CF is a genetic disease that damages the lungs, digestive system, and other organs. Until the development in 2019 of Trikafta, a U.S.-manufactured drug that significantly improves health outcomes for people with CF, it often meant a life that was both short and difficult.

“I want a profession that sparks something in me, makes my eyes light up — but I haven’t found it just yet, the 23-year-old Yaroslava told Direct Relief in Oct. 2024. She is originally from the war-torn town of Нью-Йорк/New York in eastern Ukraine (a legacy name from the mid-1800s).

A former graphic design student, she also hopes to start a family someday. Now that she’s receiving Trikafta — that feels possible.

“Trikafta has given me the possibility to live for many more years,” said Yaroslava, who began taking the medicine in October 2023 through a CF pilot donation program led by Boston-based pharmaceutical company Vertex, Direct Relief, and three Ukrainian hospitals, including two of the country’s largest children’s hospitals. The program currently operates in 12 countries, including Ukraine, with plans to expand.

Since its approval by the U.S. Food and Drug Administration in 2019, Trikafta has been widely praised for its impact. For Yaroslava, the treatment marked a turning point in a life shaped by loss. Her older brother died of CF at age 20, and as her own weight dropped to 40 kilograms in the months leading up to her 20th birthday, the same outcome seemed inevitable.

“When you are nearing the age when your brother died, you tell yourself how much you haven’t yet done,” recalled Yaroslava, who was first diagnosed with the disease 18 years ago. However, she did not succumb to it, even as life threw other calamities at her family, including losing her father to war and leaving their home for a safer area.

Like many with CF, she experienced persistent symptoms: thick mucus that clogged her lungs and digestive tract, causing frequent infections, breathing problems, and malnutrition. She completed her studies in 2021, but work was out of reach. Even short walks or trips to the store were overwhelming. “Life was gray,” she said.

But just three days after starting Trikafta, the choking sensation began to ease. Her energy returned. She gained weight. She could walk farther and breathe easier.

She credits the doctor who introduced her to the cystic fibrosis donation program and guided her through the careful selection process.

“I love that doctor; she saved my life,” she said.

Taking CF Treatment to a New Level in Ukraine

The CF donation program is one of several rare disease donation programs developed by Direct Relief in partnership with pharmaceutical donors.

“These programs provide eligible patients access to long-term, specialized therapies for rare diseases that otherwise have no viable treatment options,” said Ellen Cho, Senior Director of Specialty Programs at Direct Relief. “Many of these diseases are difficult to diagnose due to limited awareness or lack of access to necessary diagnostic testing.”

Direct Relief’s extensive experience in managing these types of programs, including shipping temperature-sensitive and cold-chain products, has ensured the safe delivery of lifesaving treatments to healthcare facilities in Ukraine and around the world, benefiting patients in need.

Since the early 2000s, the Clinical Centre of Children’s Healthcare in Lviv has become a reputed hub for treating CF with the available resources and knowledge. “It was a very tough time, we received the most serious patients [from across Ukraine] who were at a very difficult stage, all of them children,” said Dr. Roman Kizyma, the hospital’s director.

But the team prides itself on not losing a single patient to the disease in the past six years, added Dr. Lyudmila Bober, director of the CF center. The hospital has steadily built on its reputation, culminating in the provision in 2023 of the first supplies of Trikafta through Direct Relief. “This is a fantastic program, unbelievable help for Ukraine…” said Bober. To further the hospital’s work in this area, Direct Relief has issued a $200,000 grant for the expansion of the pulmonology department to include a dedicated cystic fibrosis center.

Some 470 kilometers (270 miles) to the east is the Okhmatdyt National Specialized Children’s Hospital in Kyiv – Ukraine’s largest pediatric hospital, known nationwide as simply Okhmatdyt. On July 8, 2024, Lyubov Mazurkevich and her nine-year-old daughter Veronika, who had started taking Trikafta just four days earlier, arrived at the hospital for an appointment at the department that treats CF and many other rare diseases, such as neuromuscular disorders and congenital immunodeficiency. Moments later, the hospital was struck by a missile, resulting in two deaths and at least 16 injuries.

“We were sitting on a bench when we heard the explosion and ran,” recalled Lyubov, a nurse who lives with her family in the Kyiv suburb of Irpin.

