About nine months ago, I cut off over a foot of my hair. The dramatic shearing wasn’t out of any desperate need for change or self-image makeover; instead, I had been growing it for over a year so that I could donate it to a non-profit that uses donated hair to make wigs for children with either permanent hair loss caused by alopecia or temporary hair loss caused by chemotherapy treatment. I certainly don’t think I’m the world’s savior because of this contribution, but hey, hair grows, and it was no major inconvenience to just avoid getting haircuts for awhile in order to contribute something small that will offer a bit of brightness to someone else’s day.
A few weeks afterward in the corridor of my office building, I passed a man who works in the office just past mine. He smiled and said “Your hair looks great. I heard you donated it to a group that makes wigs for kids with cancer.” When I confirmed that this was true, he said, “I think that’s great; it’s really nice. You see, I have cancer, and I always appreciate hearing that people care.”
Yesterday morning in the locker room of my gym as I was getting ready to go to work after my morning swim, I chatted with a young Polish woman who is usually there at the same time as me. She is pretty, with a soft, round face that is always smiling, but her bright blue eyes belie a hint of sadness that I suspect hides beneath the surface. After we groaned a bit about how early it was and how long the week had been, she began telling me about her motivations for getting up early each day to work out. “After my husband was diagnosed with cancer, I decided I needed to work harder to make myself stronger. That’s why I get out of bed in the morning and come here. It helps.”
Three years ago my grandmother died of gastric cancer; she was 71. Nearly twenty years ago my grandfather died of colon and lung cancer; he was 67. Last week I learned that I have high-grade intraepithelial lesions; this means that there are patches of cells on my cervix that are undergoing pre-malignant changes. If I were to do nothing about it, there is a very high probability that I would develop cervical cancer and that it would kill me. I am 26.
Next week I will have these problematic cells removed during an in-office visit where my doctor will use loop electrosurgical excision procedure (LEEP). A thin, low-voltage electrified wire loop will cut out the abnormal tissue; it will be packaged up nicely and sent off to a lab to make sure none of the pesky cells has gone cancerous, and I will wait and see what my insides look like in three months. Hopefully this will be it; all abnormalities will be removed and I will continue to live a long, normal, cancer-free lifespan.
When my doctor called me last week, I was at work. I hadn’t even been thinking about my recent biopsy because low-grade (e.g., lower risk of becoming cancerous) intraepithelial lesions are extremely common amongst women in their twenties, and there was no reason to think that I would be the exception to the rule. After all, by anyone’s standards I am a really healthy individual—I almost never even get the sniffles, which is no small immunologic feat considering the sheer number of sick New Yorkers in the wintertime who wipe their germ-infested snotty noses on their hands/gloves/sleeves and brush up against you or grasp the same bar on the subway car that you must also immediately grab as the train lurches forward. My doctor’s matter-of-fact news made my heart drop into my stomach. I went into the stairwell and called my boyfriend, then choked back the tears, and returned to my desk to finish my work. I thought I could hold myself together until I was alone and had time to process everything, but unfortunately at the time I also had two houseguests, and alone time was not possible. Embarrassingly, I had a huge meltdown later that night that involved me sitting and sobbing on the fire escape just so that I could be alone.
Maybe I overreacted; after all, it’s not as if I’d been diagnosed with full-blown cancer and have six months to live. But I will try to explain the rationale for my emotional outburst as best I can. First, this procedure scares me. Yes, I know it’s not surgery per se, but I am having chunks of my cervix cut out. It’s going to hurt; lord knows the biopsy hurt enough. A local injection of anesthesia is going to be unpleasant, to say the least, and then, well, afterward there will lots of cramping, and let’s not forget the potential weeks of bleeding.
Second, women who have chunks of their cervix whittled away are likely to have more complicated pregnancies. Of course, you say that if I don’t want children, this should not be an issue to me, but as I tried to explain to my boyfriend, it’s not that I suddenly want children after knowing it’s going to be hard to have them, it’s just that I don’t like having options closed to me. And bang, there’s that door more or less slammed shut. After LEEP, women are less likely to carry pregnancies to term because of greater likelihood or cervical dilation during pregnancy, and that is the mildest pregnancy-related complication.
Third, I am scared what the pathologists might find in the samples that are sent to them for further testing. There is no reason to assume that I do in fact have cancer, but again, there was no reason for me to assume that this was going to happen either. I just feel like I am nowhere near out of the woods yet, and the prospect of going through the full treatment regimen for cervical cancer, the nuances of which I don’t even know yet, terrifies me.
Fourth, I feel a profound sense of unfairness about the whole situation. For as long as I can remember, I have been an extremely responsible individual in all aspects of life. I try to do things that are good in general and good for me in particular. I am very health-conscious and well-educated. I eat well, exercise often, make sure I’m not engaging in any “risk-taking behavior” on the personal health level (unless you count things like SCUBA diving, which is in another category, in my opinion). I encourage other people to be healthier, to reduce their risk of various kinds of disease. I’ve done everything right. And yet I must suffer the same consequences as if I were a much more irresponsible person.
