Fertility Preservation: Improving access to fertility preservation through nurse-advocated financial assistance

Abstract

Many young adult (YA) cancer patients and survivors experience financial toxicity, which can negatively impact their quality of life and psychosocial well-being. YA patients and survivors may also face impaired fertility or infertility as a result of their cancer treatment, and this too is a source of concern, as many survivors will need costly assisted reproductive technology in order to build their families. Fertility nurse specialists (FNS) can play a role in alleviating the distress associated with the co-occurrence of financial toxicity and impaired fertility/infertility. Herein, we describe a nurse-led onco-fertility program that offers counseling to patients of any age, with any diagnosis, and at any stage of treatment. Fertility nurse specialists engage with a network of reproductive endocrinologists providing discounted services and connect patients and survivors with resources to lessen the financial burden associated with family building post-cancer treatment.

Introduction

Young adult cancer patients and survivors (18–40 years) experience financial toxicity at higher rates than their older counterparts (Guy et al., 2014; Keegan et al., 2012). Cancer diagnosis and treatment during young adulthood may delay or preclude developmental transitions and milestones, which can impede educational and career advancement and thus potentially limit long-term earnings and financial outlook (Fardell et al., 2017; Guy et al., 2014; Parsons et al., 2012). This financial toxicity has been shown to have a negative impact on young survivors’ quality of life and psychosocial well-being (Thom & Benedict, 2019; Zafar, 2016).

Cancer treatment may also impair fertility or leave patients infertile, and this too is a source of distress for patients (Benedict, Thom, et al., 2018; Gorman, Su, Roberts, Dominick, & Malcarne, 2015). Patients who opt to preserve fertility before treatment or try to build a family after treatment using assisted reproductive technology [e.g. in vitro fertilization (IVF), gamete intrafallopian transfer (GIFT), intracytoplasmic sperm injection (ICSI), etc.], adoption, or surrogacy can face substantial associated costs (Benedict, McLeggon, et al., 2018). In the US, these costs range from $40,000-$60,000 per live birth using IVF, $15,000-$50,000 for adoption, and $100,000-$150,000 for surrogacy (Devine et al., 2015; Gateway, 2016; RESOLVE The National Infertility Association, 2006).

Patients have reported a clear, consistent need for counseling related to fertility, and financial costs and implications should be a component of such discussions (Deshpande, Braun, & Meyer, 2015). Previous research has suggested that oncology nurses recognize the importance of fertility-related discussions but report a lack both of general onco-fertility knowledge and the tools to initiate fertility-related discussions (Keim-Malpass et al., 2018; Nobel Murray, Chrisler, & Robbins, 2016; Wright, Norton, & Geary, 2018). Specialized training programs, including the ENRICH program (Educating Nurses about Reproductive Issues in Cancer Healthcare), have been created to provide nurses relevant education and to train nurses to facilitate these discussions through communication skill-building (Vadaparampil et al., 2016). Such training, as well as the development of a fertility nurse specialist (FNS) role, can help alleviate the distress associated with the intersection between financial toxicity and impaired fertility (Hendershot et al., 2016; Kelvin et al., 2016).

Foundational Components

The Cancer and Fertility Program at Memorial Sloan Kettering Cancer Center provides FNS counseling to patients of any age with any diagnosis and at any stage of their treatment. The FNS team is comprised of advanced degree nurses who have educated themselves through online coursework, attendance at national meetings of relevant professional organizations, maintaining familiarity with recent research, and establishing collegial relationships with local reproductive endocrinologists and oncologists. The team of FNSs counsel patients prior to the start of treatment to help them understand the potential risk to their fertility as well as available fertility preservation options. Similarly, the FNS team helps patients who have completed treatment, regardless if they have previously frozen egg or sperm, to consider their options for building a family. Counselling takes place in person or by phone call and generally lasts from 30–60 minutes. Acknowledgement of the financial costs of fertility preservation and family building is an integral part of each of these counseling sessions. The FNSs realize that associated costs can pose a hurdle, at best, and prohibit fertility preservation, at worst, for most patients seeking intervention.