As with many recipients of Trikafta in Ukraine, the story of Veronika’s health is intertwined with war, which early on had displaced the family to western Ukraine, complicating efforts to manage the child’s condition. When it was safe, they returned to find their home badly damaged. But it was Veronika’s illness that still overshadowed their lives.

“I cried every day, became depressed, asked myself, ‘Why is this happening?’ Then I realized that there is only one way out – to fight,” said Lyubov. That determination led to her daughter’s acceptance into the program and they haven’t looked back since. Veronika, a vivacious, gifted painter and dancer, is now busily winning competition awards while her parents count their blessings: “We now mark July 4 (the day she began taking Trikafta) as a second birthday and we will celebrate it forever,” said Lyubov.

Restored Health Puts Even War into Perspective

The Trikafta donation program at Okhmatdyt includes both young and adult patients. The dramatic improvement in the children’s health and their swift return to almost all daily life activities is a huge turning point also for the parents. Most knew for years about the existence of Trikafta from their online research, but doubted that it would reach Ukraine, at least in wartime. Even so, patient advocates in the country continued to hope that the drug would become available. The announcement of the donation program in 2023 was welcome news during an exceptionally difficult time for Ukraine.

“The parents are crying when they get the medicine for the first time. The patients don’t always understand what is happening, but the parents say, ‘It was our task to live to this day’,” said Dr. Nataliia Samonenko, the head of Okhmatdyt’s orphan diseases department.. “One mother said she slept properly for the first time in 20 years because her child wasn’t coughing up in the night,” added Yulia Ostapyshyna, another member of the orphan diseases and gene therapy team.

The patients’ treatment and return to health can greatly help families carry on in the face of what is happening in Ukraine and help temper the tragedies of war. The Rudnytskyi family, consisting of father Mykola, mother Lyudmila, and sons Bohdan, 26, Yehor, 17, and Hleb, 10, is a case in point. Both boys live with CF, while their older brother is of sound health.

Unlike many, they were fortunate to all survive the war that swept through their hometown of Berdiansk in eastern Ukraine in early 2022. But they abandoned almost everything they owned – Mykola’s agricultural canning business and their home – to escape in March, packing their car with a few bags and their dog. Now they are starting again in Lviv.

Life is challenging, but they are rebuilding. Mykola opened another small business, and since receiving Trikafta in the summer, the boys regained their weight and no longer suffer from the previous acute breathlessness. While continuing daily inhalation and other procedures, both practice sports and lead active lives. A keen boxer, Yehor said he wants to become a dentist, his little brother chiming in, “Me too!”

“People ask us, ‘How can you live on after losing so much?’ But we now see that we have a future,” said Mykola, motioning to the boys. Cupping Hleb’s fingers in hers, Lyudmila said simply: “We now understand that true happiness fits into the palm of your hand.”

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In the year since, Direct Relief has emerged as one of the largest charitable providers of personal protective gear (PPE) and critical care medications globally, having delivered more than 82 million units of PPE, 173 million defined daily doses of vital medicines, and 36 thousand pieces of diagnostic and intensive care equipment to thousands of local organizations across 100 countries, including the U.S.

The organization has also supported health care providers with more than $50 million in direct financial assistance to sustain care and expand services that include mobile and pop-up testing sites, telehealth expansion, and greater cold chain capacity.

For an overview of Direct Relief’s activities in response to the Covid-19 pandemic, please continue reading.

Financial Summary

Covid-19 Pandemic Donations

Jan. 27, 2020 – Jan. 27, 2021

Direct Relief does not accept government funding. Its work is made possible entirely through the support of companies, organizations, foundations, and individuals.

The organization recognizes that supporters who made generous contributions of funding, services, and in-kind goods amid the pandemic did so with the specific intent that their contributions fight Covid-19 and its devastating consequences. In accepting funds as part of its Covid-19 response, Direct Relief understands that these supporters deserve to know precisely how those funds have been and will be disbursed.

Direct Relief received more than 151,000 financial contributions designated for Covid-19, totaling $125.8 million.

Some of these Covid-19-designated donations also had additional restrictions from donors requiring the funds be used for a particular region or country. All designated funds have been respected, administered, and disbursed accordingly.

How Were Funds Used

Direct Relief initiated its Covid-19 response activities using general operating funds. As Direct Relief began receiving funds donated for Covid-19, it expanded its activities and spending accordingly. The situation remains dynamic, with designated funds continuing to be accepted. Direct Relief takes great care to deploy incoming funds responsibly, efficiently, and as rapidly as possible, consistent with donors’ intent.