Fifth, I’m angry. I’m angry for the same reason I feel that this is unfair, but I’m angry for a much larger reason than that. I’m angry because Gardasil® came too late for me. In case you are still catching up, Gardasil is the cervical cancer vaccine. If administered to girls (and boys, but that is a longer explanation) before they become sexually active, it is 99% effective at preventing the strains of human papillomavirus (HPV) that are the cause of almost all types of cervical cancer. I did get this series of shots immediately after it was approved by the FDA, but apparently by that time I already had the HPV strain that causes intraepithelial lesions to appear in the first place. Of course, I had no way of knowing, as my Pap smears had always been normal, and there is no other way to tell if you have this HPV strain because there are no symptoms. If this shot had been around when I was nine years old, I would not be going through this now.
However, the “what-ifs” of the situation aren’t the factors that really make my blood boil. The real source of my anger is that there is now a safe, effective vaccine that has the potential to eradicate this form of cancer. There is also a second cervical cancer vaccine, Cervarix™, in development now that will likely be approved within the year. Cervical cancer is currently the third most common form of cancer amongst women in the United States (and certainly in other areas of the world it is much more prevalent). And yet there are people who protest its use on supposed “moral” and “religious” grounds. The theory goes like this: Almost all cervical cancer is caused by HPV. HPV is sexually transmitted. If you vaccinate against cervical cancer, you are also vaccinating against a sexually transmitted disease. Therefore, if you vaccinate your children against a sexually transmitted disease, you are giving them permission to have sex, because than there will be no negative repercussions from having sex.
Right.
The logic of this particular syllogism escapes me too. The obvious fault is that even though this particular consequence of engaging in sexual activity would be eliminated, it does not change the fact that there are still a whole host of other terrible viruses and bacterial infections against which this vaccine provides no protection, including HIV, herpes, chlamydia, and gonorrhea to name a few, not to mention unintended pregnancy. One of the several less obvious arguments is that even if a young woman remains “virtuous” until the day she is married, there is no guarantee that her future spouse has, and that he is not carrying the strain of HPV that causes cervical cancer. He of course would have no way to tell if he was infected because this strain has no negative repercussions for men, as men do not have cervixes.
However, my understanding of the dissenters’ thinking is that if young girls fear contracting HPV and possibly cervical cancer, then of course they will not have sex (despite the fact that presumably the threat of HIV/AIDS is not a deterrent, by this rationale). There are certain sectors of people who are now vocally proclaiming that vaccination should be optional; that is should be a parent’s choice instead of being something that is mandated (and in the case of the socio-economically disadvantaged, paid for) by the government. (Of course, the people who fall into this category are usually Republican, conservative, Christian, have zealot tendencies, or some combination thereof, and because of this and other reasons, although I am trying to remain a relatively non-judgmental individual, I am beginning to detest them all unilaterally.) These peoples’ so-called moral fervor, as usual, gets the better of them, and not only do they decide not to protect their own daughters from a disease that can eventually kill them, but they are also forcing the poor, the uneducated, and often minority groups to also forego immunity from this particular disease.
Think about it. Those of us who are fortunate enough to be well-educated and who have a basic grasp of modern medicine will at least know about the existence of this vaccine and will understand how it works. We can have the option (and health insurance coverage) to choose whether or not to be vaccinated and to vaccinate our children. However, there are many, many people in this country who are not even aware that Gardasil is around, and even if they may have heard the name, they may not fully understand what it does and how it has the potential to save thousands of lives. In addition, there are countless people who may know about it and understand its benefits but who cannot afford it because they are uninsured or underinsured. $300-500 for three shots (plus time off from work to go to the appointments) is a lot of money when you are living paycheck to paycheck. These people really do not have a choice whether or not to get vaccinated or vaccinate their children; it’s already made for them. The only way that all sectors of society can benefit from this advance in medicine is if the vaccine is made mandatory for all schoolchildren; this way all kids (starting with girls, of course, pending more safety and efficacy testing by the drug’s manufacturer to verify its value for using it on boys, too) will receive it before they enter a certain year of school (and presumably before they become sexually active).
However, if the religious right has its way, there will be no mandatory vaccination for children, and eventually more women will die from a disease that we have the potential to completely stamp out within our lifespan. Case and point: take the July 12, 2007 approval of the 2008 Labor-HHS-Education appropriations bill (HR 3043). I have included the portion of Kaiser Family Foundation* Daily Women’s Health Policy Report from July 19, 2007 that describes the bill:
House Passes Spending Bill That Increases Abstinence Education, Family Planning Program Funding, Bans Funding for Mandated HPV Vaccination
The House on Thursday voted 276-140 to approve a $152 billion fiscal year 2008 Labor-HHS-Education appropriations bill (HR 3043), which includes increases in funding for HHS' Community-Based Abstinence Education Program and for the Title X family planning program, the AP/San Diego Union-Tribune reports (Taylor, AP/San Diego Union-Tribune, 7/19).
CBAE, which gives grants to groups that teach abstinence but not how to use contraception, would receive an allocation of $141 million for FY 2008 under the measure. The program's allocation in FY 2007 was $109 million, and President Bush requested a $137 million allocation for the program in FY 2008. Some Democrats hope the funding level for CBAE will garner support from Republicans on spending bills.
