Increasing access to fertility care through creation of a private foundation: the Chicago experience
Eve C. Feinberg, M.D.,a Lauren Westbay, M.D.,b Jennifer Hirshfeld-Cytron, M.D., MSCI,c Craig S. Niederberger, M.D.,d and Meike L. Uhler, M.D.c
a Department of Obstetrics/Gynecology, Northwestern University, Chicago, Illinois
b Department of Obstetrics/Gynecology, Loyola University, Maywood, Illinois
cFertility Centers of Illinois, Chicago, Illinois
dDepartment of Urology, University of Illinois, Chicago, Illinois.
Presented at the 2016 American Society for Reproductive Medicine Meeting, Salt Lake City, UT
Infertility affects 12% of couples, and one of the major barriers for affected couples is access to care (1). Only 24% of patients in the US seeking infertility services have access to all of the care needed to achieve pregnancy (2, 3). Limited access is a multifactorial problem that is influenced by insurance coverage, state and federal policy, employer policy plans, and cost (4-6). As part of the initiative to raise awareness, ASRM held a Summit Meeting in Washington, DC in 2015 to address this challenge (3). Actionable strategies were discussed and one mechanism suggested was the creation of private foundations.
The Life Foundation was created in honor of Dr. Kevin J. Lederer, reproductive endocrinologist, who devoted his practice to the care of infertility patients. The mission is to promote health and alleviate the mental and physical distress of individuals and couples diagnosed with infertility through education and financial assistance.
This is an observational study that evaluates the impact of The Life Foundation.
The specific details described include the timeline required to create a private foundation, the percentage of area providers with donated time or resources, fundraising data and ongoing pregnancy and live birth outcomes from grant recipients.
To create the Kevin J. Lederer Life Foundation, a 501(c) (3) application was initiated in May 2013 and granted in June 2014. The Board of Directors and Medical Advisory Boards were formed, bylaws and articles of incorporation were created, and fundraising efforts were initiated. The Board of Directors includes 4 Reproductive endocrinologists representing 3 large practices, 1 reproductive attorney, 1 infertility nurse/office manager, and 1 family member of Dr. Lederer. Meetings were set up with physicians from every SART member clinic in the Chicagoland area to gain support.
The Life Grant program was created with two types of grants: Financial Assistance Grants (up to $10,000) and Donated Services Grants. Decisions regarding number of financial awards and donated cycles are made in January, the beginning of the fiscal year. Patients can only apply for one type of grant and applications from all genders are accepted. Financial grants can be used towards infertility treatment or adoption. Eligible patients must live in Illinois or the neighboring states and have a combined income of less than $150,000. If applying for a grant to that would use autologous oocytes, women must be 41 years or younger, with a body mass index < 40 kg/m2, FSH < 15mIU/mL, and AMH >0.5ng/dL. If a male partner is involved, then information on age and a semen analysis is required. All applicants planning to carry a pregnancy must have BMI < 40 kg/m2. Grants must to be used within one year of their award and financial grants can only be applied towards future treatment. All payments were made from the foundation to the medical providers; the patients were not given cash awards.
Grant review is done through the Medical Advisory Board (MAB), comprised of 7 reproductive endocrinologists from the Chicagoland area. The applicant’s clinic of origin is blinded to the reviewers and reviewers are not assigned any applications to review from his/her clinic of origin. Each application is reviewed and scored by 2 MAB members, and the final score is the average of the two. The total score is based on age, BMI, ovarian reserve screening, semen analysis, uterine characteristics, personal statement and physician endorsement and is worth 100 points. Applicants are broken down into three categories, financial grants, donated services grants and adoption. The highest scoring applicants in each category were awarded grants. Those with the best prognosis, most compelling personal statements and highest endorsements from their treating physicians were most likely to be awarded a grant. Adoption grants are scored based on personal statement and feasibility for patient to fund the remaining costs.
Of the 20 practices in Illinois that provide ART services, 14 (70%) participated in the Life Foundation (Figure 1). Partner practices provide unreimbursed care through either donation of an IVF cycle (exclusive of anesthesia and cryopreservation fees) or donation of testicular sperm extraction (TESE) procedure. Other Foundation Partners provided free pre-implantation genetic testing for grant recipients (PGS for aneuploidy screening and PGD for single gene disorders) reproductive attorneys provided discounted legal services, and third party agencies provided discounted agency fees. Pharmaceutical companies were solicited to provide sponsorship at various support levels for the financial assistance grants for the Life Foundation. A complete listing of Foundation partners and supporters is on the website, www.lifefindsaway.org.