The following offers a snapshot of the total Covid-19 donations received over the past year:

To date, Direct Relief has spent or committed a total of $83.5 million in cash (66% of the $125.8 million received) in its pandemic response — which continues at high-pace.

Of that amount, $40.8 million has been spent or committed as direct grants to organizations on the frontlines of the pandemic, $35.6 million has been spent on purchasing essential medical items not available through donation, and $7.1 million was spent to distribute all material and financial assistance provided in response to Covid-19, as described below.

Covid-19 Response

By the numbers

Jan. 27, 2020 – Jan. 27, 2021

Grant Making

Medical Aid

Protective Gear

Medical Material Support

Direct Relief has been responding to the pandemic since its earliest days, beginning with requests for help from overstretched hospitals in Wuhan, China. From there, Direct Relief’s response quickly expanded to the United States and the rest of the world.

Since Jan. 2020, the organization has provided support to more than 3,000 partner organizations fighting Covid-19 worldwide.

As of Jan. 27, 2021, that support has included more than 29,000 medical aid shipments totaling 4.9 million pounds and valued at $1.3 billion. Medical aid has reached organizations in 55 U.S. states and territories and 100 countries.

Material support has taken several distinct forms:

• Supplies to protect frontline health workers: Direct Relief provided masks, gloves, gowns, powered air-purifying respirators, face shields, and other PPE to health care organizations globally.
• Medical resources for intensive care: As the pandemic strained hospital resources, the organization provided ventilators, oxygen concentrators, and ICU medications to help overstretched hospitals treat patients with critical cases of Covid-19.
• Ongoing support for chronic health: To minimize interruptions to essential health services, including primary and specialty care, maternal and child health services, mental health treatment, and substance use disorder interventions, Direct Relief provided a wide range of support — chronic health medications, the overdose-reversing medication naloxone, midwife kits, and more.

Direct Relief arranged for and managed the logistics, transport, and delivery of all products to health facilities – free-of-charge.

Direct Financial Assistance

Throughout the Covid-19 pandemic, designated contributions have allowed Direct Relief to bolster the health care system with financial assistance and support the efforts of locally run organizations with strong ties to their communities.

Thanks to corporate and individual donors’ generosity, Direct Relief has granted more than $53 million in cash worldwide since Jan. 27, 2020.

Grant recipients include health centers, clinics, and locally run organizations providing vital care, testing, and other health care services during the pandemic. These grants helped sustain strained health facilities, keep patients out of hospitals, maintain continuity of care, and fund Covid-19 testing and vaccinations.

For a list of health care facilities and organizations worldwide that have received direct funding from Direct Relief in response to the Covid-19 pandemic, click here.

Covid-19 Response

By Region

United States

• Grants Disbursed: $48.6 million
• Material Aid Provided: $284.3 million
  • Shipments: 28.8 thousand
  • PPE: 21.3 million units
  • Medications: 48.6 million Defined Daily Doses
  • ICU Kits: 178
  • Ventilators & oxygen concentrators: 1,046

Americas

• Grants Disbursed: $405 thousand
• Material Aid Provided: $341 million
  • Shipments: 260
  • PPE: 8.2 million units
  • Medications: 61.1 million Defined Daily Doses
  • ICU Kits: 84
  • Ventilators & oxygen concentrators: 1,497 units

Asia

• Grants Disbursed: $1.3 million
• Material Aid Provided: $169.6 million
  • Shipments: 234
  • PPE: 4.1 million units
  • Medications: 15.6 million defined daily doses
  • ICU Kits: 58
  • Ventilators & oxygen concentrators: 420 units

Africa

• Grants Disbursed: $1.26 million
• Material Aid Provided: $489 million
  • Shipments: 234
  • PPE: 42.4 million units
  • Medications: 27.9 million defined daily doses
  • ICU kits: 73
  • Ventilators & oxygen concentrators: 326

Europe

• Grants Disbursed: $503 thousand
• Material Aid Provided: $33.1 million
  • Shipments: 50
  • PPE: 1.4 million units
  • Medications: 1.5 million defined daily doses
  • ICU kits: 4
  • Ventilators & oxygen concentrators: 524

Applied Research and Analytics

Even before the pandemic, Direct Relief had facilitated emergency managers’ use of population movement and other data for decision-making purposes, including in Texas, California, and Michigan.

