Women in Alabama have a problem...
And it's not IVF
Hello everyone and welcome. Thank you to all who recently subscribed, shared or followed Cancer Culture. I’m so glad you are here. And thank you for all the love you gave Michael in last week’s post.
Since HRH Princess Kate’s cancer announcement, I’ve been thinking about how much we “need to know” about each other’s struggles, particularly as it relates to cancer. Is it enough to just be a person with cancer? How much are you required to share? Elliott San wrote about this beautifully in a recent post. If you’re not following , I encourage you to check it out.
A 2023 survey of millennial women conducted by the marketing site The Skimm reported that 77% of women surveyed agreed with the following statement: “It is clear to me that I am the only advocate for my health and well-being.”
Why?
57% said “I have been dismissed or misdiagnosed by medical professionals.”
59% said, “I have sought treatment from doctors who do not believe me, or who have ignored my needs.”
Celebrities have recently shared their stories of being dismissed or misdiagnosed. For example, at a “Day of Unreasonable Conversation,” Halle Berry told the following story while discussing her work in women’s health advocacy:
Berry recalled having extreme pain after sex and going to the doctor, who told her she had the worst case of herpes he’d ever seen. She and [her husband] Hunt were both tested and neither ended up having herpes, and “I realized after the fact that is a symptom of perimenopause” due to dryness. She continued, “My doctor had no knowledge and didn’t prepare me, that’s when I knew, ‘Oh my gosh, I’ve got to use my platform, I have to use all of who I am, and I have to start making a change and a difference for other women.'”
Celebrities. They’re just like us.
According to Gallup, women are already almost twice as likely than men to avoid medical care due to cost. So, what happens if they also don’t feel welcome, heard or valued? I told you what happens to a celebrity. Now let me tell you what happens to women in Alabama.
In October 2022, 65 physicians and other healthcare leaders met in Birmingham, Alabama to address a public health crisis affecting women in their state. The result of the meeting was a statewide action plan called Operation Wipe Out. At end of the summit, Nancy Wright, director of the Alabama Department of Public Health, told a reporter that the meeting “symbolizes what’s best about our state.”
Given the recent controversy surrounding the legality of in vitro fertilization in Alabama, you may wonder if the meeting was to develop a plan to “wipe out” IVF. It was not. But it did have to do with women’s reproductive organs.
Cervical cancer is almost entirely preventable and/or curable. Since the introduction of the Pap smear by Greek physician Georgios Papanikolaou (whose wife submitted to DAILY Pap smears to help his research!), the majority of cervical cancer is found early and treated with minimally invasive procedures.
Due to screening and now HPV (human papilloma virus, a common cause of cervical cancer) vaccination, less than 4K American women die each year from cervical cancer and rates of new diagnoses continue to drop.
Except in Alabama.
According to the Alabama Operation Wipe Out website, the mortality rate from cervical cancer - which again is almost completely preventable and treatable - in Alabama is almost double the national rate. Almost half of all women diagnosed with cervical cancer in Alabama present at advanced/incurable stages, a trend that disproportionately impacts black and Hispanic women.
Why is this so, one might ask? The report lays out a couple of factors unique to Alabama.
First, the average rate of HPV vaccination among eligible children in Alabama is 20%. TWENTY PERCENT! That’s less than half the national average. In some counties, like Clarke and Monroe,10% or less of children are fully vaccinated against HPV. As a result, Alabama ranks 45th for HPV vaccination rates in the country.
Alabama is also one of 26 states that does not mandate comprehensive sexual health education in schools, missing what Human Rights Watch calls “an important opportunity to lay the groundwork for cancer prevention” including ways to prevent HPV infection, the most common sexually transmitted virus, and the need for regular cervical cancer screening.
In addition, more than half the counties in Alabama do not have a practicing gynecologist. This forces women to take time off work to travel hours for healthcare and/or to choose between paying for necessities like food or for travel to see a doctor. Looking at the map below, it’s actually rare to have more than one GYN in a county.
