- Email: [email protected]
Increasing access to fertility care through private foundations
Increasing access to fertility care through private foundations Benjamin J. Peipert, B.A.,a Jacqueline C. Hairston, M.D.,a Dana B. McQueen, M.D., M.A.S.,a Camille Hammond, M.D.,b and Eve C. Feinberg, M.D.a a Department of Obstetrics and Gynecology, Division of Reproductive Endocrinology and Infertility, Northwestern University, Chicago, Illinois; and b Tinina Q. Cade Foundation, Owings Mills, Maryland
Objective: To characterize the available support for infertility treatment and populations served by private foundations across the United States. Design: Web-based cross-sectional survey. Setting: Not applicable. Patient(s): Not applicable. Intervention(s): None. Main Outcome Measure(s): Geographies and populations served, dollar-amount and scope of financial assistance provided by private foundations for individuals seeking financial assistance for infertility treatment. Result(s): Thirty-seven private foundations were identified, 25 responded (68% response rate). More than one-half of the foundations had awarded grants to lesbian, gay, and transgender individuals, as well as single men and women. Forty percent of the foundations serve only a single state or geographic region. Foundations have provided 9,996 grants for infertility treatment, 1,740 in 2016 alone, with an average value of $8,191 per grant. The Livestrong foundation has provide more than 90% of these grants, and only to patients with a history of cancer. Twelve percent of foundations provide assistance for fertility preservation in patients with cancer, and 20% provide assistance for elective oocyte cryopreservation. Conclusion(s): Private foundations significantly increase access to infertility care for individuals and couples affected by cancer who could otherwise not afford treatment. Significant heterogeneity exists regarding the populations served and the services available for grant support by these foundations, and the landscape of options for patients unaffected by cancer is severely limited. (Fertil SterilÒ 2019;111:1211–6. Ó2019 by American Society for Reproductive Medicine.) El resumen está disponible en Español al final del artículo. Key Words: Private foundations, financial assistance, assistive reproductive technologies, in vitro fertilization, access to care Discuss: You can discuss this article with its authors and other readers at https://www.fertstertdialog.com/users/16110-fertilityand-sterility/posts/44412-27319
I
nfertility affects one in eight couples in the United States (1). The field of infertility has experienced unprecedented growth in recent years, and this trend is expected to continue owing to growing demand from delayed childbearing (2). However, it is estimated that fewer than one-fourth of couples with infertility have sufficient access to fertility care. Access to care is defined as the ability to afford
all of the care needed to achieve pregnancy, and it is limited by barriers such as the cost of medical services and lack of adequate health insurance to afford the necessary diagnosis and treatment services (3, 4). Despite accounting for 1.7% of all infants born in the United States, access to assisted reproductive services among women aged 15–44 years fell from 23% in 1995 to 16% in 2010 (1, 5).
Received November 13, 2018; revised February 7, 2019; accepted February 18, 2019; published online April 24, 2019. B.J.P. has nothing to disclose. J.C.H. has nothing to disclose. D.B.M. has nothing to disclose. C.H. has nothing to disclose. E.C.F. has nothing to disclose. B.J.P. and J.C.H. should be considered similar in author order. Supported by the Kevin J. Lederer Life Foundation and Tinina Q. Cade Foundation. Reprint requests: Eve C. Feinberg, M.D., 676 N. St. Clair, 23rd floor, Suite 2310, Chicago, IL 60611 (E-mail: [email protected]). Fertility and Sterility® Vol. 111, No. 6, June 2019 0015-0282/$36.00 Copyright ©2019 American Society for Reproductive Medicine, Published by Elsevier Inc. https://doi.org/10.1016/j.fertnstert.2019.02.025 VOL. 111 NO. 6 / JUNE 2019
The prevalence of infertility is similar among developed nations, but the ability to access general infertility and assisted reproductive technology (ART) services is not (6). Countries that have greater coverage for ART services have a higher percentage of live births from ART. In Sweden, 3.5% of all births are from ART, in Australia 3.6%, and in Denmark 5.9% (7). Countries that do not offer subsidized ART have a large unmet need. Cost is one of the most significant barriers to access to ART (8). One cycle of in vitro fertilization (IVF) costs on average of $10,000–$15,000 and services are often not covered by health insurance. Despite being recognized as a disease by the World Health Organization, only 15 states have laws 1211
ORIGINAL ARTICLE: EPIDEMIOLOGY protecting coverage for medical conditions resulting in infertility (4). Even in mandated states, coverage is not ubiquitous. In Illinois, for example, one-half of all patients presenting to the largest fertility practice in the state had full state mandated coverage, 30% had only partial coverage, and 20% had no coverage at all (9). Insurance ‘‘coverage’’ may be restricted to diagnostic testing or place limits on lifetime maximum benefits (9). As a result, only people of high socioeconomic status or with premium insurance can afford the needed treatment, leading to substantial disparities in access to care (10). Private foundations have emerged as one mechanism to immediately increase access to infertility care. These foundations provide grants in the form of financial assistance or donated medical services for those patients who otherwise would not be able to access ART. There is currently no single internet site or publication that provides comprehensive information on these foundations. Little is known about the range and consistency of services provided to patients. The aim of the present study was to characterize the available support for infertility treatment and populations served by private foundations across the United States.
