Do Children’s Organ Transplant Association (COTA) parents typically have insurance? Yes, COTA parents typically have individual (private, Medicaid or Medicare) and family coverage (private only), and most COTA transplant-needy kids and young adults have been insured since birth.
If COTA families have insurance, why do they need help? No insurance plan covers all transplant-related expenses, which are significant. Transplant costs vary tremendously based on a number of factors, but generally transplants can cost between $250,000 and $800,000. These costs do not include family needs including lodging, food and transportation during the transplant stay. Additionally, post-transplant medications and medical care costs often add up to more than $10,000 annually.
Most insurance providers require a family to pay an annual deductible that can exceed $10,000 and require a copayment for each visit to the doctor, clinic or for individual medical tests. No plan pays all transplant-related expenses and even a ‘solid’ insurance plan may only cover 80% of the ‘normal and customary’ expenses incurred within a pre-determined network or at a specific hospital.
Even with insurance coverage, very few transplant families have the resources to meet these tremendous financial demands. When faced with the burden of a child’s potentially fatal diagnosis, most families need help.
Why do families choose to raise funds through an organization like COTA? When most parents first hear a medical diagnosis where a transplant is the only chance at survival, the medical team typically tells them they are going to need a strong and supportive social network of family and friends to help them not only emotionally, but also financially. Fundraising for transplant-related expenses eliminates a significant stress for families and allows them to focus on their patient’s medical and emotional needs.
While contributors’ natural instinct is to provide financial support directly to the transplant family, there are several reasons it is recommended that a qualified not-for-profit, such as COTA, is utilized for fundraising:
The Internal Revenue Service (IRS) does not allow tax-deductible gifts to be made to individuals. Therefore, COTA works with community volunteers and ensures that 100% of the funds raised by a COTA community campaign in honor of a child or young adult will be used for transplant-related expenses. Once a family chooses to work with COTA, that family is eligible to submit allocation requests to COTA throughout the patient’s lifetime.
Does COTA take a percentage of what is raised in honor of a child or young adult? No, COTA does not charge for its services or take a percentage of funds raised. 100% of funds raised in honor of patients are used for transplant-related expenses. Each COTA family (at no cost to the family) is provided a donation page for online contributions, and a campaign website is offered for fundraising and communications to the community volunteer team.
How does COTA invest the funds it collects? COTA’s Board of Directors has approved an investment policy statement, which the Board believes is a conservative approach to minimize risk, to preserve investment capital and meet the transplant-related expenses of patients as well as day-to-day operational needs of COTA.
How do COTA families access the funds contributed? COTA has established internal procedures to ensure funds granted to families are used for appropriate transplant-related expenses. Each family must follow COTA guidelines, which include providing appropriate documentation for all transplant-related expense requests. COTA reviews the documentation and allocates funds to patient families or service providers.
Is COTA considered a reputable charity? Most definitely; Guidestar, considered by those in philanthropy to be the gold standard for evaluating charitable organizations, has given COTA an “Exchange Seal” that is comparable to the Good Housekeeping Seal of Approval and demonstrates COTA’s ‘commitment to transparency.’ Also, COTA is an Accredited Charity with the Better Business Bureau and its Wise Giving Alliance.
In July 2017, COTA received Charity Navigator’s 4-star rating for the seventh year in a row. The 4-star rating (Charity Navigator’s highest) is given to not-for-profit organizations that practice exceptional fiscal responsibility and governance in fulfilling their mission. According to Charity Navigator CEO Michael Thatcher, “Only 3% of charities we evaluate have received at least seven consecutive 4-star evaluations, indicating that COTA outperforms most other charities in America. This ‘exceptional’ designation from Charity Navigator sets COTA apart from its peers and demonstrates to the public its trustworthiness”
What if COTA is not around in 10 years? COTA was founded in 1986, and COTA’s Board of Directors and supporters are committed to ensuring its sustainability long into the future. In the unlikely event that COTA would cease business operations, COTA’s corporate and legal structure ensures that remaining funds would be disbursed for qualified transplant-related services to the patients on its roster.
“In our family's case, the prospect of a transplant was a worst case scenario. Isabella ingested something that caused her kidneys to quit working, and when we heard that a transplant was our next step … we had already lost hope in so many ways. Once we were introduced to COTA, we learned of their many successful transplant stories and this helped to renew our hope that Isabella was going to make it. It also gave us hope to know that the COTA fund will be with her throughout her lifetime.”
~ Les and Cindy Crutcher, Parents of Isabella