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Raising Women’s Voices where we’ve been missing!

Raising Women’s Voices was in Pittsburgh last week for our first-ever visit to the National Academy for State Health Policy (NASHP) conference. We had a two-fold purpose: learn and influence. The conference -- an annual convening of state health officials, policymakers, medical associations and others -- covered a host of valuable topics, including Medicaid expansion, maternal health and health equity. But we discovered that in too many sessions one thing was missing: the voices and lived experiences of the women who participate in public health programs.

RWV has a special mission of engaging women who are not often invited into health policy discussions: women of color, low-income women, immigrant women, young women, women with disabilities, and members of the LGBTQ community. We place a priority on asking women to share their experiences navigating the health care system. Because women are often arrangers of health care for families and communities, we believe women are grassroots experts in what is wrong with the current health system and what it will take to fix it. To further that mission, staff from two of RWV’s three co-founding organizations attended the NASHP conference, speaking up for women. Pictured from left to right are Christy Gamble of the Black Women’s Health Imperative, and Cecilia Sáenz Becerra and Sarah Christopherson of the National Women’s Health Network.
This fall, RWV and our regional coordinators are gearing up to bring the voices of women to the policy debates surrounding health system transformation -- the emerging area of ACA work that aims to achieve truly “patient-centered care” and to deliver “the right care, at the right time in the right place.” A number of our regional coordinators are starting by conducting listening sessions with the women, LGBTQ people and families who make up their constituencies to hear firsthand what is needed. For example, grassroots constituents might suggest having doctors’ offices stay open later, making sure patients are not given the same test over and over, or having more community health workers and promontoras.

While we didn’t have the results from those listening sessions in hand for this year’s NASHP conference, we found it was often important just to start asking the right questions. Too often, the disparate impact of policy decisions on women, and particularly women of color, didn’t enter the conversation until RWV and our allies raised it. RWV Regional coordinator La'Tasha D. Mayes, Founder & Executive Director of New Voices for Reproductive Justice, pictured at left, joined RWV Regional Field Manager
Cecilia Sáenz Becerra of the National Women’s Health Network in raising these concerns.
For example, in our research earlier this year, we’d found that because women live in poverty, fall into the Medicaid gap, and lack reliable access to transportation at disproportionately high rates, they are particularly vulnerable to the decisions of policymakers during the Medicaid expansion waiver process. So we pressed public health officials from Indiana and Iowa to defend their decision to deny non-emergency medical transportation to the Medicaid expansion population and questioned whether their evaluations were accurately representing women’s experiences.
Drawing on our background fighting sterilization abuse and reproductive coercion directed toward women of color, low-income women, and immigrant women, we and our allies pushed back when panelists sought to override women’s reproductive autonomy in deciding for themselves which contraceptive was best.
And when several speakers noted the challenges faced by individuals accessing health insurance for the first time, RWV was there to talk about our fabulous health literacy guides—in English and Spanish!

Next up for the RWV team: Meet us at the APHA conference in Denver!

This coming week, RWV’s three co-founders – Byllye Avery of the Black Women’s Health Imperative, Lois Uttley of MergerWatch and Cindy Pearson of the National Women’s Health Network -- will be at the American Public Health Association conference in Denver. If you are going to be there, stop by our booth (# 1407) in the exhibit hall when it opens Sunday afternoon, October 30, or on Monday (all day), Tuesday (all day) or Wednesday (until noon). All three co-founders will be there on Sunday afternoon to greet visitors, offer free copies of our health insurance literacy fact sheets and Personal Health Journals and discuss what the Affordable Care Act means for women, LGBTQ people and our families.
On Monday, Oct. 31, you can hear from the three co-founders and from RWV’s Denver-based regional coordinator, Cynthia Negron from the Colorado Organization for Latina Opportunity and Reproductive Rights (COLOR) during a panel presentation sponsored by APHA’s Women’s Caucus. It’s session #3181, taking place from 10:30 a.m. to noon at the Hyatt Regency Denver Hotel, Centennial Ballroom B. Here’s what they will be discussing:

  • Improving the Affordable Care Act for women and LGBT people in 2017 and beyond (Uttley).
  • Medicaid expansion, waivers and women: Community organizing and advocacy makes a difference (Pearson).
  • What’s at stake for Latina health in 2017 and beyond? (Negron).
  • From the margins to inclusion:Working with trans and queer immigrant-led activists on the ACA (Avery).
Open enrollment starts November 1!

