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Learn about the mission, options, and coverage issues surrounding fertility preservation for cancer patients. Discover how legislation is working towards achieving coverage.
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Oncology & Fertility Preservation: Access Issues Joyce Reinecke, JD Executive Director, Alliance for Fertility Preservation Iowa Cancer Summit September 25, 2018
My Story • Diagnosed at 29 • Treatment plan: Surgery and chemotherapy • Informed of Risk of Infertility • Married; IVF, froze embryos • Path to Parenthood • Self-advocate to patient advocate
Alliance for Fertility Preservation • 501c3 charitable organization • Professionals in oncology, reproductive endocrinology, research, bioethics, research, reproductive law • Leaders in sub-specialty of fertility preservation ______ Our Mission: To Increase information, resources and access to fertility preservation for cancer patients and the healthcare professionals who treat them.
Defining the Issue Fertility Preservation • The process of saving or protecting eggs, sperm, or reproductive tissue so that a person can use them to have biological children in the future. I·at·ro·gen·ic[īˌatrəˈjenik] • relating to illness caused by medical examination or treatment. Iatrogenic Infertility • An impairment of fertility by surgery, radiation, chemotherapy or other medical treatment affecting reproductive organs or processes.
Who needs fertility preservation? • 140,000+ cancer patients diagnosed in reproductive years (up to 45) • Approx 25% of breast cancer patients • 12,000 pediatric patients • Risk is treatment-based; risk spans all cancer types • More than 2.5 million cancer survivors are in their childbearing years • Others at risk: • Autoimmune diseases, sickle cell, genetic conditions • Screening for hereditary diseases, e.g., BRCA • Prior to prophylactic surgery, e.g., oophorectomy; hysterectomy • Transgender patients, prior to transition • Studies: • Top concern for AYA patients • Associated with depression, lower Q of L • Leads to sub-par treatment decisions
What are the options? Men • Sperm banking (standard) • Sperm extraction, electroejaculation Women • Egg & embryo freezing (standard) • Ovarian tissue freezing (experimental) • Ovarian shielding, ovarian transposition, hormonal suppression Pediatrics • Ovarian or testicular tissue banking (experimental)
Coverage Denial Patient J.H., breast cancer, 34 yrs. old Illinois Plan, IVF coverage included You asked for coverage of retrieving and freezing your eggs. You asked for this because you have cancer and will start chemotherapy. You may want to get pregnant in the future. . . . This . . . treatment is not covered unless you have been trying to get pregnant for 12 months without any form of birth control. It would also be covered if you are infertile after your chemotherapy. . . . You do not meet the definition of infertility. The service is therefore not covered.
Structuring Coverage • 16 states have infertility mandates • Employers/self-insureds with infertility coverage • Federal legislation = WHCRA model • NBGH/NCCN Recs on cancer coverage
Amending existing infertility coverage 2nd state, July 5, 2017 Existing IVF mandate Added in coverage in cases of “medical necessity” Health insurance contracts -- Infertility. (a) Any health insurance contract, plan, or policy delivered or issued for delivery or renewed in this state, except contracts providing supplemental coverage to Medicare or other governmental programs, which includes pregnancy related benefits, shall provide coverage for medically necessary expenses of diagnosis and treatment of infertility for women between the ages of twenty-five (25) and forty-two (42) years and for standard fertility preservation services when a medically necessary medical treatment may directly or indirectly cause iatrogenic infertility to a covered person.
Amending cancer care coverage The Women’s Health and Cancer Rights Act (1998) Deemed breast reconstruction as medically necessary part of treatment for breast cancer Amended ERISA REQUIRED COVERAGE FOR RECONSTRUCTIVE SURGERY FOLLOWING MASTECTOMIES. (a) In General.--A group health plan, and a health insurance issuer providing health insurance coverage in connection with a group health plan, that provides medical and surgical benefits with respect to a mastectomy shall provide, in a case of a participant or beneficiary who is receiving benefits in connection with a mastectomy and who elects breast reconstruction in connection with such mastectomy, coverage for-- (1) all stages of reconstruction of the breast on which the mastectomy has been performed; (2) surgery and reconstruction of the other breast to produce a symmetrical appearance; and (3) prostheses and physical complications all stages of mastectomy, including lymphedemas; in a manner determined in consultation with the attending physician and the patient.
