advocacy, experience, reflection

A Word – Or, Many – On Roe and Cancer.

Hi Squad.

It’s been a while since I’ve posted here, mostly since my treatment has been stable (thank goodness) and I’ve been doing what chronic cancer patients dream of doing: living. However, I’m not speaking about just myself today. This is far more important.

The impact of the overturn of Roe vs. Wade on the cancer community cannot be overstated. While there are many lenses through which one can examine this issue, I am choosing to share it through my own cancer experience and those of my community.

To quote Dr. Elonora Teplinsky, a medical oncologist at Valley Hospital in New Jersey, “cancer during pregnancy occurs approximately once per 1,000 pregnancies annually… While many cancer treatments can be safely done during pregnancy, many cannot be such as chemotherapy during the first trimester (and certain chemo agents during the whole pregnancy), radiation, endocrine therapy, and some targeted therapies. The SCOTUS decision will affect our ability to give necessary treatments for the health and life of the mother.” (Source). 

In short, the upending of Roe means that women facing cancer who become pregnant will die. Not all of them. But many. The law is so unclear that most medical providers not making abortion accommodations for cancer care. As a recent NPR interview summarized, “Dr. Lisa Harris is an OB-GYN at the University of Michigan who’s been working on a task force to prepare for the possibility that the state’s 1931 abortion ban takes effect. That law would make abortion a felony except, quote, ‘to preserve the life of the pregnant woman.’ She says that language is incredibly unclear… Sometimes pregnancy hormones make cancer spread faster, or treatment isn’t safe to start during pregnancy. If abortion is not an option for patients in this situation, they may have to carry their pregnancy to term and delay crucial treatment… That might mean their cancer is more serious and more widespread than early in the pregnancy, and so they may indeed have a higher risk of dying, but it’s not a risk that’s going to happen immediately and might be a recurrence in months or years.” (Source: NPR).  In an article in the Houston Chronicle, one woman named Sarah Morris shared her story which falls in this situation. She was diagnosed with cervical cancer at 10 weeks pregnant, and while she wants the baby, she is in fear of her life. “Though the law makes an exception for medical emergencies, Morris said her doctor told her its definition leaves a lot up to interpretation, so she would perform abortions only on patients who were bleeding out or in other obvious life-or-death situations.” You can read that full article here

In addition to the loss of bodily autonomy and a constitutional right, it puts so much else up next: including fertility treatments. There are already states with “trigger laws” in place, where the law defines that life begins at conception. This grants seemingly full personhood to a frozen embryo created through a process like IVF. As I write, fertility doctors across the country are working to move embryos created through science to states where personhood laws are not in place. It’s important to note that this act alone can cause damage to the created embryos that patients have likely spent thousands of dollars, and so much personal heartache, to create. (source: WSJ).

In 2019, I made the choice to freeze my eggs before beginning Doxil infusions for my desmoid tumor. Insurance covered nothing of this process, and it cost several thousand dollars, even with assistance from the Livestrong Foundation, which covered most of my pre-retrieval medications. (You can read my posts here). If I had a partner at that time, I would have chosen to freeze embryos. Because cancer should not dictate a reproductive path for individuals or families.

But here we are. 

You may not consider yourself a political person. But like it or not: the personal IS political. And as a woman with cancer, this ruling is undeniably personal. 

If you feel that this ruling is not personal to you: I urge you to look at the life circumstances that prevent you from feeling that impact at this time. But remember: regardless of what you consider, cancer does not play fair. It strikes down people across party lines. It is no more a moral failing than any other personal tragedy.

Whether an egg is fertilized in a laboratory or through sexual intercourse: the decision on how to proceed should rest with the person carrying it alone. 

My heart is with all who lost a constitutional right last week and those who love them: especially my beloved cancer community, who has already endured the loss of control over their body through their diagnosis. 

Please take care of yourself, as best you can, however you are able.

— Christina


Unicorn Squad: Assemble! I Need Your Help!

Hi, it’s me! Your friend with a rare/orphan disease!

Did you know that desmoid tumors are designated as an orphan disease since it impacts less than 200,000 in the United States? (Hence, the “unicorn” half of the Unicorn Squad title.) As an orphan disease patient, I need your help!

In the Build Back Better plan, there is a proposed cut that would impact the rare disease community in a HUGE way. Here’s what the National Organization of Rare Diseases states:

“Section 138141 of the Build Back Better Act would dramatically curtail the Orphan Drug Tax Credit for qualified clinical testing expenses … The ODTC can help to offset the cost of developing and testing orphan therapies as they move through the clinical trial process” (like my current clinical trial drug!)

I am all for making medication affordable for consumers – trust me, I complain about it a lot… but let’s focus on the main drivers of high drug costs and not the companies that are actually helping people like me.

Please join me in asking Congress to protect the Orphan Drug Tax Credit! It’s quick and easy thanks to the NORD website. Simply click “take action” under the heading “Tell Congress to Protect the Orphan Drug Tax Credit Today!” Then enter your address so your representatives can be automatically populated. Enter your information on the left, and either send the draft letter or add your own language.

Thank you so much, friends. It truly takes a village to protect a unicorn!

With gratitude,