When Covid-19 hit, it was immediately apparent that this kind of data would be an essential tool for analyzing social distancing effectiveness.

In March of 2020, Direct Relief, with researchers at the Harvard School of Public Health, established the Covid-19 Mobility Data Network. The network, comprised of a group of about 70 infectious disease epidemiologists and other researchers, began creating simple, usable data projects to help public health officials and policymakers understand the impacts of social distancing measures in a given area.

Officials have used the group’s research and information tools in the UK, Spain, Italy, India, Australia, Botswana, Chile, and other countries. The data used for these analyses is hosted on the UN’s Humanitarian Data Exchange, allowing governments worldwide to receive support or analyze the data themselves.

While the Covid-19 Mobility Data Network was convened because of an emergency, Direct Relief and the researchers wanted to ensure that similar data would be readily available in a clear and actionable form and on an ongoing basis for future crises, including wildfires and hurricanes.

CrisisReady, working with the World Bank, is in the initial stages of creating a global emergency response network, which will launch in March-April of 2021.

In addition, Direct Relief is funding two researchers whose essential work combines population movement data and health crisis analysis: Pamela Martinez at the University of Illinois and Amy Wesolowski at Johns Hopkins University.

Among the resources developed by Direct Relief to inform and track its pandemic response are the following:

• The Covid-19 International Vulnerability Index examines population movement data and information about case counts, hospital beds, and other vulnerability indicators to generate actionable information and analysis.
• The United States forecast map draws on anonymized data to predict the spread of Covid-19.
• The United States pandemic response tracker shows Direct Relief’s distribution of medical aid across the country.
• The international pandemic response tracker shows the organization’s global distribution.

Looking forward

The remaining funds designated for the pandemic will enable Direct Relief to continue its worldwide response, focusing on:

1. Supporting vaccination efforts

• Expanding cold-chain storage and transport at hospitals and health centers and providing coolers for mobile vaccination campaigns.
• Providing needles and syringes to administer vaccines.
• Supplying PPE to health workers giving vaccinations.
• Funding education, awareness, and outreach campaigns at health centers and hospitals, particularly in poor communities and communities of color.
• Employing digital tools and artificial intelligence to determine low vaccine uptake areas and provide that information to policymakers and public health officials.
• Funding health centers that experience reimbursement gaps after administering vaccines.
• Increasing Direct Relief’s internal capabilities to receive, store, and distribute the vaccine.
• Supporting the opening of large-scale vaccination sites with funding and supplies.
• Providing back-up power sources to health care sites at risk of power loss, which can destroy vaccines.

2. Addressing Covid-19 gaps in hardest-hit areas

• Funding health initiatives in primarily minority communities hit disproportionately hard by the pandemic.
• Providing grants to health care providers in the United States and around the world struggling to care for patients affected by Covid-19.
• Continuing to provide critical care medications, oxygen concentrators, and ventilators to hospitals worldwide caring for Covid-19 patients.
• Supplying PPE to providers unable to access these lifesaving supplies reliably.
• Establishing and funding Covid-19 treatment and isolation wards ensures that low-resource areas have the resources to care for Covid-19 patients safely.
• Providing health care support for Covid-19 patients to recover at home, freeing hospital beds for more critical cases.

3. Continuing support for people with other health care needs:

• While global health resources are diverted towards preventing and treating Covid-19, fundamental health care needs continue.
• Babies continue to be born. The number of people with chronic conditions like diabetes and cancer is only growing. And children with diabetes, hemophilia, and rare diseases still need lifesaving therapies.
• As the pandemic continues, Direct Relief will continue to provide the essential medical aid required for their care.

Thank You

Direct Relief’s extensive ability to provide a wide range of medical aid, from PPE to medications intended for critical cases of Covid-19, would not have been possible without in-kind and financial donations from dozens of pharmaceutical and medical supply companies, with air transport and logistical services provided by FedEx.

Many of these organizations work closely with Direct Relief on an ongoing basis to fund and supply humanitarian projects and programs. However, the outpouring of support from corporate partners, both new and ongoing, has been unprecedented during the Covid-19 pandemic. Direct Relief is deeply grateful for their generosity and commitment.

Included among them are:

The post Covid-19 Relief: One-Year Report on Use of Funds and Response Activity appeared first on Direct Relief.