CDA Foundation does its best to be transparent about our funding sources. Legally, all non-profits operating in the United States (U.S.) need to file a 990 form with the Internal Revenue Service and these forms need to be available publicly. CDA Foundation’s 990 forms are available through our website (https://cdafound.org/corp_docs/), IRS (https://www.irs.gov/charities-non-profits/search-for-tax-exempt-organizations), or third party sites (https://projects.propublica.org/nonprofits/organizations/810946224). These reports also include executives’ compensation and how our funding is spent. Our 990 forms provide much more detail than provided here.
As shown in Figure 1, 59% of all our funding comes from non-profits with the remaining 41% coming from for-profit companies. For nearly all non-profit donations and grants, we must compete with other non-profit organizations (this excludes personal donations). This requires a formal proposal that outlines the goals of the project, expected outcomes, and a budget.
The funding from for-profit organizations is nearly always in the form of research grants which are highly competitive. Companies put out requests for proposals (RFP) on their Investigator Sponsored Research (ISR) portals. If you are not familiar with these funding sources, type the name of any company and ISR (or investigator-initiated research) in your search engine to see a list of therapeutic areas and research areas they are currently supporting. CDA Foundation submits proposals including the scope of work, budget, timing, and staffing. Sometimes we win these proposals and other times other organizations (mostly universities) win these research proposals. These are not marketing agreements. They go through a scientific merit review before being granted. A review of all our >120 publications will show that CDA Foundation has never reported product specific analyses (e.g., specific medicine or diagnostic test). We do not apply for grants that require analyses for a specific product.
The breakout of our major donors is shown below. As shown in Figure 2, 30% of all our funding comes from Gilead. Nearly all of this is coming from research grants that we apply for. For many years, CDA Foundation’s goals have been aligned with Gilead’s goals of better understanding the epidemiology of viral hepatitis, and we did win a number of grants to collect, analyze and model HCV/HBV disease burden. That said, many other organizations also received Gilead grants. Gilead had the largest grant program in the industry to support viral hepatitis research. If another company put out large RFPs for HCV and HBV research, they would have been our biggest source of funding. There is no special relationship between Gilead and CDA Foundation that would have resulted in CDAF receiving a disproportionate amount of grants. We are grateful to Gilead for supporting our research.
Our second largest donor has been John C. Martin Foundation. John funded his foundation with his own money. He could have spent it any way he chose but he chose to set it aside to fund research. John and Lily have been great supporters of the Polaris Observatory and provided the initial funding to create Polaris and continued supporting the observatory. We are grateful for their support since inception of the Polaris Observatory. To receive these grants, CDA Foundation must apply, and our proposals are reviewed by their board of directors. Our proposals compete with all other proposals they receive.
Our third largest donors are Homie Razavi and his partner Christine Shearer. As anyone who runs a non-profit knows, despite best efforts to raise funds, there are always years with a budget shortfall. They have personally funded CDA Foundation to enable it to continue its mission. The above percentage excludes a number of loans they have made to CDA Foundation to help it through the lean times and providing office space free of any rent to CDA Foundation for the last eight years. They could have spent their money any way they chose but they decided to support viral hepatitis elimination. Their children do work for CDA Foundation but only because the family believes in the mission of the Foundation’s work and they are highly qualified. The 990 tax filings show that the family has donated more to the foundation than received in compensation.
Our fourth largest supporters are U.S. government agencies including U.S. CDC and state public health agencies. We are grateful for their support, and this has enabled us to analyze HCV epidemiology in half of all U.S. States. A U.S. CDC grant also enabled us to run an HCV/HBV screening program among pregnant women in Uzbekistan. The COVID-19 loans by the U.S. government, which were later forgiven, allowed us to continue our operations during a very difficult period. We are appreciative of funding provided by the U.S. government and its agencies.
Our fifth largest supporter is AbbVie who has also supported the Polaris Observatory, modeling, and global epidemiology research for hepatitis C virus in high income countries. Their support enabled us to develop better estimates of HCV treated patients in high income countries. We thank them for their support.
Zeshan Foundation of Hong Kong has also provided support for assessment of HCV and HBV disease burden in Asia, and we thank them for their grant.
Finally, we are also supported by various grants from World Health Organization (WHO). WHO has been a great collaborator, and the Polaris Observatory has provided much in-kind support to the regional and Geneva offices since 2015. Unfortunately, WHO is in a similar predicament as every other organization working on viral hepatitis elimination – shortage of funding. We would like to thank them for the financial support they have been able to provide despite their limited resources. If you have any questions regarding where our funding comes from, please reach out to us at support@cdafound.org. We will be happy to answer any questions. We are committed to be transparent about our sources of income and our expense.
Frequently Asked Questions
- What falls under the other category in Figure 2?
65% of the other category are non-profits and small personal donors. This would include grants from the Hepatitis Fund, various agencies that purchase HBV and HCV prevalence data, and governments that agree to pay for CDA Foundation’s support for their national program. It also includes generous donations from personal donors whose family has been impacted by viral hepatitis. Since inception, we have received annual donations from individuals with family members infected with HCV in Egypt. These donations are the most precious and it means a lot to us to be recognized by family members who see the value of our work. The remaining 35% are research grants and funding from for-profit organizations not already shown in Figure 2. Although our staff list all companies which provide research grants to CDA Foundation on their disclosure forms, it is important to keep in mind that they account for a very small percentage of our overall income.
- What other companies support CDA Foundation?
We have received research grants and support from Assembly Biosciences, Boehringer Ingelheim, Intercept, Merck, Novartis, Pfizer, and Roche (listed alphabetically).
- Will the share of support from Gilead change in 2023 as result of the recent Relink grant?
Yes, but only slightly. We were honored to compete and win an $8 million grant to support the relinking of diagnosed but untreated HCV and HBV patients in the United States. This grant will change the percent of total revenues coming from Gilead. However, accounting standards in the US (https://fasab.gov/accounting-standards/) require that organizations only recognize the revenue which have been earned. Thus, CDA Foundation can only recognize the amount of the total grants that it spends – donation to other non-profits and project management expenses. The full impact of the Relink grant will not be reflected in our finances until 2025–2026.
- Why is CDA Foundation’s management on pharmaceutical advisory boards?
With very limited funding available for viral hepatitis elimination, for-profit companies provide a much-needed source of programs and funds to eliminate viral hepatitis (e.g., donation of medicine to Georgia and Iceland, Netflix payment models, special pricing models, reimbursement of screening programs, UHEP program in Uzbekistan, free screening pilot program in Kazakhstan…). These private public partnerships (PPP) allow countries to implement programs that would not have been possible otherwise. To shape the strategy of research and future activities, it is important to have a seat at the table and to be able to provide inputs to pharmaceutical and diagnostic companies. However, our bylaws clearly state that no employee, including management, can financially benefit from consulting or work for other organizations. CDA Foundation requests that any and all honorariums from any advisory board membership to be donated the foundation to allow it to continue its work. Our management also sits on advisory boards of several non-profits and patient groups. However, they are not reported in conflict-of-interest statements.
- Given all the countries you work with and all the travel, how does CDA Foundation manages its travel expenses?
According to organization’s bylaws, all employees including management are required to travel coach on all flights (of any duration) and stay at modest lodging. Employees can use their personal airline points or funds to upgrade to business class.
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