September 10, 2024
New York City
On September 10th, the Alliance for Fertility Preservation (AFP) held its second policy forum on fertility preservation coverage. The focus was to examine the impact of the coverage law that took effect in New York on January 1, 2020 and established coverage for those at risk for iatrogenic infertility. The purpose of the event was to bring together invited stakeholders – clinicians, patients, lawmakers, policy experts, and nonprofit leaders – for a discussion of how and whether the new coverage is working to improve access for patients.
Glenn Schattman, MD, AFP Board Chairman, welcomed attendees to the forum, and thanked the American Society for Reproductive Medicine (ASRM) for its grant that made the event possible. He then introduced Sean Tipton, ASRM’s Chief Advocacy and Policy Officer. Mr. Tipton lauded the group on achieving fertility preservation coverage in New York State, and he reaffirmed ASRM’s ongoing commitment to fertility preservation and IVF coverage efforts across the country, particularly at this moment when reproductive services are under threat.
Next, New York State Assemblymember Alex Bores spoke. He congratulated forum attendees for their collective effort to pass fertility preservation coverage for cancer patients; he also described his legislation which would expand the coverage to New Yorkers on Medicaid, who currently do not have coverage for medically-indicated fertility preservation services.
Jennifer Georges, a cancer survivor living in New York, then shared her personal story. She described the angst she endured in figuring out how to pay for fertility preservation at the time of her diagnosis, and how the New York insurance coverage helped ease her financial burden when she needed fertility services after surviving cancer to have her son.
Alliance for Fertility Preservation (AFP) executive director, Joyce Reinecke, along with forum project lead, Ella Crowther, then gave a short presentation. They began with a brief history of the law; explained the insurance policies affected; and outlined the scope of the covered services. They noted that the law applies to the approximately 3.5 million New Yorkers who have individual, small or large group health insurance plans that are regulated by the state, and that it does not include a key population – 6.9 million Medicaid enrollees.
After the presentation, a moderated discussion commenced. Ms. Reinecke called on invited experts to speak to particular aspects of the coverage, with feedback provided by attendees. The overarching sentiment was that the law had expanded access for patients, but that many knowledge and coverage gaps remain. Better quantitative data concerning statewide utilization
including demographic, geographic, clinic-specific, and insurer-specific information is needed for a more fulsome evaluation of the law’s impact.
While expected trends such as an increase in overall utilization and reduced demand for financial assistance emerged, only limited evidence supporting these trajectories was available. For example, internal data provided by one leading fertility clinic showed growth in both the number of fertility preservation patients and the percentage of those patients paying through insurance versus out-of-pocket post-mandate.
In addition, leading financial assistance programs (The Chick Mission, Livestrong, and Heartbeat) shared some of their pre- and post-mandate data. While The Chick Mission continued to experience high demand even since 2020, both The Chick Mission and Livestrong reported significant increases in applications from Medicaid patients; the Heartbeat program saw a steady decrease in demand in New York following the mandate. While these shifts may reflect more patients paying for services through insurance rather than charity programs as well as more Medicaid patients relying on financial assistance, other factors (such as the law taking effect at the start of the pandemic) might also be at play, so additional analysis is warranted.
A general lack of clarity around which policies are subject to the mandate along with insufficient capacity to pursue appeals to denials were obstacles raised in the discussion. There was agreement that the inherent complexity of the health insurance system hampered the ability to counsel and set appropriate coverage expectations with patients. Suggested strategies included appointing a dedicated financial navigator with knowledge of coding and claims processing, and obtaining benefits verification prior to meeting with patients.
Attendees were enthusiastic about establishing a coalition of New York stakeholders to continue the discussion, share practical solutions, and pool and create resources toward better implementation of the law. In addition, attendees were encouraged to remain in contact with Assemblyman Bores’s team to alert them to issues with the current coverage and to support his Medicaid bill.
The forum concluded with moving words from cancer survivor, Emma Schlamm, who, despite being diagnosed and treated in New York, was not eligible for the new coverage. She described paying out-of-pocket and going through a laborious appeals process to get reimbursed by her California-based plan. Despite this, she expressed deep gratitude for being able to undergo fertility preservation, as she is newly married and looking to start a family.
Forum participants included individual patients and representatives from:
Alliance for Fertility Preservation
American Cancer Society Cancer Action Network
American Society for Reproductive Medicine
Cervivor
Circle Surrogacy
Columbia University Irving Medical Center
EMD Serono
Ferring Pharmeceuticals
Hackensack University Medical Center
Hoboken Strategy Group
Kindbody
Leukemia and Lymphoma Society
Livestrong Foundation
Maia Oncology
Memorial Sloan Kettering Cancer Center
Neiswanger Institute for Bioethics, Loyola University Chicago
New York State Assembly
NYU Grossman School of Medicine
NYU Langone Health-Perlmutter Cancer Center
Office of Assemblymember Alex Bores
Progyny
Redshift Technologies, Inc.
RESOLVE: The National Infertility Association
Stupid Cancer, Inc.
Sunray Fertility Law
Susan G. Komen
The Breasties
The Chick Mission
Weill Cornell Medicine