Two years of data are available for Life Grant applicants and outcomes, 2015 and 2016 (Table 1). In 2015, there were 85 applicants and 9 grants awarded (11.7%). Six were donations of IVF cycles (valued at 11,500 each), and three were financial grants. The financial grants totaled $14,500 and were used towards a gestational carrier ($7,500), egg donation ($5,000), and adoption ($2,500). The total value of grants awarded in 2015 was $83,500. From the 2015 recipients, there have been six live births (2 from donated IVF cycles, 1 from a financial grant for use of a gestational carrier, 1 from a financial grant for egg donation, 2 live births from an adoption of twins. Of the 6 IVF cycle grants, 2 recipients became pregnant as a result of IVF, 2 recipients had negative outcomes from their IVF cycles and 2 recipients spontaneously conceived after the grant was awarded but prior to treatment. In 2016, there were 87 applicants and 14 Life Grant recipients (16.1%). Nine IVF cycle grants were awarded including one cycle that also covered PGD for BRCA with PGS for aneuploidy screening. There were five financial grants awarded totaling $33,750 with the following breakdown: egg donation ($10,000), egg donation ($5,000), adoption ($8750), gestational carrier ($5,000), and donor sperm with IUI ($5,000). Two of the financial grant recipients also received donated legal services (value $8200). The total value of grants awarded in 2016 was $138,950. Of the 9 IVF cycle grants, 5 recipients became pregnant, 2 recipients had negative outcomes and 2 recipients are currently in treatment. Of the 5 financial grants, 2 recipients became pregnant, 1 recipient had a negative outcome, 1 recipient is currently pursuing treatment and 1 adoption is pending. The 2016 grant process thus far has yielded 6 pregnancies that are currently ongoing (>20 weeks) and three live births after two deliveries (twins and a singleton).
The main fundraiser for the Foundation is an annual 5K race called Run for Life. Corporate sponsorships and individual donations raised $51,038 in 2016. In addition, the Foundation hosted two other fundraising events, Bowl for Life and Spring Fling.
The Foundation is an all-volunteer organization with low overhead. Excluding the financial grants, expenses included marketing (printed brochures distributed to patients in all REI practices) technology (subscription costs for the electronic grant applications, website costs, Go to Meeting), organization of the 5K race, and professional fees (legal, accounting and insurance) totaling $15,664.
In addition to the grants services awarded, reproductive endocrinologists, urologists, attorneys and psychologists donated time to create free structured patient educational programs both in-person and via webinar. Topics have ranged from legal aspects of adoption or surrogacy, recurrent pregnancy loss, male infertility, genetic testing in ART, fertility financing, and the psychological impact of infertility. The Foundation also hosted one educational event for reproductive endocrinology nurses and one educational event for physicians.
Infertility affects one in eight couples yet access to care is far from universal. Only 15 states have mandated infertility coverage and even in mandated states such as Illinois, coverage is not ubiquitous (2). Even within mandated states, only 50% of patients presenting to care at the largest practice in Illinois have fully state mandated coverage, 30% of patients have partial coverage and 20% of patients have no coverage at all (personal communication). Loopholes exist within the law allowing exceptions to providing infertility care in certain circumstances. Furthermore, insurance “coverage” can be restricted to diagnostic testing only or give an individual a life time maximum dollar amount that often only covers a portion of an IVF cycle. Thus even within a mandated state, issues of uninsured and underinsured still exist. The Kevin J. Lederer Life Foundation demonstrated one avenue to increasing access to infertility treatment for those who otherwise would not be able to afford treatment. The Life Foundation was created over the course of one year and has already provided grants to 23 patients in just three years. Nineteen grants will be awarded in 2017. The foundation has successfully engaged 14 of the 20 SART member clinics in Illinois with the goal to increase participation to 100%. Participation has extended to include urologists, reproductive attorneys and third party agencies.
At the current time, the Life Foundation is a volunteer organization with no paid staff. The combination of contribution of service and time of the local professionals outside of busy clinical hours is key to the success of the grants. The fundraising efforts on multiple levels including patients and industry reflect the engagement and support of the entire community to increase access to fertility care.
By the end of 2017, 41 grants will have been awarded, over a dozen babies born, and many more patients starting treatment who otherwise would not have been able to pursue care. These outcomes are only possible through collaboration of multiple entities invested in increasing access to care.
In conclusion, the Life Foundation can serve as a model for other providers who are interested in addressing the gap in access to care. These efforts are meant to be temporizing and provide an immediate solution while pursuit of continued attempts for policy change, expansion of insurance coverage and creation of more cost effective interventions are ongoing. Together, the Life Foundation and the development of other similar programs could significantly and immediately improve access to fertility treatment on a national scale.
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The Life Foundation expresses sincere appreciation to Mrs. Frances Lederer and her family for the inspiration to begin the Kevin J. Lederer Life Foundation. The authors thank the Life Foundation Executive Board Members: Nidhi Desai, JD, Jonathan Lederer, JD, Randy Morris, MD, Lisa Rinehart, RN, BSN, JD, Christopher Sipe, MD, and Medical Advisory Board Members: Obehi Asemota, MD, Michelle Catenacci, MD, Todd Deutch, MD, Mary Ellen Pavone, MD, MSCI, Jared Robins, MD, Elena Truckhasheva, MD, Musa Zamah, MD, PhD for their outstanding contribution to this organization.