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0416 Patient Groups
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Politics, Policy & Law

Pandemic pain: how COVID-19 has devastated patient groups

Patient groups that are an essential part of the life sciences ecosystem are suffering from increased demands and decreased funding

Patient groups that are an essential part of the life sciences ecosystem are suffering from increased demands and decreased funding.

Apr 16, 2021 | 11:53 PM GMT

COVID-19 has devastated patient groups that prior to spring 2020 relied heavily on in-person events to raise funds, build communities and promote awareness. The cutbacks have set back scientific research, harmed vulnerable patients and undermined organizations that have over the last two decades become catalysts for biomedical progress.

Unlike closures of stores and restaurants or massive layoffs in the hospitality industry, the effects of the pandemic on non-profits aren’t advertised by empty storefronts or spikes in unemployment figures. Lack of visibility may make recovery more difficult, as pandemic relief is directed to organizations and individuals with the most obvious needs.

If they look, governments and donors will see that the pandemic has hit small- and medium-sized patient groups like a tornado, leaving some organizations relatively untouched amidst a trail of fiscal destruction. It will take years for many to rebuild in the post-pandemic era.

The biopharma industry is taking some steps to support patient groups, including establishing a new grant-making program backed by BIO to help the smallest organizations, but the needs far outstrip additional funding.

A few examples illustrate the depth of the problem.

The Canadian Spinal Research Organization’s revenues have declined 70% over the last year. The funds support research to maximize functional recovery and cure paralysis caused by spinal cord injury.

Parent Project Muscular Dystrophy, which operates primarily in the U.S., has been forced to slash its budget by 25%. PPMD has pioneered initiatives that integrate the perspectives of patients and their families into drug development and regulation, and has funded research that has jump-started commercial and academic drug development initiatives.

Funding cutbacks caused Anthony Nolan, a U.K. charity focused on blood cancers, to facilitate 15% fewer stem cell transplants during the pandemic year than in the previous year.

The fund-raising downturn is global, and it is affecting organizations that provide patient services, fund research and conduct advocacy. Charities that fund about half of the medical research in the U.K. experienced a 38% decrease in fund-raising income in March-May 2020 compared to the same period in 2019, according to the Association of Medical Research Charities (AMRC).

AMRC reported in June 2020 that medical research charities had furloughed 34% of their staff.

In January 2021, AMRC launched a campaign to persuade the U.K. government to step in with additional funding for medical research charities.

Without increased government support, fund-raising cuts “will prevent charities from funding new clinical trials, meaning thousands of patients will be unable to access life-changing treatments,” the organization stated. “Many research projects will be paused or cancelled, delaying medical advances that are crucial to saving and improving countless lives. Thousands of scientists will lose their jobs and likely leave research, reducing the UK’s capacity to tackle big health challenges like COVID-19.”

Patient groups have been caught in a funding downspin that is hurting the entire non-profit sector.

The U.S. Bureau of Labor Statistics reported that the pre-pandemic nonprofit workforce of 12.3 million employees lost 930,000 jobs in 2020.

In a March 2021 letter to President Joe Biden and congressional leaders, a group of non-profits warned that “nonprofit revenues are likely to decline sharply in 2021 as individuals are less able to make charitable donations and state and local governments make draconian spending cuts to human services and other programs frequently performed by charitable nonprofits.”

The letter urges policymakers to establish dedicated programs to help the non-profit sector, including grants, forgivable loans and refundable tax credits, and to create incentives for charitable giving.

While revenues of many patient groups around the world have fallen sharply, demand for their services has increased as their constituents have experienced difficulties accessing healthcare and suffered job and income losses, and in many cases researchers who are the best hopes for medical breakthroughs have lost funding.

The pain hasn’t been evenly distributed. Some patient groups, especially the largest, most sophisticated organizations, have pivoted to virtual fund-raising events or found that the crisis has led donors to be more generous.

Groups that rely heavily on small donations from a broad base of individuals seem to be finding the shift to virtual fund-raising more difficult than those that receive much of their funding from a smaller pool of large corporations and foundations. 

Even the hardest hit non-profits have benefited from some of the pandemic’s silver linings. The instant shift to online communications has made it possible to expand their reach, especially to individuals who have been left out in the past because they were unable to travel. Forced closures of offices and dwindling travel budgets have reduced expenses, while in many countries government-provided relief has preserved some jobs.

Members of the National Health Council, an umbrella organization that represents chronic disease patient groups in the U.S., have had “mixed success” in tapping into virtual donations, Randall Rutta, NHC CEO told BioCentury. “I haven’t heard anyone say they have made more money online” than they were collecting through traditional activities.

Virtualization has taken a toll that extends beyond finances, Rutta said. “There are so many things that can’t happen in a virtual environment. The opportunity to recruit new people to a cause and for patients to speak out,” are diminished when people can’t gather in person.

BIO Cares fund

The universe of non-profits that provide services for patients, advocate on their behalf, and fund research includes a few multinational entities with multimillion dollar budgets, a larger number of organizations with more modest budgets and small professional staffs, and a vast constellation of tiny groups operating from kitchen tables and fueled by personal savings and bake sales.

