Despite the increasingly disturbing news stories that many of us are feeling bombarded with- there are points of light that are more than magnificent, more than illuminating, more than uplifting – they are a soul-drenching relief.
There are heroes out there, some of whom would be astonished to hear themselves referred to in that way. You may be one of them.
I have the pleasure to share a story of one woman whose story can only be seen as heroic. The sole voice of argument against that term might be her own, but I’ll let you decide for yourself.
What can one woman do?
More than we realize. And even as Elizabeth Warren was being shut down, one woman, not so quietly, rose up.
In July 2015, Melissa Thompson gave birth to a healthy, beautiful baby girl named Poppy. Melissa was getting used to being a first-time mom – often basking in its glory, but also feeling the trials and tribulations of new motherhood that we all face.
Within days of giving birth to her daughter, like many, Melissa had trouble breastfeeding. Diagnosed with mastitis, Melissa was prescribed an antibiotic. After three courses of failed antibiotics her Ob/Gyn suggested she get an ultrasound.
5% of women with breast cancer are under the age of 40.
Unfortunately, Melissa learned that she was among them. What was thought to be mastitis was actually tumors blocking milk ducts. Getting a diagnosis of Stage III breast cancer, at her age of 32, was shocking. And frightening. And many other feelings. The feelings though, were relatively less important than attending to the decisions that she needed to make, almost immediately. The window of time in which she had to consider options and investigate other ideas was tiny. Decisions needed to be made and they needed to be made quickly.
Facing life and death decisions is frightening enough, making an action plan at the same time feels surreal.
And this was literally a life and death decision that needed to be made. Not a life or death. A life and death decision.
Hearing that a double mastectomy followed by chemotherapy was her best option, to survive and raise her child was only one part of the equation. The other side of the equation was a life and death choice about family building.
Considering fertility preservation was squarely on the life side. In her situation, taking medications to develop more eggs than usual in a single reproductive cycle and then having them surgically retrieved and cryopreserved, would not reduce her chances for a full recovery from cancer.
But choosing not to retrieve eggs and either fertilize them, create embryos and freeze them or freeze the retrieved eggs would be the end, the death, of any future children or family building. The vigorous and effective chemotherapy agents that could save her life from cancer would likely take away her ability to have more children.
She made the choice for life. Hers and the possibility of a baby in the future.
Stimulating ovaries, retrieving eggs, and freezing them is an accepted, reliable fertility treatment protocol. They are the first steps of the in vitro fertilization (IVF) process and have been used effectively for over three decades for family building. The scientific and medical technology concerning egg freezing has advanced enough in the last several years to also be considered a highly effective fertility preservation treatment. (Five years ago, in 2012, the American Society of Reproductive Medicine (ASRM) removed the “experimental” label on egg freezing.)
Melissa called her insurance company, found out that she had insurance coverage, (luckily, as the out of pocket expenses just for the beginning stages of egg freezing could be upward of $10,000), just as she was supposed to, got a pre-authorization code, just as she was supposed to and went on to plan for her life after cancer.
Egg retrieval and then a double mastectomy. Within days of each other. With a six week old infant at home.
Sounding heroic yet? And this is just the very beginning of her story.
Melissa was brought to my attention by two colleagues in the field, Davina Fankhauser of Fertility Within Reach and Kate Weldon LeBlanc, Director of Resolve New England.
Because we’re fertility advocates. Not lobbyists. Advocates. And she knew we could help.
Here’s what one woman can do. When she persists. And when she rallies support from those who can help.
Melissa worked with her local representatives to introduce and support a bill that ensured that insurance companies had to cover fertility preservation[L1] .
Why did she do that? Because three days before a double mastectomy, the night before the egg retrieval, Melissa’s insurance company called to reverse their prior authorization once they realized that she had cancer. Her insurance company denied coverage because the treatment wasn’t based on infertility, rather fertility preservation, leaving her with unexpected bills upwards of $10,000.
Shaking your head?
The short sightedness of this pronouncement left some of us literally speechless. But not for long.
The fact, real and absolute fact, that as soon as she had the surgery and was exposed to life-saving but fertility-destroying medications, she would be considered infertile is one reason for the disbelief. Her impending infertility was evidently not deemed compelling enough to consider a prophylactic fertility preservation protocol necessary, despite her physicians deeming it medically necessary and arguing on her behalf.