MATERIALS AND METHODS This study was evaluated and approved by the Northwestern University Institutional Review Board. A web-based search was conducted to identify private foundations providing financial assistance for infertility treatment. A Google search was performed to identify eligible foundations with the use of the key words ‘‘infertility,’’ ‘‘financial assistance,’’ and ‘‘grants.’’ A similar search was conducted on social media sites and applications, such as Facebook, Instagram, Guidestar, Local Independent Charities of America, Resolve, and the Better Business Bureau, to identify not-for-profit organizations in the fertility space. Additional groups were identified through the American Society for Reproductive Medicine 2017 Special Interest Group on Access to Care. All foundations in the United States that offered grants or discounted medical services with the purpose of providing financial assistance for infertility treatment were eligible for inclusion. Identified foundations were invited to participate via e-mail in a 14-item survey hosted on Survey Monkey, a web-based survey collection website. Before distribution, the survey was reviewed by members of the board of the Kevin J. Lederer Life Foundation and Tinina Q. Cade Foundation, two not-for-profit organizations that provide financial support for infertility treatment. Responding organizations were also asked to identify additional foundations for inclusion, not initially discovered via the web-based search. Nonresponders were contacted by e-mail and telephone up to 6 times (once per week for 6 weeks) to increase participation. The list of organizations that did not respond to our survey is listed in Supplemental Table 1. Statistical analyses, including percentage, mean, and range calculations, were conducted with the use of Microsoft Excel. 1212
RESULTS Thirty-seven foundations providing grant support or discounted medical services for infertility treatment were identified through this internet search, of which 25 completed the survey (68% response rate) from June to November 2017. These foundations had existed for an average of 11 years (range 2–35 years), with more than half of the organizations founded in the past 10 years (median 8 years). All but one organization (96%) had a governing board of trustees or an executive board. The geographic region served, populations served, number of grants provided, and grant types provided by organizations are reported in Table 1. Twenty (80%) of the 25 foundations are located in states that already mandate coverage for infertility treatment. Nineteen (76%), 17 (68%), and 13 (52%) of the foundations include lesbian women, gay men, and transgender individuals among their grant awardees. Seventeen foundations (68%) reported providing grants or discounts to single women and 14 (56%) reported providing grants or discounts to single men. Figure 1 shows which states in the United States mandate coverage for infertility treatment and the location of private foundations included in this study. Fifteen (60%) of the foundations provide grants or discounts to recipients across the entire United States, 4 (16%) serve a specific geographic region, and 6 (24%) serve only a specific state. Three foundations (12%) provide grants or discounts only to Jewish patients. Three foundations (12%) only serve patients with cancer or cancer survivors. A total of 9,996 grants have been awarded for infertility treatment by participating foundations, with 1,740 grants awarded in 2016 alone. Most grants were provided by the Livestrong foundation, which has provided a total of 9,187 (92%) discounted fertility preservation and fertility treatments, 1,568 (90%) in 2016 alone, to patients with a history of cancer. Eleven foundations (44%) charge an application fee (average $42, range $25–$60). Grants were provided to patients in the form of either financial assistance or donated infertility services (average value $8,191, range $500–$25,000), including discounted treatment and reduced-cost or fully covered IVF cycles. The average discounted treatment value from the Livestrong foundation, which provided the majority of these grants and discounts, was $4,560. Twenty-three (92%) of the foundations provide assistance to infertile couples, 3 (12%) provide assistance solely for fertility preservation in underor uninsured patients with cancer, and 5 (20%) provide financial support for elective oocyte cryopreservation.
DISCUSSION Limited access to fertility care is a multifactorial problem at the intersection of state and federal policy, insurance coverage, employer policy plans, and cost (2, 11, 12). In the absence of universal insurance coverage for ART across the United States, grants provided by private foundation represent one mechanism by which individuals or couples can overcome economic barriers to accessing fertility treatments. This is the first study to characterize the populations served and grants provided by foundations for fertility care in the United States. VOL. 111 NO. 6 / JUNE 2019
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TABLE 1 Characteristics among private foundations offering grants for fertility treatment. Infertility/fertility preservation populations served
Eligibility restrictions Foundation
Total grants
16 1 16 5 4 3 28 2 3 1 6
26 7 70 17 12 6 122 14 13 1 >150
5or6
15
X
X
X
NR 14 12 1,568 8
3 19 22 9,187 75
X
X X X X
X X X X X
4 1
4 6
X X
3 2–3 10 2 16 8
13 >30 68 4 28 84
Peipert. Foundations increase access to care. Fertil Steril 2019.
Religious
Geographic
Cancer patients
Infertile couples X X X X X
X X
X X X X X
X X
X
X
Single F
Single M
Lesbian f
Gay m
Trans
X
X
X X X
X
X X X X X
X X X X X
X X X
X
X X
X
X
X
X
X X X X
X
X X X
X
Gest. carrier
Donor eggs
X
X
X X X
X X X
X
X
X X
X X
Egg freezing Elective
Medical X
X X X
X X X X
X
X
X
X
X
X
X
X
X
X X
X X
X
X
X
X
X
X
X
X
X
X X
X X
X X
X X
X X
X X
X
X
X X X X
X X X X
X X X X
X X X X
X X X X
X
X
X
X
X
X
X X
X X X X
X X X X
X
X
X
X
X X
X X
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Fertility and Sterility®
AGC Scholarship Foundation Angels of Hope, NFP Baby Quest Foundation Fertility for Colored Girls Fertility Foundation of Texas Fertility Within Reach Footsteps for Fertility Foundation Gift of Hope Hasidah Hope for Fertility Foundation International Council on Infertility Information Dissemination Jewish Family and Children's Service of Greater Philadelphia Jewish Fertility Foundation Kevin J. Lederer Life Foundation Kyle Busch Foundation Livestrong Foundation Madeleine Gordon Gift of Life Foundation Nest Egg Foundation Northern California Fertility Medical Center Parental Hope Pay It Forward Fertility Foundation Samfund Starfish Infertility Foundation Team Maggie for a Cure Tinina Q. Cade Foundation
2016 grants
Third-party reproduction
LGBTQ care
ORIGINAL ARTICLE: EPIDEMIOLOGY
FIGURE 1
3 1 1
3
2
1
1 1 2
2
2
1
1
1
2
2
Map of states mandating coverage for fertility treatment (gray) and the location of private foundations offering grants for fertility treatment. Circles represent the individual private foundations offering grants for fertility treatment. The numbers within the circles represent the number of foundations in a given geographic area. Peipert. Foundations increase access to care. Fertil Steril 2019.
