January is Cervical Cancer Awareness Month, and the National Latina Institute for Reproductive Health (NLIRH) is launching “¡Acábalo Ya! Working Together to End Cervical Cancer.” The campaign is aimed at educating Latinas about this disease and how to protect their health; raising the profile of cervical cancer prevention as a national reproductive justice and women’s health priority; and advocating for greater access to the tools and care needed to prevent, detect, and eventually end cervical cancer.

The NLIRH is hosting a blog carnival this week on the topic: What will it take to end cervical cancer? Read more on Why Cervical Cancer is a LGBT Issue by Verónica Bayetti-Flores, NLIRH policy research specialist; Cervical Cancer Awareness Month: Trans Men and Genderqueer/Gender Nonconforming People by the National Center for Transgender Equality; Screen More Women for Cervical Cancer – Not the Same Women More Often! by Kate Ryan, program coordinator, National Women’s Health Network; and Thank YOU Affordable Care Act for Helping Cervixes Stay Healthy by Keely Monroe, program coordinator, National Women’s Health Network.

The following text on disparities in access to Pap tests and HPV vaccines has been adapted from the 2011 edition of “Our Bodies, Ourselves.”

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Most women who die of cervical cancer never had regular Pap tests, had false-negative results, or did not receive proper follow-up.

In the United States, socioeconomic and racial disparities are evident in statistics for cervical cancer. Vietnamese immigrants are five times more likely to be diagnosed with cervical cancer than white women. African-American and Native-American women are twice as likely to die of the disease as are white women. In one study, Hispanic women had about twice the cervical cancer incidence of non-Hispanic women in border counties near Mexico, and Hispanic women are 1.5 times more likely to die from cervical cancer as compared to non-Hispanic white women.

Disparities are due, at least in part, to women of color having less access to Pap screening and regular health care. It is quite possible that those women with the highest rates of cervical cancer will also have less access not only to Pap screening but also to the HPV vaccine. Until our health care system addresses such disparities in access, girls and women likely to benefit the most from this vaccine may well not be able to choose it.

To ensure more equal access to any adolescent vaccine, adequate infrastructure and resources must be made available. Some recommend implementation of school-based adolescent immunization programs similar to those formerly in place for delivery of hepatitis B vaccines. The United Kingdom and Australia have volunteer, nationally supported school-based campaigns that have resulted in high HPV vaccine coverage for about 70 percent of girls.

Currently, school-based health programs and routine preventive care visits for adolescents are limited in the United States, making it highly difficult to provide good access to HPV vaccines, especially the type of access needed to ensure all three required vaccine doses are administered. Available data suggest HPV vaccine coverage in the United States is low (less than 50 percent), and the proportion of girls receiving all three doses of the HPV vaccine is even lower (less than 25 percent).

Pap Tests Essential for Prevention and Treatment

HPV vaccines do not protect against all types of HPV associated with cervical cancer, and it is currently unclear how long they remain effective or whether booster shots will be needed to maintain protection throughout adulthood. Thus, regular Pap tests among sexually active women remain essential for cervical cancer prevention. Resources should not be diverted away from Pap screening programs to pay for the unusually expensive cervical cancer vaccine. Because Merck marketed Gardasil with a campaign that unnecessarily frightened girls, young women, and parents, many people now have a distorted view of this disease, the vaccine, and the continued importance of Pap screening.

There is no question that HPV vaccines represent an important scientific advance in the field of vaccine research, but exaggerating their potential benefit in places such as North America will not serve us well. In countries where there is little or no access to Pap screening, current HPV vaccines might have much more potential for saving lives if their costs were reduced considerably and if adequate infrastructure to prove them responsibly were securely in place.

The District of Columbia and dozens of states — many of which have been lobbied by vaccine makers to expand vaccination requirements — have introduced legislation to require, fund, or educate the public about the HPV vaccine. However, since 30 percent of infections are now caused by virus types for which the HPV vaccines do not provide protection, universal access to Pap tests remains critically important. Unfortunately, many girls in underserved communities (where HPV infection rates are often high) have less access to both the Pap test and the HPV vaccine.

For example, as of September 2009, when the CDC released its first state-level statistics for Gardasil, only 15.8 percent of girls in the relatively poor state of Mississippi had received the vaccine, compared with 54.7 percent of girls in the relatively wealthy state of Rhode Island. Partly because of greater access to Pap testing, the cervical cancer mortality rate in Rhode Island was already 50 percent lower than in Mississippi — which means the girls in Rhode Island are at much lower risk of contracting HPV to start with.