The fourth open enrollment period for coverage through the ACA marketplaces starts next Tuesday. We’re getting ready, and will have a full report next week. Stay tuned!


How do we find and enroll still-uninsured people?

The Affordable Care Act (ACA) has dramatically reduced the number of people living in the U.S. without health insurance. U.S. Secretary of Health and Human Services Sylvia Mathews Burwell predicted this week that another one million people will enroll in marketplace coverage for 2017, bringing the total of people who have purchased private marketplace plans to 11.4 million people.

As the November 1 start of Open Enrollment Period 4 approaches, state and federal marketplace officials, enrollers and health care advocacy organizations such as Raising Women’s Voices are focusing on a set of key questions: Who are the remaining uninsured people? Where do they live? Are they actually eligible for coverage, and if so, how do we reach and enroll them?
A new report by the Kaiser Family Foundation takes a close look at the estimated 27.2 million non-elderly people in the U.S. who lacked health coverage in 2016. The good news is that 43 percent of these uninsured people (11.7 million) are believed to be eligible for Medicaid, children’s health insurance or for tax credits that would subsidize the cost of private insurance purchased through the ACA marketplaces. The graphic below shows those eligible people in shades of blue.

The more discouraging news is that, at least for now, more than half of the remaining uninsured people (15.5 million or 57 percent) are not eligible for ACA coverage. Why? Kaiser’s analysis found that about 2.6 million (or 10 percent) fall in the coverage gap that has been created in states that still are refusing to expand their Medicaid programs. Another 5.4 million (or the 20 percent of the total uninsured) are ineligible for coverage due to their immigration status. We need policy changes at the state and/or federal level to address those barriers to coverage!
The rest of the uninsured people who are not eligible for ACA coverage either have an offer of employer-sponsored insurance they have not accepted (4.5 million people or 16 percent of the total uninsured) or have incomes that are too high to qualify them for tax credits (3 million or 11 percent of the total). In both of those cases, the cost of insurance may be discouraging enrollment.

Case Study: New York’s Remaining Uninsured

NY State of Health, the state-based marketplace in the Empire State, has had a track record of success, enrolling more than 2.8 million people in marketplace plans, children’s health insurance, Medicaid and a new low-cost option called the Essential Plan. As a result, the state’s uninsured rate has dropped from 10 percent to 5 percent.

“So, that remaining 5 percent – that’s what we are working on now,” explained Danielle Holahan, Deputy Director of NY State of Health, during an ACA Outreach and Enrollment Summit in Manhattan Wednesday (see photo) that attracted more than 125 people. Raising Women’s Voices-NY is working in partnership with the Health Care Education Project (HEP) of 1199 SEIU and with members of the Heath Care for All New York coalition to co-sponsor eight such summits around New York State to help boost outreach and enrollment during OE4.  
The Kaiser study estimated that New York still has 1,183,000 remaining non-elderly uninsured people. Of this group, Kaiser estimates that more than half (54 percent) are believed to be eligible for coverage -- an estimated 36 percent are eligible for Medicaid and 18 percent are eligible for tax credits to subsidize private coverage.
NY State of Health’s Holahan provided some suggested geographic targets for outreach to the remaining uninsured, based on marketplace research. For example, in the Bronx she listed eight neighborhoods (such as Soundview, Mott Haven and Morris Heights) where the uninsured rates range from 22 to 33 percent – much higher than the statewide uninsured rate. In Manhattan, she listed six neighborhoods (Washington Heights, Harlem, Central Harlem, East Harlem, Inwood and Hell’s Kitchen) where the uninsured rates range from 16 to 25 percent.  
Demographic targets for outreach include young adults and Latinos, both groups with higher than average uninsured rates. Holahan and participants in the summit discussed various ways to reach the still-uninsured, such as through targeted outreach at barber shops and beauty salons, cultural heritage events and at job centers. One enroller suggested outreach at urban shopping malls, since the enrollment period coincides with holiday shopping.
The summit was also designed to help navigators and their clients cope with a number of post-enrollment problems that newly-insured people are likely to encounter. RWV-NY Director Lois Uttley  (in photo at left) presented health insurance literacy fact sheets that enrollers can use to help their clients learn how to use their new coverage more effectively to get the care they need and avoid unexpected costs. The fact sheets are based on RWV’s popular My Health, My Voice literacy campaign materials, but have been specifically tailored for use in New York State. For example, the fact sheets use actual examples of co-pays, deductibles and co-insurance common to plans being sold through the NY State of Health marketplace.