BIO is launching a grant-making program, BIO Cares, to help sustain the smallest patient groups. 

The trade association has raised about $400,000, mostly from small biotechs that don’t have formal grant programs, for its BIO Cares fund that will provide $5,000-$10,000 grants to patient groups. 

BIO is issuing an RFP to identified patient advocacy groups in April, and disbursements will be made on a rolling basis. 

The goal is to provide funding for the smallest patient groups, BIO Vice Chair Paul Hastings told BioCentury. “We want to get funds to the grassroots organizations that typically don’t have access to sources of significant capital. Ideally, this level of support can help tide them over as their operations slowly normalize. COVID has been devastating for these smaller groups. They play a critical role for patients and are too important to lose.”

BIO is conscious of the importance of avoiding the appearance of conflict of interest, Hastings, president and CEO of Nkarta Therapeutics Inc., said. Funds provided by BIO Cares will come with no strings attached.

Increasing demands, decreasing funds

For many groups, demand for services from patient groups has shot up just as funding needed to provide services has dwindled.

“As we speak to patient groups across therapeutic areas in the U.S. and abroad, we feel the pandemic has had a systematic impact both in their need to provide additional services, including some very basic support activities, and a significant decrease in their funding,” Claudia Hirawat, executive chair of Voz Advisors, a consulting company that serves as a bridge between biopharma companies and patient advocacy groups. “In most cases funding is down over 50%.”

The National Organization for Rare Disorders (NORD) surveyed its 330 active members about the effects of COVID-19 and found that “the majority have taken it on the chin, especially the smaller groups,” Peter Saltonstall, NORD’s president and CEO, told BioCentury. “The smaller ones are suffering, the medium ones are hurting but have been able to sustain themselves.”

The cuts will have long-term consequences.

“Staff reductions and reductions in programs will affect clinical support and research support for decades to come,” Hirawat said. “Programs being taken apart will not be easy to rebuild. This will affect the entre the biomedical enterprise.”

Some organizations have successfully navigated the shift to virtual fund-raising, but they are the exception, especially among small- and medium-sized patient groups.

“Patient organizations have been completely decimated,” Barry Munro, chief development officer of the Canadian Spinal Research Organization (CSRO), told BioCentury.

The kinds of fund-raising events that organizations like CSRO rely on disappeared with the first COVID-19 restrictions, haven’t returned and can’t be fully replaced with virtual events, according to Munro. “Events like golf tournaments and annual balls were wiped out completely. The professional fundraisers think they can convert them into virtual events, but virtual events are non-starters.”

CSRO’s revenues declined as its in-person events were cancelled, Munro said. “All that’s left are grants and corporate sponsorship for events that aren’t tied to events.”

Munro noted that COVID relief legislation in the U.S. and Canada “are based on salaries, so if you are an organization that is based on volunteers, there’s nothing in them for you.” Canadian COVID relief measures have helped CSRO retain some of its staff and pay rent, he added.

Some forms of fund-raising are likely to bounce back quickly when economies recover, Munro predicted.

“If you are an organization that raises money through annual conferences, you don’t have to be so worried because coming out of a recession, the first thing companies are going to put money into is marketing, so there should be an uptick in sponsorships for conferences. If companies don’t put money into marketing, including cause marketing, they’re going out of business.”

The promise of a bounce back provides no comfort to individuals who have been hurt by the COVID-related fund-raising fall-offs.

“Anthony Nolan relies on voluntary income and while demand for our services increased by 25%, we experienced a fall in income of £5 million” from the £9 million raised in donations in 2020, said its CEO, Henny Braund. “Many charities, Anthony Nolan included, have been faced with tough decisions to stem the drop in income — from furloughing staff, introducing recruitment freezes and reducing the workforce.”

Braund added: “From a patient perspective we have facilitated 15% less transplants than last year and we have seen a large increase in calls to our helpline by worried patients in need of reassurance and needing financial support as well.”

Biopharmaceutical industry contributions have fueled accusations that some patient groups have sold their independence, and that in policy debates or discussions with regulators the groups promote the interests of corporate sponsors rather than the people they are supposed to serve.

The concerns have led organizations like the NHC to promulgate standards that are intended to avoid conflicts of interest by requiring that corporations maintain arm’s length relationships with the groups they fund.

Decisions to limit pharma contributions and rely on event-based fund-raising may have left some organizations more exposed when much of the economy shutdown in March 2021.

“We certainly raise money through interactions with companies to do specific projects such as burden-of-disease and preference studies, but a good deal comes from walks, runs and other in-person events,” Pat Furlong, president and CEO of PPMD, told BioCentury.

PPMD has organized much of its fund-raising, public awareness and community building around endurance races. The events have special meaning for Duchenne muscular dystrophy families as the disease steals muscle strength, robbing young people of their ability to run, walk and take care of themselves.

Cancellation of the Boston Marathon and a marathon run by The Walt Disney Co. cost PPMD “several million dollars” in lost revenues in 2020 and 2021, Furlong said.

