Events
Alliance for Fertility Preservation events bring together patients, clinicians, policymakers, and advocates to spotlight the real-world barriers to fertility preservation and to drive practical policy and system changes. Through state-focused policy forums, roundtables, and readouts, we share patient stories, clinical expertise, implementation lessons, and tools that help move coverage from promise to practice.
If you’re a survivor, care provider, policymaker, or organization working on access and equity in reproductive care, these events are a place to learn, connect, and act — whether by attending, partnering, or helping amplify patient voices. Check the Get Involved section for upcoming opportunities and ways to participate.
Readout: AFP’s Ohio Policy Forum
March 11, 2025
Columbus, Ohio
Dr. David Cohn, the interim CEO of the James Cancer Hospital and Solove Research Institute, welcomed attendees and said they were honored to host this important conversation. He indicated that fertility preservation is an essential aspect of holistic cancer care, yet it is often an unmet need. Dr. Cohn noted that the high cost of preservation is a significant challenge for cancer patients and addressing this affordability barrier is a priority at OSUCCC – James.
Becca O’Connor, Director of the American Society for Reproductive Medicine’s (ASRM) Center for Policy and Leadership, said ASRM is proud to support forums like this event because the state-by-state approach is critical. She acknowledged the political climate in Ohio may be challenging, but patients and providers can use their voices to make a real difference that leads to policy change.
Alliance for Fertility Preservation’s (AFP) policy consultant, David Lofye, provided a comprehensive overview of the national fertility preservation coverage landscape, including lessons learned from the eighteen states that have passed legislation to date. He explained that fertility preservation has been considered standard of care for twenty years, and highlighted the Annual President’s Cancer Report published in 2004 that called for insurance coverage. He also noted that despite state fiscal agencies determining the benefit only costs a few cents per member per month, most insurers have not brought their coverage in line with these standards and typically only cover when required by law.
Doug Ulman, Vice Chair of Pelotonia, a Columbus-based community organization that supports cancer research at The James, said he believes we need to advocate for coverage in Ohio because people are counting on us. He acknowledged that Ohio won’t be the first state to pass this coverage, but he challenged everyone in the room to ensure Ohio isn’t the last.
Cancer survivor and Ohioan, Sarah Hagan, shared her personal fertility preservation story. She feels extremely blessed that the health insurance she had through her employer covered her preservation costs. She realizes that’s not always the case for patients and believes that everyone should have the opportunity to pursue parenthood after cancer.
Next, AFP’s executive director Joyce Reinecke moderated a conversation with an expert panel. The panel showcased the world-class medical institutions and care available across the state of Ohio. It included Olivia Frias, an oncology nurse and fertility navigator at Cincinnati Children’s Hospital, Dr. Mindy Christianson, the Chief of Reproductive Endocrinology at the Cleveland Clinic, Mary Caldwell a nurse practitioner at OSUCCC–James, and Mike Scherer, a cancer survivor and founder of Worth the Wait, a Columbus-based nonprofit that provides grants for cancer patients who want to preserve their fertility.
Panelists expressed regret that too many Ohio cancer patients cannot afford to preserve their fertility without insurance coverage. Some believe that conversations about fertility preservation aren’t happening consistently because providers make assumptions that certain patients can’t afford the costs. When the conversations do happen, patients and families often don’t have enough time to raise funds to pay for treatments out-of-pocket. Others felt that incremental progress is being made and we should keep working together.
It was suggested that it’s not fair that fertility preservation isn’t considered medically necessary by insurers when experts have determined it to be the standard of care for more than 20 years. It was asserted that this should be viewed as a justice issue when wigs, prosthetics and breast reconstruction are covered services for cancer patients. Following the panel discussion, the floor was opened to attendees for questions and comments.
Audience members who are leaders in the field of fertility preservation shared their personal and professional experiences with access opportunities and challenges in Ohio. Special concerns around pediatric patients having a right to an “open future” were raised. There was also a robust discussion about the best way to approach the advocacy effort in Ohio. Some expressed the view that Ohio advocates should start by proposing the broadest coverage possible, knowing that compromise is inevitable. Others noted that some laws in other states are not comprehensive and are now subject to efforts to go back and improve the coverage through additional legislation. Interestingly, ways to leverage learnings from other states was considered as a means of turning Ohio’s late adoption of coverage from a deficiency into an advantage.
Overall, there was general consensus that forum attendees and their networks collectively represent a powerful coalition of providers, patients, and nonprofits, and Ohio state lawmakers need to hear about their personal stories and lived experiences to create change.