Private foundations significantly increase access to ART for individuals and couples that might otherwise be unable to utilize such services. Nearly 10,000 grants have been provided by private foundations to support fertility, at a rate of 1,740 per year in recent years. Based on the grant valuations found in this study, these foundations provide $9 million a year in the form of grants and donated services to couples and individuals seeking infertility treatment. However, the vast majority of these grants and discounted services are available only to patients with a history of cancer. In the absence of a cancer diagnosis, mechanisms for financial assistance for infertility care are limited. A significant finding of this study is the heterogeneity of populations cared for and the services available for grant support by these foundations. Approximately 90% of these grants are provided by a single organization, the Livestrong foundation, which provides grants only to cancer patients and cancer survivors across the United States. Overall, fewer than 60% of foundations in this study served patients across the country. There was little consistency across foundations regarding the dollar amount awarded in individual grants, and although nearly all organizations provide assistance for infertility treatment, fewer than 20% of foundations have supported oocyte cryopreservation or fertility preservation for cancer patients. Furthermore, more than one-fourth of respondents in the study reported that homosexual or transgender patients were not medically eligible for grant support from their foundation. However, we did not directly assess if all foundations ask about sexual orientation or gender identity in the application process. Further research 1214
may be necessary to determine if private foundations are discriminating against homosexual or transgender patients. Another significant finding of this study was that the majority of private foundations offer support in states with mandated insurance coverage. Private foundation support often bridges the gap between what is covered by insurance and what a patient needs to pay out of pocket. It may be that in nonmandated states, the cost of infertility care may be too large for private foundations to affect the ability for an individual to access all of the care needed to achieve pregnancy. Despite the growth in ART-facilitated births, access is decreasing, in part because of a number of significant economic barriers, including high under- and uninsurance rates, high outof-pocket expenditures, constrained public payers, reluctant private payers, and limited state mandates regarding ART (3). There are little data available on regional differences in cost per cycle of IVF. Among insured women dropping out of IVF treatment, 25% reported that they could not afford the out-of-pocket costs and an additional 25% reported that they had lost insurance coverage (13). These economic barriers to fertility care are not evenly distributed across the United States. The National Survey of Family Growth has reported that non-Hispanic white race, higher levels of education, and higher household income were all significantly associated with higher use of infertility services (1). Despite the fact that black women were >80% more likely to report infertility than non-Hispanic white women, nonHispanic white women have used infertility services twice as frequently as Hispanic and non-Hispanic black women (14). Other studies have noted that black women were not only underrepresented in the ART population, but that black race was VOL. 111 NO. 6 / JUNE 2019
Fertility and Sterility® an independent risk factor for decreased IVF success, in part because of delayed presentation and the presence of uterine fibroids (15, 16). Further studies are necessary to determine if such disparities in access are corrected or exacerbated by grants provided by private foundations. In addition to limiting access to care, high cost may contribute to adverse events among patients receiving ART. High cost of individual IVF cycles compels women to transfer multiple embryos per cycle to maximize their chances of pregnancy and avoid additional cycles, a practice that increases the risk of multiple births and morbidity to both mother and neonate (17). ART has historically caused ten times the rate of multiple-birth infants compared with the general population (5), and women with multiple-gestation pregnancies are at higher risk for cesarean section, gestational hypertension and diabetes, preeclampsia, hemorrhage, maternal hospitalization, and mental health problems (17). Our study has several notable limitations. There may have been additional private foundations providing financial assistance for ART that exist but were not identified through our web-search methodology. In addition, our response rate was 68% despite multiple attempts to contact nonresponders. The Livestrong Foundation provided a disproportionate volume of the awards in our cohort, and serves only one specific subpopulation, cancer patients and cancer survivors. Given the online nature of the study, it can not be confirmed the degree to which historical documentation was consulted when participants responded to our survey, and responses may be subject to recall bias. In addition, the aim of our study was to assess the landscape of foundations in the United States and not the grant recipients themselves. As a result, we lack demographics and outcomes data among grant recipients, including age of recipients, etiology of infertility, cycle cost to patient, income level, insurance status, pregnancy rate, and multiple gestation rate. We limited our study to the work being done by private foundations because this could be reliably quantified. Further work is needed to quantify the total amount of assistance granted by pharmaceutical companies, industry, and individual physicians and practices that discount treatment. Although private foundations provide a substantial amount of resources for patients with limited access to fertility care, these foundations are relatively young and do not provide consistent resources for populations across the country. In addition, voluntary employer-provided fertility benefits are limited. According to the Mercer National Survey of Employer-Sponsored Health Plans 2017, only 26% of employers with R500 employees currently provide coverage for ART. Continued efforts to expand insurance coverage nationwide are essential (18). Mandating insurance coverage for ART represents a more durable response to the growing need for equitable access to ART. Among the four states with comprehensive mandates (covering four or more cycles of IVF), three of them (Illinois, Massachusetts, and New Jersey) had ART utilization rates 50% higher than the national average (5). However, although insurance mandates are associated with greater access to ART, only 15 states have legislation requiring insurers to provide coverage for fertility
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treatments. It may take years or decades for politicians on the state and national level to develop policies mandating coverage. In the meantime, private foundations represent one modality for reducing the economic barriers to ART. Increased coordination and communication among these groups may help to provide a more consistent set of services for those patients in need of fertility care across the country.