The organization, which has pioneered the integration of patients and caregivers into every aspect of medical product development from funding scientific research to conducting patient preference studies and helping FDA write guidance on the use of patient data to make regulatory decisions, made up only some of the shortfall through virtual events.

“We lost about 25% of our budget,” which was only partially offset by reduced travel expenses, Furlong said. “It is pretty devastating.”

The shortfall has forced PPMD to slash funding of start-ups that are developing DMD therapies, which is a blow to families of children with a deadly, relentless progressive disease.

Because of funding cuts, “if people come to us with a new idea that could go to the clinic quickly, we have to delay or modify our support,” Furlong said. “One company came to us with an interesting approach and asked for a $3 million investment. We told them we can only do $1 million.”

The pandemic has put strains on patient groups that go well beyond funding issues. 

“As the months and days extended to a year, the mental health issues made some of our families wonder if there would ever be an end in sight,” Furlong reported. “We lost some enthusiasm.”

The roll-out of vaccines in the U.S. has created “a renewed hope that the world will reopen. That we will return to a version of normal, that we will be together again.” At the same time, she said that once funding returns to pre-COVID levels, it will take a year or 18 months to recover lost ground.

Another organization that funds research and care, the Muscular Dystrophy Association, has been hit hard by pandemic-related funding shortfalls. “We lost over 50% of our income in 2020 and 50% of our staff have been furloughed,” Sharon Hesterlee, MDA’s EVP and chief research officer, reported.

The effects have been diminished by another COVID casualty, the global slowdown in clinical research. “We had to pause making new grants in 2020 and partly in 2021 but have been able to honor all outstanding commitments. Many of the clinical trials we are funding have been significantly delayed,” she said.

Some small patient groups have given up on fund-raising, going into hibernation or subsisting on reserves and project funding.

“A few months into the pandemic, I threw up my hands on fund-raising and decided to wait until circumstances are less chaotic,” Susan Schaeffer, president and CEO of The Patients’ Academy for Research Advocacy, told BioCentury. The Patients’ Academy for Research Advocacy develops educational programs that equip patients and care partners to contribute their unique expertise to the development of new and better medicines.

“There has been a lot of grant money and charitable giving aimed directly at COVID-19 programs and content. It may be that organizations with a narrower focus, i.e., on a single disease or condition, may have more avenues for funding than an organization like mine that doesn’t have a disease focus. I’m pivoting to smaller projects with biotechs and patient organizations that have a disease focus as a way to build materials that I can adapt for the disease-agnostic programs that I think are necessary and will be impactful,” she said. 

The virtue of virtual

When the economies around the world abruptly shut down in the spring of 2020, every patient and medical group suffered from plunging revenues, increasing demands for services and uncertainty about the future.

Some quickly scrambled out of the hole, leveraging substantial financial resources and professional management to find new ways to support their activities.

The wake-up call for the Leukemia & Lymphoma Society (LLS) came in March 2020 when it was forced to cancel “The Big Climb,” an event in which firefighters scramble up the 1,311 steps of the Columbia Center and raise millions of dollars in donations for the charity.

The Big Climb “was scheduled for the week we understood that residents at a nursing home outside Seattle had succumbed to COVID,” LLS CMO Gwen Nichols told BioCentury. “We couldn’t ask firefighters to climb the tower” and put vulnerable individuals in the community at risk.

The society experienced a “tough few months when had to cut back on what we hoped to support and some really great science that was planned,” Nichols said.

In addition to honoring funding commitments it had made to scientists, LLS was concerned that the combination of forced lab shutdowns and loss of funding from other sources would drive young scientists to abandon research careers.

LLS, the largest non-profit funder of blood cancer research, reached out to government and industry to fill gaps and launched virtual fundraising campaigns.

“We talked with [NCI Director] Ned Sharpless about the fact that there would be a shortfall for young investigators,” Nichols told BioCentury. “NCI put together an emergency grant program to support people who had grants but were losing some funding.”

LLS partnered with other funders, including the Mark Foundation for Cancer Research and the Rally Foundation for Childhood Cancer Research, to pool resources to support research.

LLS also “doubled down” on its requests to biopharma companies for funding, Nichols said.

The pivot to virtual fundraising “has succeeded beyond our expectations,” Nichols said.

The combination of increased funding from industry and virtual fundraising has brought LLS’s research funding close to pre-pandemic level and in 2022 it expects to have completely recovered. In 2020 it funded 120 active grants.

NORD has also fared well in the pandemic. “NORD has had a remarkable year,” Saltonstall said. “We raise 35 to 40 percent of our budget through events, all of which have historically been in-person. We pivoted to virtual and didn’t see a huge decrease in support.” The loss in revenues was offset by decreased costs associated with holding and traveling to in-person events, he added.

Although some patient groups, especially those with long-term sponsorship from companies or foundations, are weathering the COVID storm, Voz Advisors suggests that biopharma companies check in on the organizations in that support patients in their therapeutic areas. “Pick up the phone and call your key contacts,” it recommended in a note about patient engagement and advocacy during the pandemic. “Relationships are our cornerstones in difficult times; work to find tangible ways you can help.”

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