To reduce disparities for Latinas and other under-served women, we will need to make systemic changes in our health care system to increase access to screening and vaccinations for those who need it most.

In End-of-Life Care and Barriers for Female Inmates, the authors explore a little-discussed topic. For background, they explain that “end-of-life” in prisons does not typically occur they way we might think, and so health care, and especially end-of-life care, for incarcerated women is much more complex than we might be aware:

Stereotypical images in the popular media promote a perception that prison death is due to suicide or homicide by fellow inmates. In reality, execution, homicide, and suicide combined account for less than one fourth of all prison deaths. The vast majority of deaths in U.S. prisons are a result of natural causes, and the leading causes are chronic, debilitating diseases, with heart disease, cancer, and liver disease the top three for women, followed by AIDS, suicide, septicemia, respiratory diseases, cerebrovascular diseases, influenza/pneumonia, and digestive diseases.

The authors explore the current problems with end-of-life care, such as inmates being removed to infirmaries that create social isolation and lack visiting hours, adequate facilities, or comfort care. They put it bluntly: “Within the current, prevalent public climate of ‘let ‘em rot,’ incarcerated women with EOL (end-of-life) needs are highly vulnerable.”

The authors then come to the following conclusion in response, one that we can certainly get behind: “The time has come to set aside the question ‘why provide humane care to dying female inmates?’ and to provide better EOL to all people.”

Another piece in the series advocates for prison health care providers to consider how past traumas might inform a female inmate’s health needs, encouraging providers to develop greater understanding of trauma in order to provide better care.

Finally, Barbara Guthrie writes a compelling piece, Toward a Gender-Responsive Restorative Correctional Health Care Model, which argues for institutions to completely rework their model of providing health care to female inmates. She calls for the explicit addressing of women’s specific health care needs and disparities, development of health action plans, free access to children and.or their caregivers, inclusion of educational and vocational training, and identification of health resources (such as community clinics) for women to access after release.

Guthrie writes about the need to address health and other inequities women experience prior to becoming incarcerated, and the ways in which confinement can make these inequalities worse. She writes:

At the time of confinement, female inmates are sicker than their male counterparts and are in dire need of health care….Specifically, female inmates, irrespective of their ethnicity or race, are more likely than their male counterparts to enter the correctional system with very serious and long-standing comorbidities as well as preexisting infectious diseases (HIV/AIDS, STIs, TB), chronic illness (diabetes, hypertension, cardiac disease, asthma), cancer (cervical and breast), substance use and abuse, and mental health issues/disorders (bipolar, depression, abuse, posttraumatic stress disorder…

Female inmates also report long-standing reproductive issues, such as intermittent bleeding and pelvic pain/discomfort that require screening and/or follow-up tests (Pap smears and or breast exams) or treatment during and after their confinement. Unfortunately, most correctional health care systems are unable to address the existing physical, mental, and social needs of female inmates, which exacerbates their already poor health.

Related to Guthrie’s work, this piece on gender-responsive strategies in jails may be of interest and covers some of the same principles.

Not surprisingly, the news rankled some conservatives who refuse to acknowledge the long-term economic or health benefits.

Take, for instance, Sandy Rios, a FOX News contributor and vice president of the Family-PAC Federal, a conservative political action committee, who likened women’s health needs to beauty services: ”We’re $14 trillion in debt and now we’re going to cover birth control, breast pumps, counseling for abuse? Are we going to do pedicures and manicures as well?”

Once again, we turn to Stephen Colbert to explain the outrage. And he does so beautifully, noting, for instance, that “a woman’s health decisions are a private matter between her priest and her husband,” and insurance companies should be in the business of covering only “necessary medical expenses — like boner pills.”

Plus, learn what happens when U.S. women get their hands on birth control pills …

• well-woman visits
• screening for gestational diabetes
• HPV testing
• STI counseling
• HIV screening and counseling
• contraception methods and counseling
• breastfeeding support, supplies, and counseling
• screening and counseling for domestic and interpersonal violence

Coverage for these services is expected to begin Aug. 1, 2012.

There is one caveat for some women regarding access to contraception without a co-pay — a provision that “Group health plans sponsored by certain religious employers, and group health insurance coverage in connection with such plans, are exempt from the requirement to cover contraceptive services.”