REFERENCES 1.
2.
3.
4. 5.
6.
7.
8.
9.
10. 11. 12.
13.
14.
15.
16.
17.
18.
Chandra A, Copen CE, Stephen EH. Infertility service use in the United States: data from the National Survey of Family Growth, 1982–2010. Natl Health Stat Rep 2014:1–21. Kissin DM, Boulet SL, Jamieson DJ. Assisted Reproductive Technology Surveillance and Research Team. Fertility treatments in the United States: improving access and outcomes. Obstet Gynecol 2016;128:387–90. American Society for Reproductive Medicine. Access to Care Summit, Washington, DC; 2015. Available at: https://www.asrm.org/globalassets/asrm/ asrm-content/news-and-publications/news-and-research/press-releases-and -bulletins/pdf/atcwhitepaper.pdf. Adashi EY, Dean LA. Access to and use of infertility services in the United States: framing the challenges. Fertil Steril 2016;105:1113–8. Sunderam S, Kissin DM, Crawford SB, Folger SG, Boulet SL, Warner L, et al. Assisted reproductive technology surveillance—United States, 2015. MMWR Surveill Summ 2018;67:1–28. Mascarenhas MN, Flaxman SR, Boerma T, Vanderpoel S, Stevens GA. National, regional, and global trends in infertility prevalence since 1990: a systematic analysis of 277 health surveys. PLoS Med 2012;9:e1001356. Chambers GM, Sullivan EA, Ishihara O, Chapman MG, Adamson GD. The economic impact of assisted reproductive technology: a review of selected developed countries. Fertil Steril 2009;91:2281–94. McLaughlin JE, Knudtson JF, Schenken RS, Ketchum NS, Gelfond JA, Chang TA, et al. Business models and provider satisfaction in in vitro fertilization centers in the USA. J Assist Reprod Genet 2019;36:283–9. Feinberg EC, Westbay L, Hirshfeld-Cytron J, Niederberger CS, Uhler ML. Increasing access to fertility care through creation of a private foundation: the Chicago experience. Fertil Steril 2016;106:e4–5. White L, McQuillan J, Greil AL. Explaining disparities in treatment seeking: the case of infertility. Fertil Steril 2006;85:853–7. Aleyamma TK, Kamath MS, Muthukumar K, Mangalaraj AM, George K. Affordable ART: a different perspective. Hum Reprod 2011;26:3312–8. Reindollar RH. Surfing the waves of change in reproductive medicine: past, present and future. A presentation of the 2014 ASRM Strategic Plan. Fertil Steril 2015;103:35–8. Domar AD, Rooney K, Hacker MR, Sakkas D, Dodge LE. Burden of care is the primary reason why insured women terminate in vitro fertilization treatment. Fertil Steril 2018;109:1121–6. Chandra A, Copen CE, Stephen EH. Infertility and impaired fecundity in the United States, 1982–2010: data from the National Survey of Family Growth. Natl Health Stat Rep 2013:1–18. Feinberg EC, Larsen FW, Catherino WH, Zhang J, Armstrong AY. Comparison of assisted reproductive technology utilization and outcomes between Caucasian and African American patients in an equal-access-to-care setting. Fertil Steril 2006;85:888–94. Seifer DB, Frazier LM, Grainger DA. Disparity in assisted reproductive technologies outcomes in black women compared with white women. Fertil Steril 2008;90:1701–10. Macaluso M, Wright-Schnapp TJ, Chandra A, Johnson R, Satterwhite CL, Pulver A, et al. A public health focus on infertility prevention, detection, and management. Fertil Steril 2010;93:16.e1–10. Mercer’s National Survey of Employer-Sponsored Health Plans 2017. Available at: https://www.mercer.com/newsroom/mercer-national-health-survey-employers-finding-new-ways-to-hold-the-line-on-health-benefit-costgrowth.html.
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ORIGINAL ARTICLE: EPIDEMIOLOGY Creciente acceso a tratamientos de fertilidad a traves de fundaciones privadas. Objetivo: Caracterizar la disponibilidad en el apoyo para el tratamiento de la infertilidad y las diferentes poblaciones atendidas en las fundaciones privadas de Estados Unidos. ~o: Encuesta transversal a traves de la web. Disen Entorno: Fundaciones privadas que brindan asistencia financiera para el tratamiento de la infertilidad. Paciente (s): No aplicable. Intervencion (es): Ninguna. Medida (s) del resultado principal: Geografías y poblaciones atendidas, cantidad suministrada en d olares y alcance de la asistencia financiera proporcionada por las fundaciones privadas para personas que buscan asistencia financiera para el tratamiento de la infertilidad. Resultado (s): Se identificaron 37 fundaciones privadas, 25 respondieron (68% de tasa de respuesta). Mas de la mitad de las fundaciones otorg o subvenciones a personas lesbianas, homosexuales masculinos y transexuales, así como a hombres y mujeres solteros. El cuarenta por ciento de las fundaciones atendieron solo a un estado o regi on geografica. Las fundaciones han otorgado 9.996 subvenciones para el tratamiento de la infertilidad, 1.740 en 2016, con un valor promedio de 8.191 d olares por beca. La fundaci on Livestrong ha otorgado mas del 90% de estas subvenciones, y solo para pacientes con antecedentes de cancer. El doce por ciento de las fundaciones dio asistencia para la preservaci on de la fertilidad en pacientes con cancer, y el 20% proporcion o asistencia para la crioconservaci on voluntaria de ovocitos. Conclusion (es): Las fundaciones privadas aumentan significativamente el acceso al tratamiento de la infertilidad para individuos y parejas afectadas de cancer que de lo contrario no podrían permitirse el tratamiento. Existe una heterogeneidad significativa con respecto a las poblaciones atendidas y los servicios disponibles para el apoyo de estas fundaciones, y el panorama de opciones para los pacientes no afectados por el cancer es muy limitado.