Uttley stressed the importance of teaching enrollees how to get started using their health insurance right away, such as by making appointments for preventive care visits. “We want people to see value in their new insurance, so they don’t stop paying their premiums part way through the year, or decide not to re-enroll,” she explained. She distributed copies of RWV’s Personal Health Journal, which enrollees can use to set personal health goals, assemble family medical histories, take notes on medical appointments and record contact information for their families' medical providers. Want to learn more about these materials? Visit



Your women’s health coverage could soon be even better!

Birth control without a co-pay. Well-woman visits without a deductible. Millions of women with private health insurance have benefitted from the preventive service coverage guaranteed by the Affordable Care Act. But that coverage may soon be even better!

For example, contraceptive coverage for women could be expanded to include a vasectomy for a woman’s male partner. Another proposal would allow a woman to receive a 12-month supply of contraceptives at once, thus eliminating risky gaps in birth control that can happen when a woman is delayed getting her prescription refilled. These are just some of the recommendations undergoing review through the Women’s Preventive Service Initiative (WPSI), a process that is being used to update the list of women’s preventive services that must be covered with no cost-sharing under the Affordable Care Act (ACA).

What is this review process and how does it work?

How did we get the women’s preventive services provisions in the ACA and who decides which services must covered? It’s not a straightforward matter.

The story begins on December 3, 2009. The Senate had just started floor debate on the ACA, which would last for a near-record 25 consecutive days and culminate in the first Christmas Eve vote since 1895, when the Senate would pass the ACA by a vote of 60-39. But first, Senators Barbara Mikulski (D-MD, pictured at left) and Lisa Murkowski (R-AK) had dueling women’s health amendments on the floor to settle. The former would quip of the latter: “She’s Murkowski. I’m Mikulski. We sound alike. And the amendments might sound alike. But boy, are they different.” The tenacious Democrat would win the vote and the day, but that would just be the beginning of a multi-year process to ensure that women have access to preventive care without cost-sharing.

Mikulski’s one-page Women’s Health Amendment was deceptively simple. It affirmed the underlying bill’s coverage of preventive services like breast cancer screenings without out-of-pocket costs, while also ensuring a broad range of additional protections for women. It did this by tasking the Health Resources and Services Administration (HRSA) -- an agency of the US Department of Health and Human Services (HHS) -- to draw up a list of “additional preventive care and screenings not described” elsewhere in the bill.

HRSA turned to the then-Institute of Medicine (IOM), which developed eight guidelines to be covered in health plans starting 2012:

  • Annual well-woman visits
  • Screening for gestational diabetes
  • Human papillomavirus testing
  • Counseling for sexually transmitted infections
  • Counseling and screening for human immune-deficiency virus
  • Contraceptive methods and counseling
  • Breastfeeding support, supplies, and counseling
  • Screening and counseling for interpersonal and domestic violence
But as supporters of Raising Women’s Voices know, the story didn’t end there. The IOM’s guidelines were historic in scope, but vague on implementation details. For example, when it came to contraceptive coverage, insurance companies argued that compliance could mean covering one daily oral pill free of charge, while still requiring co-pays for all other kinds of hormonal contraceptives. Women expecting to benefit from the ACA’s guarantee instead found themselves paying out of pocket for patches, rings and more.

Mikulski’s Women’s Health Amendment envisioned contraceptive coverage, but didn’t directly enumerate it, and so the fight for contraceptive coverage has famously played out over the course of two Supreme Court battles to determine whether religiously-affiliated employers must provide coverage. But the fight has also been waged in less visible negotiations with insurance companies, advocates including RWV, members of Congress, and administration officials -- with the federal government ultimately issuing multiple rounds of guidance.

So, what’s happening now to expand coverage?

IOM recommended that its list be re-evaluated every five years to address scientific advances. For this cycle, HRSA awarded the American College of Obstetricians and Gynecologists (ACOG) a five-year grant to update the recommendations. Their process--dubbed the Women’s Preventive Services Initiative (WPSI) -- issued draft recommendations last month updating and expanding the scope of covered services, and building upon the lessons learned over the last four years.