The measure also would allocate $311 million for Title X, an increase of $27.8 million from FY 2007. Some family planning advocates said the allocation is less than historic levels of funding, adjusted for inflation. The bill also would leave in place restrictions on federal funding for abortions. Bush has said that he will veto spending bills that exceed his budget requests (Kaiser Daily Women's Health Policy Report, 6/8). The Senate has not yet acted on the companion Labor-HHS-Education appropriations bill.
HPV Vaccine Amendment
The House bill also includes an amendment, introduced by Rep. Phil Gingrey (R-Ga.), that would prohibit federal funds from being used by states to require human papillomavirus vaccinations for school attendance. Gingrey's amendment passed on Wednesday by voice vote (Gingrey release, 7/19).
"I applaud the development of an HPV vaccine," Gingrey said, adding, "But for states to mandate vaccination for young women is both unprecedented and unacceptable. Whether or not girls get vaccinated against HPV is a decision for parents and physicians, not politicians and bureaucrats" (Lopes, Washington Times, 7/20).
Planned Parenthood Amendment
The House also voted 231-189 to reject an amendment introduced by Rep. Mike Pence (R-Ind.), that would have prohibited Planned Parenthood clinics from receiving any of the bill's family planning funds, CQ Today reports. Rep. Trent Franks (R-Ariz.) called Planned Parenthood a "death-dealing organization." Rep. Rosa DeLauro (D-Conn.) said, "If we value, as we say we do, women's health, ... we cannot strip Planned Parenthood of funding."
Nancy Clack, Planned Parenthood Federation of America vice president for public policy, said, "Planned Parenthood applauds members of Congress for defeating this outrageous attack on family planning and the more than 2.4 million women and men who rely on Planned Parenthood for birth control every year" (Wayne, CQ Today, 7/19).
I cannot possibly go into all the aspects of this bill that anger me (abstinence-only sex education is another long-winded rant entirely) or the ways in which it could have been worse (at least the Planned Parenthood Amendment made it) without writing a novel, so I will focus solely on the HPV Vaccine Amendment.
When I first read this release, I was livid to the point of being practically in tears. I simply could not believe that our policymakers, the people who are supposed to be concerned with the well-being of the American people, would allow their ideology to completely defy common sense. The quote from Rep. Phil Gingrey (a Republican from Georgia, of course) particularly set me off. He said, “I applaud the development of an HPV vaccine, but for states to mandate vaccination for young women is both unprecedented and unacceptable. Whether or not girls get vaccinated against HPV is a decision for parents and physicians, not politicians and bureaucrats.”
Correct me if I’m wrong, but the last time I checked it was, in fact, mandatory for ALL children attending school in this country to be vaccinated for measles, mumps, and rubella, among other diseases before they are allowed to enroll. Therefore I cannot see how a mandatory HPV vaccination is “both unprecedented and unacceptable.” Is it simply because currently the vaccine is FDA approved for females only? Or is it because of the stigma associated with sexually transmitted disease? I fail to understand why a parent would choose to protect his or her child against one disease but not another simply because of the way it is contracted.
My gut emotional reaction to the idea of a parent purposefully denying his or her child protection against a disease (and also that of policymakers denying thousands of women that same protection) is one of abject horror. It appalls me to think that there are people out there who think that HPV and cervical cancer are rightful consequences to engaging in “sinful” behavior. I have cried myself to sleep over the thought that there are parents who would set their daughters and granddaughters up to go through what I am going through now because they think God thinks sex is bad. I can’t comprehend how someone could think that all this tension and emotional turbulence, all the pain of the treatment procedures and the worrying about test results, the recovery time, potential pregnancy complications, and, worst-case scenario, cancer treatment, and if that doesn’t happen, a very painful death, is somehow deserved because a woman did not behave as she was “supposed to” behave.
I would be willing to bet if a vaccine were developed that could protect people against skin cancer, leukemia, lymphomas, lung cancer, or any other type of cancer, there would be very little moral protest about vaccinating the entire nation. If there were a cure for my grandfather’s colon cancer or my grandmother’s gastric cancer, then they would still be alive to see all their grandchildren being born and growing up. If there were a prophylactic drug that could have completely prevented their horrible, slow, and suffering disease progressions and ultimately their painful deaths, then I am sure that no one would have argued its value and its use. If we can stop pain and disease before they even begin, what is the harm in that? Why then would we deny women the same benefit that we would hypothetically give gastric or colon or lung cancer patients simply because they are sexually active? Is my life less valuable that that of someone who contracts breast or lung cancer? If the goal of cancer research is, as so many cancer advocates state, truly to eliminate the disease in all its forms, then we must start somewhere. Science has already made incredible strides in the right direction. When will the rest of society catch up?
As for me, now it's just a waiting game. I wait nervously for the procedure itself and with even more apprehension for lab results, which will come a week after the test. All I can do is hope for the best.
*The Kaiser Family Foundation is an organization that seeks to provide “timely, reliable, and non-partisan information on national health issues to policymakers, the media, and the general public.” See www.kaisernetwork.org for more information.
