This article is co-authored by Miriam Yeung [17], Executive Director, and Amanda Allen [18], Reproductive Justice Fellow/Georgetown Women’s Law and Public Policy Fellow at National Asian Pacific American Women's Forum.
This week the reproductive justice movement is celebrating a significant victory. Effective December 14 [19], immigrant women and girls will no longer be forced to get Gardasil, a vaccine developed by Merck and Company to prevent transmission of the strains of human papillomavirus (HPV) linked to cervical cancer. This marks the reversal of a harmful and discriminatory rule originally put in place in July 2008 by the U.S. Citizenship and Immigration Services (USCIS) that took away the ability of immigrant women and girls to make informed choices of whether or not to get the Gardasil injection. The National Asian Pacific American Women’s Forum [20] (NAPAWF), along with other immigrant rights, reproductive justice, civil rights, public health and women’s rights advocacy groups, led the effort to reverse the rule. The successful outcome highlights the ways in which the reproductive justice framework is essential to achieving equitable results for historically marginalized communities. We believe this approach is also essential to securing accessible and affordable health care for all.
Background and Basics
There are more than 100 different strains [21] of HPV, the most common sexually transmitted infection in the United States, over 30 of which can be transmitted from person to person through sexual contact [21]. According to the Centers for Disease Control (CDC), approximately 20 million Americans are currently infected with HPV [22], and they estimate that at least half of sexually active men and women become infected at some point in their lives [22]. HPV transcends racial and geographic boundaries, affecting men and women of all racial and ethnic backgrounds across the U.S. A number of strains of HPV have been found to be the cause of virtually 100 percent of all cervical cancers.
On June 8, 2006, the Food and Drug Administration (FDA) approved the use of Gardasil [23] among girls and women ages 9-26. Gardasil is administered through a series of three separate injections over the course of six months. Like all vaccines, there are some side effects and risks, and because Gardasil only recently entered the market, there are also possible unknown risks. Because it is so new, there is little research [24] on how long the vaccine remains effective and whether eliminating some strains of cancer-causing virus will decrease the body’s natural immunity to other strains of the virus. At the same time, many reproductive health centers offer the HPV vaccine to their patients [25] as a part of primary, preventive care.
Recommended for Citizens, Required for Immigrants
In July 2008, USCIS added Gardasil to their list of mandatory vaccinations [26] for green card applicants and immigrants applying to become U.S. citizens. The requirement is the result of a 1996 change made to our immigration law that requires all persons seeking to adjust their status to legal permanent resident in the U.S., or applying for immigrant visas to enter the U.S, be immunized against “vaccine-preventable diseases” recommended by an advisory committee at the CDC. Thus, once that recommendation was made for the general public, the HPV vaccination became an automatic requirement for immigrants, a change which was likely unintended by CDC officials [27].
The HPV vaccine mandate created an untenable additional financial and administrative barrier to the immigration application process. A significant percentage of immigrant women lack health insurance. Asian and Pacific Islander (API) women, for example, are less likely than their white counterparts to have employer-based health insurance [28]. This is due, in part, because many API women are concentrated in low-wage employment, such as the garment and cosmetology industries, where employer-based insurance is rarely offered. Uninsured women who lack access to benefits are the most vulnerable to cervical cancer, and the least likely to obtain the vaccine. Thus, the HPV vaccine mandate was particularly problematic for many immigrant women because they are disproportionately un- or underinsured. The full treatment of the HPV vaccine costs a minimum of $360, or $120 per dose [29], excluding the additional fees and costs of administering the vaccine. Moreover, most private health insurance plans don’t cover immigration-related medical procedures—thus, regardless of whether immigrant women have insurance, the likelihood that they would be required to shoulder the burden of vaccination expenses was high. And, it’s important to recognize that the costs associated with Gardasil were in addition to the more than $1,000 required for application fees and the cost of meeting over a dozen other mandatory immigrant vaccination requirements imposed on green card applicants.
Some advocacy groups also opposed the requirement because it unfairly forced immigrant women to subject their bodies to a vaccine that is new to the market and has unknown long-term efficacy rates. And, unlike the other infectious diseases addressed on the list of required vaccinations, such as measles or chicken pox, HPV does not pose an immediate threat to public health. Thus, requiring immigrant women to obtain Gardasil did not comport with sound public health reasons provided for requiring other mandated vaccines—namely, those that protect against a disease that has the potential to cause an outbreak or to protect against a disease that has been eliminated in the United States. At the time the Gardasil decision was made, 12 of the 14 [30] required vaccinations for immigrants were intended to combat infectious diseases that are transmitted by respiratory route and are considered to be highly contagious. Gardasil and the only available vaccine for shingles, Zoster, were the only exceptions.
Additionally, progressive groups acknowledged that the mandatory use of a medical procedure on a targeted population when it is not required of the general population is discriminatory. Like their U.S. citizen counterparts, all prospective immigrant women should have the opportunity to make an informed decision about their use of the HPV vaccine, weighing both the potential costs and health benefits of using the vaccine. While a pregnant U.S. citizen can decide whether or not to be vaccinated, a pregnant immigrant woman must be vaccinated without any opportunity to weigh the possible risks to herself and her pregnancy.