Within the structure of the Cancer and Fertility program, the FNSs utilize several initiatives to help ease the financial burden of fertility preservation. First, we have established relationships with reproductive endocrinologists and sperm banks in the region who have agreed to provide their services at discounted rates to patients who have a diagnosis of cancer. Although patients are free to choose any center with which they are comfortable, we also offer a list of the centers that have discounted rates. During the fertility counseling session, we share pricing information on the cost ranges in a clear, direct manner, so there is no misunderstanding. A written referral is sent to the reproductive endocrinologist for each patient prior to their initial consultation. Current insurance information is included in this referral so that the center can investigate coverage and provide the most accurate projection of costs from the outset. Finally, also integral to the consultation, the FNSs describe programs that might provide discounted rates or free medications, such as the LIVESTRONG Foundation and the Heartbeat Program developed by Ferring Pharmaceuticals and Walgreens Specialty Pharmacy. For male patients who cannot afford the cost of sperm banking, our hospital has philanthropic funds to cover the initial fee.

At the policy level, the FNS team has worked to make fertility preservation more accessible to our patients by lobbying for mandated insurance coverage. With the recent passage of fertility preservation legislation in April 2019, New York became the sixth state to mandate fertility preservation coverage for patients facing iatrogenic infertility joining Connecticut, Delaware, Illinois, Maryland, and Rhode Island.

Case Studies

The following case studies illustrate both the financial struggles that many young patients experience and the range of financial supports that the FNSs attempt to provide through counseling. Detailed information on the financial support services mentioned can be found in Table 1.

Table 1.

Financial Resources for Young Adult Patients and Survivors

Source	Description	URL
CancerCare	Helps with treatment-related costs such as transportation, home and child care as well as insurance co-payments to cover the cost of chemotherapy and targeted treatments.	http://www.cancercare.org
Patient Advocate Foundation	Serves as an active liaison between the patient and their insurer, employer, and/or creditors to resolve crisis matters as they relate to their diagnosis. Their Co-Pay Relief Program provides direct financial assistance to insured patients to help them pay for the prescriptions and/or treatments they need. They also provide small grants to patients who meet financial and medical criteria. Scholarship for Survivors Program offers educational scholarships to individuals who have suffered a life-threatening disease or a chronic condition.	http://www.patientadocate.org
Team Maggie for a Cure	Provides financial assistance to young women and men who are receiving treatment for cancer for the purpose of preserving eggs and sperm.	http://www.teammaggieforacure.org
Cancer Finances Toolkit	Helps patients navigate finances after cancer whether newly diagnosed or past active treatment.	https://cancerfinances.org
The Samfund	Provides support to young adults who are struggling financially because of cancer through direct financial assistance and free online support and education.	http://www.thesamfund.org
Hope for Young Adults with Cancer	Provides direct financial support to young adults who are currently in treatment or in remission for up to five years.	http://www.hope4yawc.org
LIVESTRONG Foundation	Offers help in managing medical expenses and insurance questions as well as access to discounted fertility preservation services and free medication.	https://www.livestrong.org
HealthWell Foundation	Assists underinsured persons with copays, premiums, deductibles and out of pocket expenses.	https://www.healthwellfoundation.org
Heart Beat Program	Developed by Ferring Pharmaceuticals and Walgreens Specialty Pharmacy, provides select fertility medications at no cost to patients pursuing fertility preservation services prior to cancer treatment.	https://www.walgreens.com/images/adaptive/pharmacy/pdf/Heart_Beat_program_Brochure_20180223.pdf
Ulman Foundation	Helps young adults continue their education after their own cancer diagnosis or the diagnosis of a parent, sibling or spouse, through a college scholarship program.	https://ulmanfoundation.org/scholarships
Repro Tech Ltd./Verna’s Purse	Provides affordable and cost-effective options for long-term embryo storage. Verna’s Purse is a financial assistance program offered at Repro Tech, Ltd., to cancer survivors who face economic challenges.	https://www.reprotech.com; https://www.reprotech.com/verna-s-purse.html