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Objective: To characterize the available support for infertility treatment and populations served by private foundations across the United States. Design: Web-based cross-sectional survey. Setting: Not applicable. Patient(s): Not applicable. Intervention(s): None. Main Outcome Measure(s): Geographies and populations served, dollar-amount and scope of financial assistance provided by private foundations for individuals seeking financial assistance for infertility treatment. Result(s): Thirty-seven private foundations were identified, 25 responded (68% response rate). More than one-half of the foundations had awarded grants to lesbian, gay, and transgender individuals, as well as single men and women. Forty percent of the foundations serve only a single state or geographic region. Foundations have provided 9,996 grants for infertility treatment, 1,740 in 2016 alone, with an average value of $8,191 per grant. The Livestrong foundation has provide more than 90% of these grants, and only to patients with a history of cancer. Twelve percent of foundations provide assistance for fertility preservation in patients with cancer, and 20% provide assistance for elective oocyte cryopreservation. Conclusion(s): Private foundations significantly increase access to infertility care for individuals and couples affected by cancer who could otherwise not afford treatment. Significant heterogeneity exists regarding the populations served and the services available for grant support by these foundations, and the landscape of options for patients unaffected by cancer is severely limited. (Fertil SterilÒ 2019;111:1211–6. Ó2019 by American Society for Reproductive Medicine.) El resumen está disponible en Español al final del artículo. Key Words: Private foundations, financial assistance, assistive reproductive technologies, in vitro fertilization, access to care Discuss: You can discuss this article with its authors and other readers at https://www.fertstertdialog.com/users/16110-fertilityand-sterility/posts/44412-27319
I
nfertility affects one in eight couples in the United States (1). The field of infertility has experienced unprecedented growth in recent years, and this trend is expected to continue owing to growing demand from delayed childbearing (2). However, it is estimated that fewer than one-fourth of couples with infertility have sufficient access to fertility care. Access to care is defined as the ability to afford
all of the care needed to achieve pregnancy, and it is limited by barriers such as the cost of medical services and lack of adequate health insurance to afford the necessary diagnosis and treatment services (3, 4). Despite accounting for 1.7% of all infants born in the United States, access to assisted reproductive services among women aged 15–44 years fell from 23% in 1995 to 16% in 2010 (1, 5).
Received November 13, 2018; revised February 7, 2019; accepted February 18, 2019; published online April 24, 2019. B.J.P. has nothing to disclose. J.C.H. has nothing to disclose. D.B.M. has nothing to disclose. C.H. has nothing to disclose. E.C.F. has nothing to disclose. B.J.P. and J.C.H. should be considered similar in author order. Supported by the Kevin J. Lederer Life Foundation and Tinina Q. Cade Foundation. Reprint requests: Eve C. Feinberg, M.D., 676 N. St. Clair, 23rd floor, Suite 2310, Chicago, IL 60611 (E-mail: [email protected]). Fertility and Sterility® Vol. 111, No. 6, June 2019 0015-0282/$36.00 Copyright ©2019 American Society for Reproductive Medicine, Published by Elsevier Inc. https://doi.org/10.1016/j.fertnstert.2019.02.025 VOL. 111 NO. 6 / JUNE 2019
The prevalence of infertility is similar among developed nations, but the ability to access general infertility and assisted reproductive technology (ART) services is not (6). Countries that have greater coverage for ART services have a higher percentage of live births from ART. In Sweden, 3.5% of all births are from ART, in Australia 3.6%, and in Denmark 5.9% (7). Countries that do not offer subsidized ART have a large unmet need. Cost is one of the most significant barriers to access to ART (8). One cycle of in vitro fertilization (IVF) costs on average of $10,000–$15,000 and services are often not covered by health insurance. Despite being recognized as a disease by the World Health Organization, only 15 states have laws 1211
ORIGINAL ARTICLE: EPIDEMIOLOGY protecting coverage for medical conditions resulting in infertility (4). Even in mandated states, coverage is not ubiquitous. In Illinois, for example, one-half of all patients presenting to the largest fertility practice in the state had full state mandated coverage, 30% had only partial coverage, and 20% had no coverage at all (9). Insurance ‘‘coverage’’ may be restricted to diagnostic testing or place limits on lifetime maximum benefits (9). As a result, only people of high socioeconomic status or with premium insurance can afford the needed treatment, leading to substantial disparities in access to care (10). Private foundations have emerged as one mechanism to immediately increase access to infertility care. These foundations provide grants in the form of financial assistance or donated medical services for those patients who otherwise would not be able to access ART. There is currently no single internet site or publication that provides comprehensive information on these foundations. Little is known about the range and consistency of services provided to patients. The aim of the present study was to characterize the available support for infertility treatment and populations served by private foundations across the United States.
