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Collateral damage: Russian charities for the seriously ill on the brink of collapse due to war and sanctions

Sanctions imposed on banks, major market players leaving Russia, soaring prices for medication and equipment, logistics issues – all of these factors have amounted to a full-blown disaster for Russian charities helping seriously ill patients. As the foundations continue their uphill battle for survival, many admit that the situation is dire.

ALL CARDS
  • A plunge in donations

  • Withdrawal of major sponsors

  • Medication and equipment costs have skyrocketed

  • Shortages of drugs and nutrition formulas

  • Logistics in tatters

  • NGO clients will still be receiving support

A plunge in donations

Regular donations are the backbone of a charity's operations. They ensure stable support for its clients a month or a year into the future. At the moment, large foundations have registered a drastic decrease in subscription payments, brought about by the restrictions imposed on banks and bank cards and the withdrawal of Apple Pay, Google Pay, and PayPal from the Russian market.

In just a few weeks, the VERA Hospice Charity Fund has lost 947 monthly subscriptions amounting to 896,000 rubles, which means over 10 million rubles (~$121,000) a year. This money would buy six hospital beds or cover nutritional support for 12 children with severe conditions.

The Podari Zhizn Foundation fell 1,500 subscriptions short in March: 1.5 million rubles less a month, 18 million rubles (~$218,000) a year. According to CEO Ekaterina Shergova, the reasons were mostly technical: 80% of subscriptions ended up canceled because they had been set up through Apple Pay and Google Pay.

“Another 300 users canceled their subscriptions manually, which is twice the monthly average. In addition, the foundation had to disable all monthly subscriptions via PayPal to the total amount of around 400,000 rubles (~$4800) a month after the service withdrew from Russia.”

The Zhivi Seychas Foundation, which helps patients suffering from amyotrophic lateral sclerosis (ALS), has lost 50% of its monthly private donations – around 1 million rubles (~$12,000) a month, says CEO Natalia Lugovaya.

“We have observed a lot of interruptions with subscriptions linked to Russian bank cards. Systemic errors occur with one-time payments as well as automatic withdrawals of regular payments. Hopefully, it’ll get fixed before long. We stopped receiving any foreign assistance at all.”

Regional NGOs are faring somewhat better, with the majority of their donors being local. Thus, the Dedmorozim Foundation, which offers assistance to orphans and seriously ill children of the Perm Territory, is yet to lose any subscribers. According to Inna Babina, head of the foundation’s fund-raising and PR team, very few of their donors chose Apple Pay or Google Pay as the payment method.

“We hardly ever receive transfers from foreign bank cards, so we haven't lost any subscriptions. However, our donors have been facing more issues with transactions: with a monthly average of 35-40 transaction errors, our regular donors encountered almost 150 in March.”

Withdrawal of major sponsors

According to Ekaterina Shergova, CEO of Podari Zhizn, almost none of the companies that have suspended their operations in Russia can guarantee further support for the foundation, which has resulted in a shortage of 80 million rubles.

Ekaterina Bartosh, CEO of Konstantin Khabenskiy’s Charity Foundation, remarks that both individuals and businesses are only starting to adapt to the new reality.

“We are grateful to our partners for keeping up their end of the bargain with most of our projects and events that were scheduled for March. We are aware, however, of the need to adjust our further plans.”

NGO employees already notice worrying trends, as companies are cutting their budgets for charitable work, corporate social responsibility programs, and marketing. This could affect the amount of assistance in the next few months. Charities expect to finalize their lists of remaining major donors in the fall.

Meanwhile, their current financial losses are as painful as ever, with spiking prices for everything, from drugs to wheelchairs.

Medication and equipment costs have skyrocketed

For seriously ill patients in Russia, the quality of life depends on foreign drugs and imported equipment. As the ruble plunged, the prices for all items spiked. As Inna Babina of the Dedmorozim Foundation explains, whereas a children's stairlift cost around 120,000 rubles, the current price is around 170,000 rubles. “We also buy special nutrition, rare formulas that the state does not provide for varied reasons. The price per can has grown by about 30%. One patient needs several cans a month, which leads to considerably higher expenses.” And the price growth has nowhere near stopped.

The Lighthouse Charity Foundation, which provides support for 800 families with terminally ill children, has also observed an increase in costs. Among other items, respiratory equipment has become considerably more expensive, with portable oxygen concentrators going up by 62%, their stationary analogs by 50%, and concentrator masks by 54%. Prices for medical consumables and disposables are also soaring, but they are indispensable to the appropriate functioning of equipment. Lighthouse is trying to accumulate a yearly stock of medical supplies so that its charges can continue using the available aspirators and oxygen concentrators.