For example, the proposed contraceptive guidelines recommend that “the full range of Food and Drug Administration (FDA)-approved contraceptive methods, effective family planning practices, and sterilization procedures be included.” Importantly, they also provide “clarification” and “implementation” recommendations that would make clear exactly what is meant by “full range” and “practices.” The recommendations provide explicit coverage for multiple visits, removal or cessation of method (such as removal of an IUD), counseling to achieve “patient-centered decision making,” and more.

For the first time ever, the recommendations also ensure coverage for over-the-counter contraceptive products without a prescription, the ability to pick up a 12-month supply at a time, the use of copper IUDs for emergency contraception, and coverage for male methods of contraception. Under current regulations, a woman can end up pushed into a more invasive tubal ligation because her partner’s vasectomy isn’t covered without cost-share. The draft recommendations wisely note that “the most appropriate choice to prevent pregnancy for a woman might include a vasectomy for her partner or use of male condoms.”

The WPSI group will send its final recommendations to HRSA on December 1, which is then expected to seek public comment. You can count on RWV to let you know when it’s time to weigh in with your comments! If approved, the new guidelines will go into effect for most health plans in 2018.

Another “Byllye-ism” from Byllye Avery

In last week’s newsletter, we shared some of the fabulous “Byllye-isms” that RWV Co-founder Byllye Avery presented at the Community Catalyst Advocates Convening in Atlanta. Our readers loved this feature! So, we are sharing another one of Byllye’s sayings this week.


Words of Wisdom from Byllye Avery


Byllye Avery (center) with Enroll Michigan Executive Director Dizzy Warren (left) and Community Catalyst (CC) President Kate Villers at the CC Annual Advocates Convening in Atlanta

In this trying political season, we all can use a little advice about how to minimize stress and achieve some balance in our lives. We can easily get ourselves over-committed and exhausted trying to fight all the forces that are promoting sexism, racism, homophobia and anti-immigrant views. We can suffer trauma when we view videos of police shootings of black men and women. We can blame ourselves for not doing enough, even as we rush from one meeting or rally to the next. We can neglect our loved ones, and even ourselves.

Byllye Avery, co-founder of Raising Women’s Voices and founder of the Black Women’s Health Imperative, had some words of wisdom for us when she gave the keynote address at last week’s Community Catalyst Annual Advocates Convening  in Atlanta. We are sharing the first four of her 10 “Byllye-isms” this week and will include more in future RWV newsletters. Credit for assembling
Byllye’s words into these colorful images goes to Dazon Dixon Diallo, President/CEO of SisterLove, a women’s AIDS and reproductive justice collective focusing on women, particularly those of African descent.

Other RWV leaders at the conference in Atlanta

In addition to Byllye Avery, three other members of the RWV national coordinating team were at the Community Catalyst conference. RWV Co-founder Lois Uttley, Regional Field Manager Cecilia Saenz Cecerra and Progressive States Policy and Advocacy Manager Ann Danforth were all on hand to bring the women’s health, reproductive health and LGBT health perspective to discussions. Uttley presented RWV’s My Health, My Voice campaign in a workshop, with an assist from Becerra, who explained how she led a team of translators in producing the Spanish-language version of our popular Step-by-Step Guide to Using Health Insurance.

RWV regional coordinators participating in the conference included Dizzy Warren from Enroll Michigan, Marsha Jones of The Afiya Center in Dallas, Janet Varon of Northwest Health Law Advocates, Kwajelyn Jackson from the Feminist Women’s Health Center in Atlanta and Kathy Waligora from
Everthrive Illinois, who gave a presentation on the contraceptive coverage work her organization has been doing. Kathy described her work advocating for the successful passage of Illinois’ Comprehensive Contraceptive Coverage Act, which is now the nation’s most comprehensive birth control law. She discussed the significant role EverThrive’s initial “secret shopper” research, which was funded by a RWV mini grant, played in their advocacy work. She also noted the importance of the bill’s gender inclusive language.


Helping women and families use their coverage effectively  

As more women and families gain health insurance for 
the first time, they need to understand how to use their coverage to get the care they need without unexpected costs. The Raising Women’s Voices My Health, My Voice campaign has supported RWV regional coordinators in a number of states to take action on health insurance literacy this year. They have helped women gain the confidence to use their new health insurance and take charge of their health through workshops, presentations, tabling, social media promotion, and material distribution. This week, we are providing a few examples of what they have been doing.
Stay tuned for news of how we are gearing up our health insurance literacy campaign for the start of Open Enrollment Period 4 on November 1!
Michigan: Enroll Michigan
Members of the Enroll Michigan network of CMS certified navigators completed 12 small group health insurance literacy sessions with a total of 211 participants. All attendees received a thorough explanation about how to use the health insurance they already have or, if still uninsured, how to enroll in new health coverage. Enroll Michigan also conducted a presentation at the River Rouge High School with 10 pregnant teen moms. The session included a general explanation of health insurance, as well as information on how to apply for and use it.

