water. It won’t kill you in a single day; it will last some time. And your family will have to call the ambulance to come put in a nasogastric tube. And that's not a pleasant process, to put it lightly. It’s difficult and painful.’”

A perfect storm

In recent months, Lugovaya’s job has become even more difficult. A number of factors, including Russia’s war against Ukraine, have coalesced to bring Live Now to a crisis point.

In December, Think Now had its website redesigned. At some point, the developers made a mistake with the payment processing plugin the site used, and the organization stopped receiving donations. Resolving the issue ultimately took two and a half months and cost the organization tens of thousands of dollars. Meanwhile, a number of large companies that had partnerships with Think Now paused their monthly donations.

“They all gave us the same explanation: their budgets had been suspended, or their budgets were under review,” said Lugovaya. By May, the organization found themselves unable to pay even their own employees.

Lugovaya hasn’t lost hope, but she said Live Now will have to be dramatically restructured if it wants to survive. The organization has never earned a profit, always relying primarily on donations and government-provided medical equipment. But with the sudden dropoff in donations, state money won’t be enough.

“The government designates a certain amount of money for medical institutions to train their specialists to do the procedures we focus on,” she told Meduza. “But when you hear the rates they’re offering free institutions, it’s unbelievable. For example, sometimes people call and say, ‘Would one of your experts be able to speak at an event online?’ ‘Sure — will there be an honorarium?’ I ask. ‘Yes — 700 rubles [$11].’ [...] Because that’s the government rate. How to continue training doctors while also handling the financial side is the million dollar question we’re trying to answer right now.”

Lugovaya believes it’s still too early to tell whether the war will have an effect on how much government funding gets allocated for the specific work she and her colleagues do, and that they probably won’t have much of an idea until the fall, when officials start working on next year’s budget.

On the market side, she said, while prices are rising, there’s no reason to panic yet, though the future is extremely uncertain.

“We haven’t seen any acute problems that indicate we’ll be left without masks, equipment, or anything else. But you can’t rule out that possibility. [...] 90 percent of the equipment and medications we use are supplied by foreign companies, and it’s an open question whether they’ll change their minds about working with us,” she said.

A new approach

Several months ago, Natalia Lugovaya made an announcement that sparked pushback among patients. Rather than just receiving support and leaving the fundraising to Live Now’s employees, patients would now be required to play an active role in the donor outreach process. In addition to submitting appeals to various medical organizations and government agencies for equipment, they were to engage daily with Live Now’s social media posts or risk losing the organization’s support.

Many patients were resistant to the change, and several opted to leave the organization altogether. But in reality, Lugovaya said, the new policy was a return to Live Now’s roots.

“It’s not like some rich person came along and said, ‘Hmm, let’s help some people.’ The patients themselves did the paperwork, found the doctors, and raised awareness [at first]. But now that the foundation has grown, most of our patients come to us not because they want to add their efforts to ours and help solve problems [but because they need help]. They come with outstretched hands — and they often have the attitude that we owe them something.”

Lugovaya believes one reason for the patients’ initial reluctance to play a more active role in Live Now’s work might be their Soviet upbringing; most of the patients are elderly, and many “believe the government owes them everything,” she told Meduza. But an equally strong factor might be the shame they feel at their diagnosis.

“People are ashamed to admit they have a disease; they’re often afraid to talk about it even to their loved ones,” said Lugovaya. “They have this fear that people will judge them or pity them.”

Given the current financial circumstances, though, patients’ social circles are a resource Lugovaya can’t afford not to tap.

“[Patients] have relatives, friends, colleagues, and neighbors. And if you imagine a perfect world in which at least a thousand people start liking, commenting, and reacting to every post on every social network, they’ll begin reaching a lot more people. And then the foundation won’t have to pay for advertisements and promotional posts,” she said.

And in the months since Lugovaya first explained the patients’ new responsibilities to them, many of them have come around. If anyone complains in the patients’ chat group, she said, other patients come to her defense: “‘Are you really going to blame Natasha for asking us to like social media posts? Why do you think Natasha would need that, if not to help you?’ [one patient told another].”

Lugovaya said she’s never been one to leave a job unfinished, and she intends to rise to the challenge this time, too. She ultimately hopes to see a comprehensive reform of Russian healthcare.

“Ideally, I want us to work under the same conditions as our foreign colleagues,” she said. “That means we need to rebuild our country’s healthcare system, set it up to be able to work with even a diagnosis as complex as ALS, and implement telemedicine so that anyone, even in the most run-down village, can receive all of the medical, psychological, and social support they need to live a dignified life, without humiliation or suffering.”

Interview by Darya Sarkisyan

Abridged translation by Sam Breazeale