An announcement at the HealthCare.gov site indicates that public comment is welcome on this provision. Although I haven’t yet been able to locate it on Regulations.gov, instructions for comment and more detail about the exemption is provided in this document.

Several other aspects of women’s health were also covered by the Institute’s recommendations, including “screening and counseling for interpersonal and domestic violence.” While the birth control prevention got a lot of attention online, we’ve seen less discussion of this and other recommendations, so thought we’d highlight it.

An email we received from Futures Without Violence called it a “historic victory,” and explained, “This is not a requirement for screening for domestic violence. It does however, break down significant barriers to integrating comprehensive responses to domestic violence and we believe it will create new opportunities to train providers how to identify and help patients in abusive relationships.”

Seen any good discussion of this violence screening/counseling recommendation? Let us know in the comments.

As a reminder, you can view the Institute’s press release, recommendations, report brief, and full report, “Clinical Preventive Services for Women: Closing the Gap,” online. The Department of Health and Human Services will still need to adopt this list of recommendations for the care to be covered under the Affordable Care Act.

Somewhat relatedly, the Department of Health and Human Services (which will decide whether to accept the Institute’s recommendations), is holding an “Apps Against Abuse” challenge, inviting people to develop applications that “provide young adults with tools to help prevent sexual assault and dating violence.” More information on entering the challenge is available here.

With the 46th anniversary of Medicare only a few weeks away (July 30), the program is in serious danger. … You may have seen the Washington Post story last week that said, “President Obama is pressing congressional leaders to consider a far-reaching debt-reduction plan that would force Democrats to accept major changes to Social Security and Medicare in exchange for Republican support for fresh tax revenue,” and as that part of his pitch he’s proposing “significant reductions in Medicare spending.”

Yesterday’s New York Times reports that the president has “agreed to consider a change in Medicare, which would have pushed up the eligibility requirement for recipients from the age of 65 to 67.” Others, such as Sen. Joseph Lieberman, I-Conn., have made similar proposals and are also pushing for increased cost-sharing by Medicare beneficiaries, e.g. much higher deductibles for doctors’ visits.

Such measures would unquestionably reduce access to health care by our nation’s elderly and severely disabled, worsen their health outcomes and increase financial hardship.

Still worse, others such as Rep. Paul Ryan, R-Wis., would dismantle the Medicare program altogether, replacing it with vouchers to buy private insurance.

As you know, PNHP has joined with others in calling for the protection of the Medicare and Medicaid programs, even as we have pointed out their limitations and advocated for a single-payer national health insurance program, an improved Medicare for all, as the best way to assure truly universal coverage and control costs.

We urge you to speak out on this issue and to submit a letter to the editor or an opinion piece to your local newspaper along these lines. You can find tips on how to do so here. Already a number of PNHP activists had their comments published, as illustrated by this op-ed by Dr. Jim Recht in Massachusetts and this letter by Ann Molison in Colorado.

This Thursday night, July 14, PNHP is hosting a special conference call on the status of Medicare featuring Bruce Vladeck, Ph.D., at 9 p.m. Eastern time. Vladeck, the former top administrator of the Medicare and Medicaid programs, will be followed by several PNHP national board members who will lead a discussion on “Medicare and single payer.” Dr. Claudia Fegan, past president of PNHP, will moderate the call. RSVP today and get call-in details by clicking here!

Cordially,
Garrett Adams, M.D., M.P.H.
President

The Affordable Care Act requires coverage – without a co-pay – for preventive services. Decisions about which services will be included are expected sometime this summer. Advocates, including the NWLC, have been working to encourage the Institute of Medicine and Department of Health and Human Services to include birth control as one of the preventive services to be covered.

If you’re unfamiliar with the “blog carnival” concept, it’s when lots of people post on the same topic or theme, and links to the posts are usually collected somewhere online – in this case by the NWLC. If you plan to participate with your own blog post on why birth control should be included as a key preventive care services for women, sign up online.

As I read the legislation, it includes coverage for both certified professional midwives and certified nurse-midwives.

The Governor remarked, “Access to midwifery care and home birth should not be limited only to those who can afford those services out of pocket. This law will ensure that all expectant mothers get the coverage and care they want and deserve.”

The legislation establishes a maternal mortality review board made up of an obstetrician, maternal-fetal medicine specialist, neonatologist, CNM, CPM, and other relevant specialists, along with a member of the public. This board will review maternal deaths in Vermont for factors associated with the deaths, and will make recommendations for systemic changes and legislation to address those factors.