Interestingly, the lack of opposition to the immigrant HPV vaccine requirement from conservative religious groups demonstrated that a double standard continues to apply [31] to citizen versus immigrant girls and young women. By the end of 2007, legislators in at least 27 states and the District of Columbia had introduced legislation to mandate the HPV vaccine for school entrants. Conservative advocacy groups opposed the state proposals and claimed that the mandatory vaccination of citizen girls and young women would encourage teens to engage in more risky sexual behavior and disrupt their abstinence-only message [32]. Yet, no such outcry arose when USCIS announced the requirement of the HPV vaccine for immigrant girls and women. This notable difference in response raises the troubling question [33] of whether certain bodies are still seen as more deserving than others of “protection,” even if it is of the wrong kind.
Reproductive Justice Response
NAPAWF and the National Latina Institute for Reproductive Health [34], as co-chairs of the National Coalition of Immigrant Women’s Rights [35], as well as other allied organizations, opposed the requirement from the outset and applied a reproductive justice lens to address the rule’s shortcomings and advocate for a just outcome. The reproductive justice framework seeks to place those most marginalized at the center by highlight the overlapping forms of oppression faced by the communities whose voices are least heard. The reproductive justice framework demands that individuals be given the information and resources necessary to make the best choices for their bodies, families and communities. The immigrant HPV vaccine mandate, then, was a textbook example of reproductive injustice—dictating to a particular group of women what they must do to their bodies.
Additionally, the reproductive justice movement offers an example of social justice practice that is cross-movement and intersectional. Just as those most affected by an HPV vaccine mandate -- young immigrant women –do not experience their lives, or the discrimination they face as separate issues, our movements must also learn to dismantle the barriers that often divide us. The working group that NAPAWF spearheaded consisted of nearly 40 national and state organizations representing civil rights, reproductive health, public health, youth, immigrant rights and reproductive justice organizations. This working group was tasked with creating a cross-movement reproductive justice framing of the issue that did not undermine any group's position. The working group also researched and developed a policy advocacy and organizing strategy that proved to be successful. California Latinas for Reproductive Justice [36], for instance, built partnerships with key California immigrant rights organizations and mobilized women of color activists on the ground in California to voice their opposition to the mandate.
One of the most remarkable aspects of the campaign’s success in reversing the CDC’s decision was the strong collective response that developed among progressive organizations. Over 100 groups [37] representing different constituencies and even differing views about the vaccine itself joined together to send a clear message to the CDC that the singling out of immigrant women would not be tolerated. The working group’s success in removing the Gardasil mandate for immigrant women, then, signals the importance of continuing to build and sustain a movement that addresses the intersections between immigration statuses, class, and access to health care.
Changing the Conversation
The immigrant HPV vaccine mandate illustrates the need for health care reform that meets the needs of poor women, immigrant women, and women of color. Mandating the use of a particular medical procedure does not address the root of the problem, i.e. the fact that the women most likely to develop cervical cancer are the least likely to have the resources to access preventive care. Research that disaggregates data based on race and ethnicity shows that cervical cancer has a disproportionate impact on certain immigrants, particularly Latina, Vietnamese, Korean and Hmong women. However, for many immigrant women, the high expense of medical care, the lack of health insurance, and the difficulty in finding culturally competent services [38] means that they forego routine preventive health care services such as pap smears that could identify cervical dysplasia before cancer develops. It is these inequalities in access that contribute to the high rates of death and illness from cervical cancer among immigrant women.
While it is obviously important to increase access for all immigrant women to safe medical technologies such as vaccines, mandating the use of medical procedures will not fully improve immigrant women’s lives. Reducing health disparities faced by immigrant women requires greatly expanded access to culturally competent medical services and effective measures to make health care more affordable. In addition, expanding access to and encouraging voluntary use of a vaccine like Gardasil among immigrant populations requires a combination of genuine, informed consent and efforts to increase the affordability for immigrant women of the vaccine.
Moreover, immigrant women cannot access public health programs [39] including Medicaid because of the five-year waiting period imposed on legal immigrants before they can apply for such benefits. Even the best proposals in the current health care reform bills do nothing to address this problem—currently, neither the House or current Senate bills eliminate the five-year bar, and the Senate bill even goes so far as to prohibit undocumented immigrants from using their own money to purchase health insurance through the exchange. The CDC’s and USCIS’s decision to mandate Gardasil for immigrant women would not have resolved these types of health disparities known to affect certain immigrant communities.
The CDC’s decision to reverse the HPV vaccine mandate is a step in the right direction to recognizing that immigrant women need to be treated fairly. However, much more needs to be done to address immigrant women’s health needs. The current health care reform debate ignores the needs of immigrant women at best, and penalizes them at worst by prohibiting them from accessing affordable health care in the exchange. Moreover, political debates suggesting that immigration reform should happen after health reform imply that immigrants do not need health care and that identities can be precisely and tidily segregated.
The reproductive justice framework recognizes that people experience a multiplicity of identities, and it is the intersections of those identities that shape their needs; immigrant women may be in poverty, uninsured, or caring for elderly family members as well as their own children. Recognizing the reproductive injustice of the HPV vaccine mandate was a start; now we need to relocate the conversation into other political realms to fight for the right of self-determination for everyone.