MATERIALS AND METHODS This study was evaluated and approved by the Northwestern University Institutional Review Board. A web-based search was conducted to identify private foundations providing financial assistance for infertility treatment. A Google search was performed to identify eligible foundations with the use of the key words ‘‘infertility,’’ ‘‘financial assistance,’’ and ‘‘grants.’’ A similar search was conducted on social media sites and applications, such as Facebook, Instagram, Guidestar, Local Independent Charities of America, Resolve, and the Better Business Bureau, to identify not-for-profit organizations in the fertility space. Additional groups were identified through the American Society for Reproductive Medicine 2017 Special Interest Group on Access to Care. All foundations in the United States that offered grants or discounted medical services with the purpose of providing financial assistance for infertility treatment were eligible for inclusion. Identified foundations were invited to participate via e-mail in a 14-item survey hosted on Survey Monkey, a web-based survey collection website. Before distribution, the survey was reviewed by members of the board of the Kevin J. Lederer Life Foundation and Tinina Q. Cade Foundation, two not-for-profit organizations that provide financial support for infertility treatment. Responding organizations were also asked to identify additional foundations for inclusion, not initially discovered via the web-based search. Nonresponders were contacted by e-mail and telephone up to 6 times (once per week for 6 weeks) to increase participation. The list of organizations that did not respond to our survey is listed in Supplemental Table 1. Statistical analyses, including percentage, mean, and range calculations, were conducted with the use of Microsoft Excel. 1212
RESULTS Thirty-seven foundations providing grant support or discounted medical services for infertility treatment were identified through this internet search, of which 25 completed the survey (68% response rate) from June to November 2017. These foundations had existed for an average of 11 years (range 2–35 years), with more than half of the organizations founded in the past 10 years (median 8 years). All but one organization (96%) had a governing board of trustees or an executive board. The geographic region served, populations served, number of grants provided, and grant types provided by organizations are reported in Table 1. Twenty (80%) of the 25 foundations are located in states that already mandate coverage for infertility treatment. Nineteen (76%), 17 (68%), and 13 (52%) of the foundations include lesbian women, gay men, and transgender individuals among their grant awardees. Seventeen foundations (68%) reported providing grants or discounts to single women and 14 (56%) reported providing grants or discounts to single men. Figure 1 shows which states in the United States mandate coverage for infertility treatment and the location of private foundations included in this study. Fifteen (60%) of the foundations provide grants or discounts to recipients across the entire United States, 4 (16%) serve a specific geographic region, and 6 (24%) serve only a specific state. Three foundations (12%) provide grants or discounts only to Jewish patients. Three foundations (12%) only serve patients with cancer or cancer survivors. A total of 9,996 grants have been awarded for infertility treatment by participating foundations, with 1,740 grants awarded in 2016 alone. Most grants were provided by the Livestrong foundation, which has provided a total of 9,187 (92%) discounted fertility preservation and fertility treatments, 1,568 (90%) in 2016 alone, to patients with a history of cancer. Eleven foundations (44%) charge an application fee (average $42, range $25–$60). Grants were provided to patients in the form of either financial assistance or donated infertility services (average value $8,191, range $500–$25,000), including discounted treatment and reduced-cost or fully covered IVF cycles. The average discounted treatment value from the Livestrong foundation, which provided the majority of these grants and discounts, was $4,560. Twenty-three (92%) of the foundations provide assistance to infertile couples, 3 (12%) provide assistance solely for fertility preservation in underor uninsured patients with cancer, and 5 (20%) provide financial support for elective oocyte cryopreservation.
DISCUSSION Limited access to fertility care is a multifactorial problem at the intersection of state and federal policy, insurance coverage, employer policy plans, and cost (2, 11, 12). In the absence of universal insurance coverage for ART across the United States, grants provided by private foundation represent one mechanism by which individuals or couples can overcome economic barriers to accessing fertility treatments. This is the first study to characterize the populations served and grants provided by foundations for fertility care in the United States. VOL. 111 NO. 6 / JUNE 2019
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TABLE 1 Characteristics among private foundations offering grants for fertility treatment. Infertility/fertility preservation populations served
Eligibility restrictions Foundation
Total grants
16 1 16 5 4 3 28 2 3 1 6
26 7 70 17 12 6 122 14 13 1 >150
5or6
15
X
X
X
NR 14 12 1,568 8
3 19 22 9,187 75
X
X X X X
X X X X X
4 1
4 6
X X
3 2–3 10 2 16 8
13 >30 68 4 28 84
Peipert. Foundations increase access to care. Fertil Steril 2019.
Religious
Geographic
Cancer patients
Infertile couples X X X X X
X X
X X X X X
X X
X
X
Single F
Single M
Lesbian f
Gay m
Trans
X
X
X X X
X
X X X X X
X X X X X
X X X
X
X X
X
X
X
X
X X X X
X
X X X
X
Gest. carrier
Donor eggs
X
X
X X X
X X X
X
X
X X
X X
Egg freezing Elective
Medical X
X X X
X X X X
X
X
X
X
X
X
X
X
X
X X
X X
X
X
X
X
X
X
X
X
X
X X
X X
X X
X X
X X
X X
X
X
X X X X
X X X X
X X X X
X X X X
X X X X
X
X
X
X
X
X
X X
X X X X
X X X X
X
X
X
X
X X
X X
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AGC Scholarship Foundation Angels of Hope, NFP Baby Quest Foundation Fertility for Colored Girls Fertility Foundation of Texas Fertility Within Reach Footsteps for Fertility Foundation Gift of Hope Hasidah Hope for Fertility Foundation International Council on Infertility Information Dissemination Jewish Family and Children's Service of Greater Philadelphia Jewish Fertility Foundation Kevin J. Lederer Life Foundation Kyle Busch Foundation Livestrong Foundation Madeleine Gordon Gift of Life Foundation Nest Egg Foundation Northern California Fertility Medical Center Parental Hope Pay It Forward Fertility Foundation Samfund Starfish Infertility Foundation Team Maggie for a Cure Tinina Q. Cade Foundation
2016 grants
Third-party reproduction
LGBTQ care
ORIGINAL ARTICLE: EPIDEMIOLOGY
FIGURE 1
3 1 1
3
2
1
1 1 2
2
2
1
1
1
2
2
Map of states mandating coverage for fertility treatment (gray) and the location of private foundations offering grants for fertility treatment. Circles represent the individual private foundations offering grants for fertility treatment. The numbers within the circles represent the number of foundations in a given geographic area. Peipert. Foundations increase access to care. Fertil Steril 2019.