Although it seems to have received less media attention, the law also includes a provision to allow transgender individuals to acquire new birth certificates reflecting their gender rather than the one assigned at birth. This will require a doctor’s note submitted to a court “stating that the individual has undergone surgical, hormonal, or other treatment appropriate for that individual for the purpose of gender transition.”

This reportedly makes Vermont the only state with a law that explicitly specifies that surgery is not required in order to obtain a new birth certificate. The law also provides that the original birth certificates will not be available for public inspection in order to protect individual privacy.

Health literacy is a complex topic that I’m still learning about, but it encompasses more than just reading skills. According to a common definition, health literacy is “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Encompassed in that definition are basic reading skills, but also more complex skills such as those required to read a prescription bottle and figure out how and when to take a drug, number skills, listening skills, and other abilities needed to navigate the healthcare system.

In 2003, it was estimated that more than one in three U.S. adults had limited health literacy skills.

Beyond those basic statistics, though, are the stories of real patients who are not able to be full participants in their health care because the information they need is not explained in an accessible way. The video below features many of those stories, and is a powerful introduction to the barriers faced by patients with low health literacy.

It includes Toni Cordell-Seiple’s recollection of being told by a gynecologist that a “simple repair” was needed for the problems she was experiencing. Toni didn’t understand what the doctor told her or the forms she was required to sign at the hospital, and was naturally reluctant to reveal her lack of understanding. It was only in her follow-up visit when a nurse asked how she was feeling since her hysterectomy that Toni understood what had been done.

In addition to this introductory video, several resources were suggested by conference speakers that are good starting points for readers who want to learn more:

• The book, Teaching Patients with Low Literacy Skills, by Cecilia and Leonard Doak
• The National Action Plan to Improve Health Literacy, from the U.S. Department of Health and Human Services
• The Health Literacy Universal Precautions Toolkit, from the Agency for Healthcare Research and Quality. Healthcare providers are likely familiar with “universal precautions” to avoid contact with any patient’s bodily fluids; in this case the universal precautions approach is meant to encourage providers to assume that any/all patients may have limited health literacy. As we were frequently reminded at the conference, nobody ever comes back and asks for materials that are harder to understand!
• Ask Me 3, which encourages patients to ask their healthcare providers three simple questions.
• AMA’s health literacy information and resources
• The free online course, Unified Health Communication (UHC): Addressing Health Literacy, Cultural Competency, and Limited English Proficiency, from the Health Resources and Services Administration. Continuing education credits are available for several healthcare professions.

I’d also love to hear from any of you about what you’re doing to make sure patients get the information they need in a way they can use.

The rise of maternal deaths in the United States is historic and worrisome. In 1987, maternal death ratios hit the all-time low of 6.6 deaths per 100,000 live birth. These ratios were essentially maintained for more than a decade. Around 2000, the ratio began to increase and has since nearly doubled, hovering between 12 and 15 deaths per 100,000 live births between 2003 and 2007…’near misses’ (maternal complications so severe the woman nearly died) have also increased by 27% between 1998 and 2005, now affecting approximately 34,000 women a year; and appalling disparities in maternal health outcomes exist between racial and ethnic groups, and among women living in different parts of the United States.

The authors draw attention to troublesome disparities, noting that “for the last 50 years, black women who give birth in the United States have been approximately four times as likely to die as white women,” although they do not seem to have higher rates of medical complications that are common causes of maternal death and hemorrhage. They also note that 25% of white women, 32% of black women and 41% of American Indian and Alaska Native women do not receive adequate prenatal care.

Authors Francine Coeytaux, Debra Bingham, and Nan Strauss explore possible reasons for the increase in maternal mortality, including lack of access to prenatal care, primary care, and insurance, inadequate or poor quality intrapartum care, limited postpartum care, overuse of medical interventions, and a lack of data collection and accountability.

They conclude with a call to action focused on systemic change, rather than smaller interventions in the health of individual women, arguing that “system-level improvements ensuring a uniformly high quality of care are also needed, and these improvements are beyond the control of the individual woman or an individual provider.” Action steps outlined in the piece include initiating, supporting and advancing legislation to reduce maternal mortality through improving care and reducing disparities, expanding data collection and analysis, and investigating more thoroughly why maternal deaths and injuries happen in the U.S. and taking steps to reduce those causes.

This and other editorials from Contraception are freely available online.