The consumer stories Enroll Michigan collected from women at these sessions highlighted the usefulness and versatility of the My Health, My Voice materials and trainings:
A senior at River Rouge High School had Medicaid and is pregnant. She did not have transportation to go to her prenatal doctor appointments. She learned that Medicaid provides transportation to her doctor appointments. She said that the transportation provided by her health insurance provider allowed her to go to all of her doctor appointments. She also shared the information with her grandmother, who now uses the transportation for her non-emergency medical appointments.

One participant stated that she recently got employer coverage, but since she previously had Medicaid for so long she didn't really understand how to use her new coverage. With the My Health, My Voice Step-By-Step Guide, she was able to get a better understanding of the actual medical bill and who pays what. She was shocked that the guide was so easy to understand as opposed to the information you receive from your employer.
One attendee brought her husband to the session, which was great. He thought the guide was universal and he was glad he stayed and attended the workshop. We had an open dialogue about health insurance in general that was very interesting.
West Virginia: WV FREE

WV FREE launched a strong social media campaign related to health insurance literacy and the Affordable Care Act, sharing My Health, My Voice materials via Facebook, Twitter and email.  One of WV FREE’s most exciting social media strategies was a 24-hour Twitter blast, during which WV FREE posted 24 times about the Raising Women’s Voices’ health insurance literacy materials. The total outreach for the Twitter blast was 7,400 impressions, and the Twitter blast had a total of 60 engagements through the 24-hour period.
WV FREE staffers found that while social media enabled them to reach a large number of people at one time, the best way to promote health insurance literacy materials to people and organizations is by doing so face-to-face. WV FREE presented RWV’s health literacy materials to staff members from the organization Recovery Point Charleston and to people at the KidStrong Conference. They also distributed a number of literacy materials to individuals and groups.

Wisconsin: Wisconsin Alliance for Women’s Health

The Wisconsin Alliance for Women’s Health (WAWH) incorporated RWV’s My Health, My Voice health literacy materials into its Wisconsin Policy Summit, and distributed more than 250 guides to attendees. A guest speaker, RWV regional coordinator Kathy Waligora of EverThrive Illinois (pictured in photo at right), was given dedicated time to provide an overview of RWV’s health literacy guide to the entire audience.

New York: Raising Women’s Voices-NY

Raising Women’s Voices-NY has distributed our literacy materials at a number of events, including at the New York City Parent Teacher Expo in Brooklyn, where they reached more than 500 parents and school officials. That event led to an invitation to do a presentation on health insurance literacy and enrollment opportunities during a PTA meeting in Washington Heights, at Kappa V School in Brooklyn and at a PTA meeting in the Bronx. RWV-NY Director Lois Uttley gave a presentation on our campaign at the annual breakfast of the Public Health Association of NYC and presented our materials at the U.S. Department of Health and Human Services’ NY/NJ Summit meeting, held in lower Manhattan. 

RWV-NY has received and filled orders for our materials from a number of groups across New York State, ranging from the Bedford Stuyvesant Family Health Center in Brooklyn and Centro Altagracia de Fe y Justicia in Washington Heights to the North Country Prenatal/Perinatal Council in Watertown.

Maine: Consumers for Affordable Health Care

Consumers for Affordable Health Care (CAHC), the RWV regional coordinator in Maine, operates a HelpLine, which is playing a critical role in helping callers better understand how to use their health insurance. The majority of the calls stem from confusion on payment terms—particularly, how the “grace period” works. As a result, CAHC created a flyer that explains exactly how to pay premiums and how grace periods work for Marketplace plans.

Callers are also confused about the Explanation of Benefits (EOB) documents received by mail. Many callers complained of not fully understanding when certain services are covered or denied. Consequently, CAHC created a sample EOB flyer. Both flyers are available upon request. There is also an explanation of what an EOB is in the RWV Step-By-Step Guide to Using Health Insurance, which can be downloaded from the My Health, My Voice website.


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