Portable oxygen concentrators have gone up by 62%, and stationary ones by 50%

Many foundations managed to procure the necessary equipment in the first weeks of the crisis. Thus, the Zhivi Seychas Foundation purchased enough medical supplies for a few months of ALS care, and Dedmorozim prioritized obtaining equipment for children with incurable conditions.

Early in March, Podari Zhizn also restocked disposables, foreign equipment, and drugs that aren't registered domestically. Due to the urgency and the abysmal currency rate, the foundation had to spend a lot more money than anticipated.

Many pharmaceutical suppliers have agreed to offer pre-crisis prices, says Podari Zhizn CEO Ekaterina Shergova: “For instance, we got the supplier of anticancer drug Сosmegen [Dactinomycin] to lock in the old price for the batch already booked for our clients. The prices for foreign drugs that are registered in Russia and that the suppliers already had in stock remained the same for us.”

Shortages of drugs and nutrition formulas

Some foreign drugs became impossible to buy. For instance, many antiepileptic drugs (AEDs) have disappeared, according to the press service of the Lighthouse Charity Foundation

“Such AEDs as Depakine [valproic acid], Fycompa, Zonegran, Finlepsin [carbamazepine], and the anti-seizure drug Keppra are no longer available for wholesale orders. The same goes for most foreign antidepressants. Some forms of the most basic painkillers have disappeared too, including the Nurofen syrup, which is the only form suitable for children with a PEG tube. We can no longer purchase anti-fungal antibiotic Pimafucin [natamycin], TauroLock, which is necessary for patients with a central venous catheter, the Solkoseryl Jelly for use on wounds, or the Vitalipid emulsion, which contains indispensable fatty acids.”

Doctors will try to adjust their patients’ medication accordingly but any changes to the therapy take a heavy toll on seriously ill individuals, causing side effects and depression.

Apart from customary medicines, the Lighthouse Charity Foundation may lose access to the necessary medical equipment, which is manufactured abroad:

“Suppliers have suspended shipments of Soluvit, a multivitamin intravenous nutritional supplement, Vitalipid, a vitamin mixture for children, the Addamel N special solution for IV solutions, the Ionosteril IV solution, and the Kabiven Central IV emulsion until the second quarter of 2022. Moreover, Russia is no longer importing the SMOFlipid emulsion or Aminoven.”

Meanwhile, nutritional support from the Russian manufacturer InfaPrim has gone up by 22%. The foundation is doing its best to buy at least a six-month supply of formulas. Lighthouse has also launched an urgent campaign to raise funds for crucial drugs and equipment that are disappearing from the market.

Logistics in tatters

The collapsing logistics has delivered a blow to charities as well. It takes a lot of time and effort to invent new ways of shipping drugs and equipment. Complex delivery chains are also driving up expenses, which is burdensome for charities that have lost so many donations, points out Ekaterina Shergova of Podari Zhizn.

“To bring bone marrow from foreign registries for children who need a transplant, our ‘courier’ has to meet their counterpart from the German bone marrow registry in Istanbul, where few airlines can get you these days. For instance, Aeroflot is no longer available, which is a shame because we could purchase its tickets with ‘Mercy Miles’.”

Some charities are adjusting their equipment delivery plans. As Ekaterina Bartosh shares, Konstantin Khabenskiy’s Charity Foundation has suspended some of its procurement contracts until they have figured out further logistics. Shipment costs will increase, and apparently, the foundation will have to seek additional funds.

NGO clients will still be receiving support

Inna Babina of Dedmorozim highlights that the charity is still helping its clients:

“In the very beginning, we were receiving many calls and letters asking: ‘Will you continue to support us?’ We aren't giving up on anyone. In contrast, we realize that our support is even more relevant in an economic crisis. So we’ll keep looking for ways to provide it.”

Natalia Lugovaya, CEO of ALS care foundation Zhivi Seychas, informs that her and many other charities are accepting new requests despite the financial struggle:

“Whereas we welcomed 60-70 new families in 2019, the current influx is 50-55 families a month. ALS care service coordinators handle every case individually and explain to our clients what assistance they can receive from public healthcare and what support is provided exclusively by the foundation. The workload on our staff is immense, but ALS patients can't get such a consultation elsewhere. So we can't suspend our activities despite getting fewer donations. That said, if the spike in requests doesn't flatten out soon or if we don't start raising more funds, the foundation will find itself in a dire situation.”

None of the foundations we interviewed has reduced the amount of support. On the contrary, they are doing all they can to prevent financial and logistic challenges from affecting their clients. Many acknowledge the need to review their plans for 2022 and give up awareness-raising campaigns or systemic projects in favor of targeted support. Nevertheless, most show the same commitment as Ekaterina Bartosh of Konstantin Khabenskiy's Charity Foundation: “We’ll keep doing everything within our power for as long as we can.”

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