Melissa went through it all – the egg retrieval, the surgery, the medication treatments.
I was introduced to her a year later, three days before she was to present testimony before the House of Representatives in Connecticut.
How on earth did she get here? Melissa missed the insurance company’s appeals window, as her chemotherapy treatments rendered her neutropenic and bound to an inpatient setting. She worked with state offices to get to the bottom of the issue – with no success.
Finally she reached out to here local Representative, Caroline Simmons. She realized that there had been a bill introduced in the last two legislative sessions to protect cancer patients from fertility preservation carve outs, but those bills had failed.
Melissa investigated what the actual costs would be for each tax payer in the state of Connecticut to support fertility preservation treatments for each person who needed them. Taking all the different variables into account, (age of person undergoing cancer treatment, whether they had completed building their families, the difference in cost in freezing eggs compared to freezing sperm, how often a cancer treatment diagnosis and protocol would affect fertility, etc.).
Melissa created a balanced presentation, presenting her testimony based on her personal story, but then broadened to include the scope of all patients who had to make the same choices, suffer the same hardships and be subject to increased financial toxicity when they needed to concentrate on surviving. Her commentary was based on well-thought out research, backed by credible data sources to include the larger picture. Melissa went beyond her personal story, beyond the pain felt by patients, but reasoned through the affect a policy change would have on insurance companies and tax payers. Aside from catching a significant error in the previous cost analysis, Melissa’s testimony elicited an enlightened response from around the table.
Women May Consider Less Toxic and Less Effective Treatment to Preserve Their Fertility
Melissa responded to a question confirming that cancer patients, women in particular; breast cancer patients in particular, will consider less toxic (and less effective) treatment in order to preserve their fertility, had they not gone through preservation prior to treatment. State Representative Matthew Lesser responded,
“So that could potentially worsen outcomes or increase costs? I think the question of whether this has any cost at all is a valid one and I don’t believe that is reflected in the FOA analysis from prior years and something we should consider.”
State Representative Jonathan Steinberg added, “I think you have introduced the idea of opportunity costs and trade-offs… You make a very compelling case that we should be considering the cost [that people] might incur should they be foreclosed from certain options. To Representative Lesser’s point, risking poorer outcomes in order to preserve one’s ability to have children is a very interesting point as well. Your presentation has been an eye-opener as to what we should be thinking about when we think about a lot of these coverage issues.”
Heroic would have been living through this and being a sane, whole person. Heroic would have been contacting your representative, finding a bill to support, testifying about our own personal story. (Do you even know who your representative is? No shame, many of us don’t).
Melissa’s version of heroic was to present costs, data and information too relevant and too important to ignore.
Melissa’s version of heroic was to sit in Hartford, while the winter storms raged around us, for hours, watching others testify, seeing how some of them were treated rather harshly and finally take her turn. Heroic is entering the room with 3 partisan sponsors of the bill and leaving the room with many more bi-partisan co sponsors.
And this story is not over. Not by a long shot. Dr. Joshua Hurwitz, from Reproductive Medicine Associates of Connecticut (RMACT) went with Melissa to the Legislative Building in Hartford and had a closed door session with high ranking representatives. Dr. Hurwitz gave compelling information on the financial, physiological and emotional costs of making decisions when presented with a cancer diagnosis and having to consider future family building at the same time. He brought up that women will consider more invasive surgical procedures to have less medical agents used and that this is less cost effective, not more. He spoke passionately about having “a gun held to your head” to have a patient try to make these life saving decisions and family decisions at the same time.
The fight continues.
What does it matter to you what gets decided if you live in Idaho or Arkansas? Policy sets precedent. What happens here will matter all over the country.
Melissa’s illness and her response to her illness is already affecting conversations on a high level in the government. And it matters.
Because ultimately, for those of us privileged enough to have children, there’s very little we wouldn’t do for them. Or to have them.
Melissa’s ultimate message? You shouldn’t have to sacrifice your ability to have a family to survive. Not when there’s medically appropriate alternatives.
Melissa Thompson. The story of a hero.