Administrative Challenge Administrative challenge using external appeals process Assisted patients filing IMRs w/ CA’s DMHC Result: Unanimous overturns of denials DMHC has now recognized coverage ASRM issued bulletin May 14, 2018
IMR Example “The reviewer determined that the services at issue were medically necessary for treatment of the patient’s medical condition. Therefore, the Health Plan’s denial should be overturned.”
Voluntary Coverage Cryopreservation. Gamete cryopreservation (sperm or oocytes) is allowable when it is determined by appropriate health care professionals that the care is needed to promote, preserve, or restore the health of the individual and is in accord with generally accepted standards of medical practice (e.g., for oncofertility with cryopreservation of gametes to preserve fertility prior to cancer treatment which would ordinarily render the patient permanently sterile).
Arguments for Coverage • Fertility Preservation is Medical Necessity • Treatments are Standard of Care • Promotes Better Medical Outcomes • Low Cost & Potential Cost Offsets • Ethical Bases for Coverage
1. FP is Medically Necessary Required for coverage FP not “elective” – patients are facing sterility Only means to safeguard ability to have genetic children “In the United States, the concept of “medical necessity” continues to serve as the primary gatekeeper for the utilization of health care services. [It is used] to distinguish not only necessary from unnecessary care but also medical from cosmetic, experimental, elective . . .[to] ensur[e] that patients receive treatment that is appropriate and medically indicated while also controlling costs. At the same time, the concept’s meaning remains elusive.”
Fertility Concerns Affect Treatment Decisions Fertility concerns negatively affected tamoxifen initiation & adherence In premenopausal women: 1/2 had concerns 1/3 influenced treatment choices Authors recommended FP as way of addressing
5. Ethics Arguments “Therefore, females are facing costs for preserving fertility that are more than 28–35 times that faced by males.” “[CA Bill] is expected to decrease the gender disparity by reducing females’ financial burden of fertility preservation services.” Remedy iatrogenic harm Status quo (non-coverage) has a disparate impact on certain groups: Women Lower socio-economic population Procreation as a “fundamental” right Other groups asserting right to this technology Same-sex couples, transgender, single women, those w/ genetic disease
Victoria, Hodgkin Lymphoma, 25 My 28 yr old sister received her cancer diagnosis 6 months before I received mine. I was just 25. For anyone who has been dealt the crushing blow of being told you have cancer, I do not need to emphasize the resilience it requires to remain hopeful, to keep your eyes on the future. When I was diagnosed, I was given less than a week to discuss my options with my husband, a newly arrived immigrant from West Africa, whose culture marks marriage with the ability to expand the family tree. We met with a fertility specialist who told us that we would need to begin immediately – and come up with $15,000 in cash by the next day. We were told that fertility preservation was not part of my health care plan’s coverage. The process was disorganized and left me feeling that I did not have a choice. I now have to watch as chemotherapy drugs are pumped into my body, knowing that they are killing my cancer, but could be destroying my chances of having a child. I can say with all sincerity that is what keeps me up at night.
Get Involved! Support State & Federal Legislation Join local and national coalition efforts Provide individual/expert support Meetings with legislators Letters/emails/calls Secure institutional support/Memos Participate in coalition activities, hearings, lobby days Share patient stories Other Outreach Appeal - Help patients challenge denials of coverage Ask employer/HR to add FP coverage Private Outreach: Insurance Companies, Gov’t agencies, etc. BE AN ADVOCATE! LEND YOUR VOICE!