As a radiation oncologist and resident of a rural community, I have experienced the disproportionate impact of cervical cancer on women based on where they live. From young mothers serving fast food to undocumented migrant farm workers, women living in rural communities are often employed in minimum wage jobs without paid time off or employer sponsored health plans. Many are on Medicaid and food stamps even while working full time. The choice these women face if they are even aware of cervical cancer screening recommendations AND can find a doctor is to lose a day’s wages to go to the doctor or keep working and hope for the best.
The problem is that when cervical cancer finally presents itself with vaginal bleeding and pain, it is usually very advanced, requiring invasive and lengthy treatment including daily radiation treatments and weekly chemotherapy for six to eight weeks. Often, patients must travel to academic centers 3-5 times for specialized internal radiation treatments that are not available in rural communities. Sometimes this definitive treatment is followed by months of immunotherapy infusions.
Even with this aggressive treatment, the cure rate for advanced (Stage III or IVA) cervical cancer is less than 50% and women are left with a myriad of post treatment side effects including chronic diarrhea and pelvic pain. Most must adopt a weekly habit of inserting stretching devices known as dilators into their vaginas to prevent atrophy which can limit physical exams to check for cancer recurrence and lead to discomfort during sex.
I refer patients to a pelvic floor rehabilitation specialist to discuss all of these concerns. In many rural communities, this means another appointment, another co-pay, another day off work and another long drive. “Is it worth it?” some patients ask me. I’m not sure what to say.
Another side effect of cervical cancer treatment is infertility. The chemotherapy and pelvic radiation usually causes ovaries to stop releasing eggs and producing estrogen, a term called primary ovarian insufficiency. This can lead to early menopause and a cessation of menstrual cycles. Experts recommend a consultation with an oncofertility specialist prior to starting treatment for a discussion of fertility preservation options including egg or embryo preservation. (Unless of course you are in Alabama where it’s not clear when or if IVF will be allowed.)
Oncofertility services are not widely available in rural areas, again necessitating multiple trips to a larger center, hours away from the woman’s home with more unpaid leave from work. This can also lead to delays in cancer treatment to harvest eggs. For these reasons, many women elect not to pursue fertility preservation and accept permanent infertility as a cost of cancer care. This devastating realization adds to the shame and stigma of cancer affecting an area of a woman’s body associated with sexual pleasure and reproduction.
In its recent opinion, the Alabama Supreme Court explored “the sanctity of unborn life,” a term the Court admits is not expressly defined by the Alabama constitution. Chief Justice Tom Parker extolled the virtue of “the theologically based view of the sanctity of life adopted by the People of Alabama” passionately arguing that the existence of the embryos “cannot be destroyed without effacing [God’s] glory.”
Ignoring the gross overreach of separation of church and state guaranteed to every American citizen, the highest court of Alabama codified more protection to an embryo lost by accidental thawing than to the prevention and treatment of cancer in the bodies from which the eggs came. Or should the embryo survive implantation and gestation, the cervixes present in their possibly female bodies.
Alabama State Medical Officer Dr. Scott Wright who authored the Operation Wipeout Cervical Cancer report referred to the project as “a historic milestone” and urged everyone in Alabama from parents to business leaders to get involved in the effort to prevent and cure cervical cancer. I applaud these health leaders for their effort and optimism.
Having ensured that fertilized cells in test tubes safe are from harm, perhaps the Alabama Supreme Court justices can now turn their enthusiasm towards women’s health by joining Dr. Wright in saving the lives (and cervixes) of the Alabama mothers who will ultimately raise them.
Thanks for the tag in the post. Once again powerful and sobering words, and I really appreciate the breadth of knowledge you bring to discussing cancer. I always learn something. (Though I might not necessarily like it!)
Stacy, I’m in tears over here in Santa Monica, where my daughter and I have healthcare and where I don’t have to choose between seeing a doctor and being able to buy groceries (for now). Thank you for spreading the word. I feel such sadness and rage and desperation and I just can’t believe this is where we are in 2024. And I really hope and pray it’s about to get better, not worse.