Forum participants included individual patients and representatives from:
- Alliance for Fertility Preservation
- American Cancer Society Cancer Action Network
- American Society for Reproductive Medicine
- Callahan Murphy Hare Foundation
- Case Western Reserve University
- Chick Mission
- Cincinnati Children’s Hospital Medical Center
- Cleveland Clinic
- EMD Serono
- Ferring Pharmaceuticals
- JustChoice
- Nationwide Children’s Hospital
- Northwestern Medicine
- Ohio Reproductive Medicine
- OSUCCC – James
- Pelotonia
- Quantum Health
- Reproductive Diagnostics, Inc.
- Stefanie Spielman Comprehensive Breast Center
- The Ohio State University
- The Ohio State University Wexner Medical Center
- University Hospitals Cleveland Medical Center
- University Hospitals Seidman Cancer Center
- University of Cincinnati
- Worth the Wait
Readout: AFP’s New York Policy Forum
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
Readout: AFP’s Texas Policy Forum
April 17, 2024
Houston, Texas
Texas State Representative Ann Johnson welcomed attendees and thanked everyone for their advocacy around HB 1649 last session. She urged everyone who cares about fertility preservation to continue speaking out as coverage takes hold and offered to help on HB 1649
implementation moving forward.
Alliance for Fertility Preservation (AFP) executive director Joyce Reinecke provided an overview of the national fertility preservation coverage landscape, including lessons learned from other states that have passed mandate legislation in recent years. Sixteen states, the District of Columbia, the Federal Employees Health Benefit Plan and the Veterans Health Administration all have enacted some form of fertility preservation coverage for their insureds.
Attendees heard a video message from lead bill author Representative Angie Chen Button expressing pride in the passage of HB 1649 and appreciation for the support of advocates across the state.
Chris Britton from GovExperts provided detail on the specifics of the coverage required by the passage of HB 1649. Covered fertility preservation procedures include the collection and preservation of sperm, unfertilized oocytes, and ovarian tissue for cancer patients. He also identified the policies affected by the bill —individual, small and large group commercial insurance regulated by the Texas Department of Insurance, representing 17 percent of the state health insurance market or approximately 5-6 million Texans.
After the presentations, audience questions led to a discussion about those at risk of iatrogenic infertility who are not covered by HB 1649, including sickle cell, thalassemia, aplastic anemia and transgender patients and how to ensure those who lack the benefit aren’t left behind.
Next, Joyce Reinecke moderated a conversation with an expert panel that included Dr. Terri Woodard from MD Anderson Cancer Center, Stephanie Lawrence from UT Southwestern Moncrief Cancer Institute in Fort Worth and Amanda Rice, founder of Chick Mission, a nonprofit that provides grants to cancer patients who want to preserve their fertility. Panelists indicated that they are dedicated to their work in this field, but feel that the out-of-pocket costs are the most significant barrier for patients and the hardest part of this work.
Panelists have seen some increased access since HB 1649 went into effect on January 1, but overall, the outcome has been mixed. There is a general sense that the passage of the law was a positive development, but most working in the clinics and billing departments aren’t exactly sure what it all means. Many are still trying to better understand which health insurance plans are impacted and there is even less knowledge about the bill in community cancer centers compared to academic medical centers.
Most financial counselors don’t have the capacity to do patient appeals and there is often a disconnect between the clinicians and the financial counselors. It’s a difficult process that is very time intensive and unfortunately the burden often lies with the patients who are also dealing with a cancer diagnosis. There was consensus about the need to ensure that charity program grant dollars are only used for patients who don’t have insurance coverage and to hold insurers required to offer the benefit accountable for coverage. A commitment to share tools and resources was identified as a priority, including template letters, insurance code best practices and a database of plan benefit designs and clinical guidelines.
Panelists encouraged attendees to continue to stay engaged because there is still a lot of work to do, including addressing coverage gaps like for those with aplastic anemia and sickle cell. For self-funded plans outside of the scope of this law, advocates can make the case to their own employers about the need to provide benefit. Other ideas were suggested, including working on patient appeals with pro bono attorneys at large law firms and health law clinics at law schools.
Forum participants included individual patients and representatives from:
- Alliance for Fertility Preservation
- Baylor College of Medicine
- CCRM Fertility
- Chick Mission
- Flatwater Foundation
- Houston Assisted Reproductive Technologies
- Leukemia & Lymphoma Society
- MD Anderson Cancer Center
- The Rose
- Rutledge Cancer Foundation
- Shady Grove Fertility Houston
- Texas Children’s Hospital
- University of Texas Medical Branch, Galveston
- UT Southwestern Medical Center Dallas
- UT Southwestern Moncrief Cancer Institute in Fort Worth