Private foundations significantly increase access to ART for individuals and couples that might otherwise be unable to utilize such services. Nearly 10,000 grants have been provided by private foundations to support fertility, at a rate of 1,740 per year in recent years. Based on the grant valuations found in this study, these foundations provide $9 million a year in the form of grants and donated services to couples and individuals seeking infertility treatment. However, the vast majority of these grants and discounted services are available only to patients with a history of cancer. In the absence of a cancer diagnosis, mechanisms for financial assistance for infertility care are limited. A significant finding of this study is the heterogeneity of populations cared for and the services available for grant support by these foundations. Approximately 90% of these grants are provided by a single organization, the Livestrong foundation, which provides grants only to cancer patients and cancer survivors across the United States. Overall, fewer than 60% of foundations in this study served patients across the country. There was little consistency across foundations regarding the dollar amount awarded in individual grants, and although nearly all organizations provide assistance for infertility treatment, fewer than 20% of foundations have supported oocyte cryopreservation or fertility preservation for cancer patients. Furthermore, more than one-fourth of respondents in the study reported that homosexual or transgender patients were not medically eligible for grant support from their foundation. However, we did not directly assess if all foundations ask about sexual orientation or gender identity in the application process. Further research 1214
may be necessary to determine if private foundations are discriminating against homosexual or transgender patients. Another significant finding of this study was that the majority of private foundations offer support in states with mandated insurance coverage. Private foundation support often bridges the gap between what is covered by insurance and what a patient needs to pay out of pocket. It may be that in nonmandated states, the cost of infertility care may be too large for private foundations to affect the ability for an individual to access all of the care needed to achieve pregnancy. Despite the growth in ART-facilitated births, access is decreasing, in part because of a number of significant economic barriers, including high under- and uninsurance rates, high outof-pocket expenditures, constrained public payers, reluctant private payers, and limited state mandates regarding ART (3). There are little data available on regional differences in cost per cycle of IVF. Among insured women dropping out of IVF treatment, 25% reported that they could not afford the out-of-pocket costs and an additional 25% reported that they had lost insurance coverage (13). These economic barriers to fertility care are not evenly distributed across the United States. The National Survey of Family Growth has reported that non-Hispanic white race, higher levels of education, and higher household income were all significantly associated with higher use of infertility services (1). Despite the fact that black women were >80% more likely to report infertility than non-Hispanic white women, nonHispanic white women have used infertility services twice as frequently as Hispanic and non-Hispanic black women (14). Other studies have noted that black women were not only underrepresented in the ART population, but that black race was VOL. 111 NO. 6 / JUNE 2019
Fertility and Sterility® an independent risk factor for decreased IVF success, in part because of delayed presentation and the presence of uterine fibroids (15, 16). Further studies are necessary to determine if such disparities in access are corrected or exacerbated by grants provided by private foundations. In addition to limiting access to care, high cost may contribute to adverse events among patients receiving ART. High cost of individual IVF cycles compels women to transfer multiple embryos per cycle to maximize their chances of pregnancy and avoid additional cycles, a practice that increases the risk of multiple births and morbidity to both mother and neonate (17). ART has historically caused ten times the rate of multiple-birth infants compared with the general population (5), and women with multiple-gestation pregnancies are at higher risk for cesarean section, gestational hypertension and diabetes, preeclampsia, hemorrhage, maternal hospitalization, and mental health problems (17). Our study has several notable limitations. There may have been additional private foundations providing financial assistance for ART that exist but were not identified through our web-search methodology. In addition, our response rate was 68% despite multiple attempts to contact nonresponders. The Livestrong Foundation provided a disproportionate volume of the awards in our cohort, and serves only one specific subpopulation, cancer patients and cancer survivors. Given the online nature of the study, it can not be confirmed the degree to which historical documentation was consulted when participants responded to our survey, and responses may be subject to recall bias. In addition, the aim of our study was to assess the landscape of foundations in the United States and not the grant recipients themselves. As a result, we lack demographics and outcomes data among grant recipients, including age of recipients, etiology of infertility, cycle cost to patient, income level, insurance status, pregnancy rate, and multiple gestation rate. We limited our study to the work being done by private foundations because this could be reliably quantified. Further work is needed to quantify the total amount of assistance granted by pharmaceutical companies, industry, and individual physicians and practices that discount treatment. Although private foundations provide a substantial amount of resources for patients with limited access to fertility care, these foundations are relatively young and do not provide consistent resources for populations across the country. In addition, voluntary employer-provided fertility benefits are limited. According to the Mercer National Survey of Employer-Sponsored Health Plans 2017, only 26% of employers with R500 employees currently provide coverage for ART. Continued efforts to expand insurance coverage nationwide are essential (18). Mandating insurance coverage for ART represents a more durable response to the growing need for equitable access to ART. Among the four states with comprehensive mandates (covering four or more cycles of IVF), three of them (Illinois, Massachusetts, and New Jersey) had ART utilization rates 50% higher than the national average (5). However, although insurance mandates are associated with greater access to ART, only 15 states have legislation requiring insurers to provide coverage for fertility
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treatments. It may take years or decades for politicians on the state and national level to develop policies mandating coverage. In the meantime, private foundations represent one modality for reducing the economic barriers to ART. Increased coordination and communication among these groups may help to provide a more consistent set of services for those patients in need of fertility care across the country.
REFERENCES 1.
2.
3.
4. 5.
6.
7.
8.
9.
10. 11. 12.
13.
14.
15.
16.
17.
18.
