Your Future Matters

by Elizabeth Goodchild

My name is Elizabeth, and I am an oncofertility nurse at Massachusetts General Hospital working with adolescents and young adults facing life-threatening illnesses. I work closely with patients and families to help them navigate fertility preservation options before starting treatments that may cause infertility. I coordinate with oncology and reproductive specialists, so that young people have the opportunity to preserve their future family-building options before treatment begins. 

Massachusetts has long been a national leader in health equity. Yet when it comes to protecting the future fertility of young patients facing life-saving medical treatment, a serious gap remains. In Massachusetts, commercial health insurance plans are required to cover fertility preservation for patients undergoing treatments that threaten fertility, but MassHealth (the state health insurance plan) does not. This creates a clear and troubling inequity: young patients with private insurance can protect their ability to have biological children in the future, while many patients insured through MassHealth cannot. 

S.788/H.4555, An Act to Improve Sickle Cell Care offers the Commonwealth an opportunity to close this gap by expanding access to fertility preservation services for patients insured through MassHealth. This would ensure that access to standard medical care does not depend on the type of insurance a patient has. While the bill is focused on improving care for people with sickle cell disease, the fertility preservation provision would benefit any MassHealth patient facing treatments that threaten fertility. That would include young people undergoing chemotherapy, radiation, or stem cell transplants for sickle cell, cancer and other serious illnesses. These treatments that can cure diseases but often cause permanent infertility. These conversations are some of the hardest in medicine. 

Recently, I was asked to contact a 16-year-old girl preparing for a stem cell transplant. When I  opened her chart and saw that she was insured by MassHealth, my heart sank. I knew immediately that the conversation would be different. It wasn’t because her medical needs were different, but because her insurance might limit access to something commercial insurance in Massachusetts already covers. It is devastating to explain to a teenager that while medicine has ways to protect their fertility, they may not be able to afford them simply because of the insurance they have. 

This inequity affects thousands of young people in our state. MassHealth covers more than 2 million Massachusetts residents. Nearly half of Massachusetts children rely on MassHealth for their health coverage. That means many of the young patients most likely to face serious illnesses in childhood or young adulthood are precisely the ones who lack access to fertility preservation. The result is a two-tiered system. Patients with commercial insurance can preserve their fertility before treatment begins. Patients with MassHealth often cannot. 

In my office, I have watched teenagers cry when they learn this. Many are not even sure whether  they want children someday. They are 17, 18, 19 years old. What overwhelms them is the unfairness and the realization that the choice might be taken away before they are even old enough to make it. Illness already takes so much from young people. It should not also take away their ability to imagine a future.

Fertility preservation is not experimental or elective. It is standard medical care. Leading medical  organizations, including the American Society of Clinical Oncology and the American Society for Reproductive Medicine, recommend that all patients of reproductive age facing treatments that threaten fertility be counseled and offered fertility preservation before treatment begins. These guidelines recognize fertility preservation as part of the standard of care. 

The need is only growing. Advances in treatments, including curative stem cell transplants are allowing more patients to survive serious illnesses. But those treatments frequently cause  permanent infertility. Survivorship must include the possibility of a full life after treatment. 

For many patients, the ability to imagine future relationships, families, and long-term goals is essential to resilience during treatment and mental health afterward. Denying fertility preservation sends a damaging message: that survival is enough, and that their long-term quality of life matters less. 

Massachusetts has already recognized the importance of fertility preservation by requiring coverage in commercial insurance plans. Bill S.788/H.4555 simply ensures that patients covered by MassHealth are not left behind. Health equity means access to medically necessary care should not depend on income or insurance type. No young person should lose the chance to build a family simply because of the insurance card in their wallet. 

Passing Bill S.788/H.4555 would send a powerful message to patients with sickle cell disease, cancer, and other serious illnesses: your future matters, your family matters, and YOU matter.