1. John is a 23-year-old male who has been diagnosed with B cell Acute Lymphoblastic Leukemia, with a treatment plan that includes a chemotherapy that has a high probability of impacting fertility. He has recently become engaged but does not plan to have children for 5–10 years. The FNS explained that sperm banking is the fertility preservation option recommended and advised he make three collections that are spaced 2–5 days apart. The FNS provided the names and rates at several sperm banks that are both close to his home and that have agreed to provide discounted rates to patients with a diagnosis of cancer. The initial fee of $700 includes the analysis and freezing of three collections as well as the first year of storage. Annual storage after the first year is $450. Since he does not intend to use this sperm for many years, the FNS let him know that after the first year, John could consider moving his sperm to a long-term storage facility such as Repro Tech, Ltd. Not only would this provide him a lower annual rate but also give him access to a financial assistance program called Verna’s Purse for cancer survivors who qualify.

2. Laura is a 32-year-old female who had been diagnosed five years ago with ER+ invasive ductile breast cancer, with a treatment plan that included surgery, chemotherapy and hormone therapy. She is married, G1P1, and had been able to freeze embryos prior to the start of treatment at a reproductive endocrinology center recommended by the FNS. This center had previously agreed to provide discounted rates to patients who have a diagnosis of cancer. At that time Laura had applied to the LIVESTRONG Foundation and Heartbeat Program and was able to receive many of the medications she needed during stimulation for free. Laura would now like to consider taking a break in her hormone therapy to use her frozen embryos to attempt pregnancy. Again, she was encouraged to seek treatment at the center where her embryos are stored as the care needed to now attempt pregnancy would be provided to her at a discounted rate. Her updated insurance information was forwarded to the REI to be vetted for possible coverage. After this consultative visit Laura found that the costs associated with embryo transfer ($4000-$5000) are prohibitive for her since her recent illness and treatment have left her unable to work full time. The FNS told her about the Samfund, an organization that might provide financial assistance to her as a young adult cancer survivor as she works to build her family.

Implications for Nursing Practice

• In counselling patients, be aware of the risks that treatment can pose to their fertility as well as potential fertility preservation options that may be available to them. Be transparent about associated costs, both those that would be incurred now to freeze eggs and sperm as well as those to be expected in the future to attempt pregnancy.

• Assist patients to navigate the intricacies of applying for fertility preservation financial assistance, including qualification guidelines, applications, letters of medical necessity, and physician approval.

• Stay up-to-date with resources that may provide financial assistance to patients. Similarly, stay current with fertility preservation costs at centers your patients may choose to utilize. Pricing, discounts, and insurance participation can change, resulting in shifting options for patients as they make these life-changing decisions.

Conclusion

Young adult cancer patients and survivors have ranked family building after treatment as one of the most important aspects of quality of life, and it is vital for healthcare providers to offer patients the resources they need to make informed decisions about their fertility (Zebrack, Casillas, Nohr, Adams, & Zeltzer, 2004). Although oncology centers may not have nurses whose sole function is to address fertility-related issues with patients, all oncology nurses have a responsibility to address these concerns. Professional organizations, including American Society of Clinical Oncology and the National Comprehensive Cancer Network, have published clinical practice guidelines to assist oncology professionals in discussing this topic (Coccia et al., 2014; Loren et al., 2013). In collaboration with physicians and other healthcare providers, nurses should make sure that patients are aware of the risk that treatment can pose to fertility and assess their interest in future family building. They can provide a list of local reproductive endocrinologists and sperm banks along with associated costs. Discussions should be initiated early in the care trajectory so that fertility preservation can be completed before treatment begins. These timely discussions by both office practice and chemotherapy nurses will ensure that patients are able to make educated choices, consider the financial implications, and experience no regret relating to fertility and family building.