Chandra A, Copen CE, Stephen EH. Infertility service use in the United States: data from the National Survey of Family Growth, 1982–2010. Natl Health Stat Rep 2014:1–21. Kissin DM, Boulet SL, Jamieson DJ. Assisted Reproductive Technology Surveillance and Research Team. Fertility treatments in the United States: improving access and outcomes. Obstet Gynecol 2016;128:387–90. American Society for Reproductive Medicine. Access to Care Summit, Washington, DC; 2015. Available at: https://www.asrm.org/globalassets/asrm/ asrm-content/news-and-publications/news-and-research/press-releases-and -bulletins/pdf/atcwhitepaper.pdf. Adashi EY, Dean LA. Access to and use of infertility services in the United States: framing the challenges. Fertil Steril 2016;105:1113–8. Sunderam S, Kissin DM, Crawford SB, Folger SG, Boulet SL, Warner L, et al. Assisted reproductive technology surveillance—United States, 2015. MMWR Surveill Summ 2018;67:1–28. Mascarenhas MN, Flaxman SR, Boerma T, Vanderpoel S, Stevens GA. National, regional, and global trends in infertility prevalence since 1990: a systematic analysis of 277 health surveys. PLoS Med 2012;9:e1001356. Chambers GM, Sullivan EA, Ishihara O, Chapman MG, Adamson GD. The economic impact of assisted reproductive technology: a review of selected developed countries. Fertil Steril 2009;91:2281–94. McLaughlin JE, Knudtson JF, Schenken RS, Ketchum NS, Gelfond JA, Chang TA, et al. Business models and provider satisfaction in in vitro fertilization centers in the USA. J Assist Reprod Genet 2019;36:283–9. Feinberg EC, Westbay L, Hirshfeld-Cytron J, Niederberger CS, Uhler ML. Increasing access to fertility care through creation of a private foundation: the Chicago experience. Fertil Steril 2016;106:e4–5. White L, McQuillan J, Greil AL. Explaining disparities in treatment seeking: the case of infertility. Fertil Steril 2006;85:853–7. Aleyamma TK, Kamath MS, Muthukumar K, Mangalaraj AM, George K. Affordable ART: a different perspective. Hum Reprod 2011;26:3312–8. Reindollar RH. Surfing the waves of change in reproductive medicine: past, present and future. A presentation of the 2014 ASRM Strategic Plan. Fertil Steril 2015;103:35–8. Domar AD, Rooney K, Hacker MR, Sakkas D, Dodge LE. Burden of care is the primary reason why insured women terminate in vitro fertilization treatment. Fertil Steril 2018;109:1121–6. Chandra A, Copen CE, Stephen EH. Infertility and impaired fecundity in the United States, 1982–2010: data from the National Survey of Family Growth. Natl Health Stat Rep 2013:1–18. Feinberg EC, Larsen FW, Catherino WH, Zhang J, Armstrong AY. Comparison of assisted reproductive technology utilization and outcomes between Caucasian and African American patients in an equal-access-to-care setting. Fertil Steril 2006;85:888–94. Seifer DB, Frazier LM, Grainger DA. Disparity in assisted reproductive technologies outcomes in black women compared with white women. Fertil Steril 2008;90:1701–10. Macaluso M, Wright-Schnapp TJ, Chandra A, Johnson R, Satterwhite CL, Pulver A, et al. A public health focus on infertility prevention, detection, and management. Fertil Steril 2010;93:16.e1–10. Mercer’s National Survey of Employer-Sponsored Health Plans 2017. Available at: https://www.mercer.com/newsroom/mercer-national-health-survey-employers-finding-new-ways-to-hold-the-line-on-health-benefit-costgrowth.html.
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ORIGINAL ARTICLE: EPIDEMIOLOGY Creciente acceso a tratamientos de fertilidad a traves de fundaciones privadas. Objetivo: Caracterizar la disponibilidad en el apoyo para el tratamiento de la infertilidad y las diferentes poblaciones atendidas en las fundaciones privadas de Estados Unidos. ~o: Encuesta transversal a traves de la web. Disen Entorno: Fundaciones privadas que brindan asistencia financiera para el tratamiento de la infertilidad. Paciente (s): No aplicable. Intervencion (es): Ninguna. Medida (s) del resultado principal: Geografías y poblaciones atendidas, cantidad suministrada en d olares y alcance de la asistencia financiera proporcionada por las fundaciones privadas para personas que buscan asistencia financiera para el tratamiento de la infertilidad. Resultado (s): Se identificaron 37 fundaciones privadas, 25 respondieron (68% de tasa de respuesta). Mas de la mitad de las fundaciones otorg o subvenciones a personas lesbianas, homosexuales masculinos y transexuales, así como a hombres y mujeres solteros. El cuarenta por ciento de las fundaciones atendieron solo a un estado o regi on geografica. Las fundaciones han otorgado 9.996 subvenciones para el tratamiento de la infertilidad, 1.740 en 2016, con un valor promedio de 8.191 d olares por beca. La fundaci on Livestrong ha otorgado mas del 90% de estas subvenciones, y solo para pacientes con antecedentes de cancer. El doce por ciento de las fundaciones dio asistencia para la preservaci on de la fertilidad en pacientes con cancer, y el 20% proporcion o asistencia para la crioconservaci on voluntaria de ovocitos. Conclusion (es): Las fundaciones privadas aumentan significativamente el acceso al tratamiento de la infertilidad para individuos y parejas afectadas de cancer que de lo contrario no podrían permitirse el tratamiento. Existe una heterogeneidad significativa con respecto a las poblaciones atendidas y los servicios disponibles para el apoyo de estas fundaciones, y el panorama de opciones para los pacientes no afectados por el cancer es muy limitado.
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