Analysis Health Systems

Why the Affordable Care Act is Critical For Women Living With HIV

Brook Kelly

As we hold our breath to see how the Court will decide the fate of the ACA, now is a good time to remind ourselves of the importance of health care reform for women living with HIV and affected by HIV.

In January 2012, Women Organized to Respond to Life-threatening Diseases (WORLD) and 16 other organizations led by Lambda Legal filed with the Supreme Court a friend-of-the-court brief in support of the Affordable Care Act (ACA). This week, the Supreme Court held a three-day hearing on the constitutionality of health care reform. As we hold our breath to see how the Court will decide the fate of the ACA, now is a good time to remind ourselves of the importance of health care reform for women living with HIV and affected by HIV.

We know that the HIV epidemic thrives on a lack of quality, acceptable, affordable and accessible health care. We also know that discrimination in health care based on race, ethnicity, gender and gender identity, pre-existing conditions, and economic status is rampant. No one law can solve all of these problems but the Affordable Care Act is a first and necessary step toward reforming our health care system to better meet the needs of all people.

The full implementation of health care reform is vital to women living with and affected by HIV for a number of reasons:

1. Health care reform will increase access to health insurance by expanding the Medicaid program to all people who live below 133 percent of the federal poverty level (FPL) period – disability status will no longer be required.

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This will have a hugely positive impact on the health of all people living with HIV since currently 29 percent of HIV-positive people have no health insurance whatsoever often because they have not become so sick as to be considered disabled for the purposes of Medicaid eligibility. Removing the cruel disability requirement from Medicaid eligibility for those living below 133 percent of the FPL is especially important for HIV-positive women. Women living with HIV, 76 percent of whom have children under 18 living in their households, as well as other care-taking responsibilities, cannot afford for their health to deteriorate in order to qualify for health care. Nor should they have to. Removing these barriers and expanding the Medicaid program is a key to reducing the health disparities experienced by so many women living with HIV.

2. Health care reform will bring down health care costs for women living with HIV. 1 in 2 women report delaying health care visits due to costs.

For a woman living with HIV, delaying vital health care needs and paying out of pocket costs for care can have a devastating impact on her wellbeing and her financial security. Health care reform will bring down health care costs for women by requiring insurance companies as well as Medicaid to cap out-of-pocket expenses, and ban insurance companies from dropping women from coverage when they get sick.

3. Health care reform will prohibit health insurance discrimination against women and against people with pre-existing conditions, including HIV.

Currently, women face shocking levels of discrimination in health care coverage. A 22-year-old woman can be charged insurance premiums 150 percent times higher than a 22-year-old man with a similar health history. Pregnancy and history of previous pregnancy are considered pre-existing medical conditions as is a history of intimate partner violence. Under current practice, women living with HIV can be denied health insurance solely as a result of their HIV status, forcing many to cobble together health care coverage from different sources such as ADAP, Medicaid, and Medicare. Navigating these programs can be time-consuming and difficult. Health care should not be a full time job! Getting medications covered requires women to live below a certain income level – in many cases, well under the poverty line.

The Act already prohibits discrimination against children for pre-existing conditions and in 2014 will prohibit sex and health status discrimination against all people. These protections will be a long-overdue fulfillment of HIV-positive women’s human rights.

4. Health care reform will provide greater health care security.

Less than 50 percent of women have the option of obtaining health insurance through a job and when jobs change, health coverage is often lost or broken. Studies have shown the importance of building trusting and long-lasting relationships with HIV medical providers. Women can’t afford to take breaks from medications because of a lack of coverage or unaffordable co-pays. Reliable, continuous health coverage with a trusted provider is essential for women living with HIV. Spotty insurance coverage makes this impossible.

Through the creation of state-based health insurance exchanges, the ACA will ensure that more women have dependable and continuous uninterrupted coverage for themselves and their families regardless of their employment status.

5. Health care reform will create a health care system that better meets women’s unique needs.

Currently, women are at the mercy of their health insurance provider for many essential and life-saving prevention services. With the implementation of the ACA, several basic and necessary services will be offered and covered by all health care plans for free. Some of these critical services include well-women visits that cover prenatal and postnatal counseling and care; HIV and STI testing and counseling; human papillomavirus testing; breastfeeding support, supplies, and counseling; and screening and counseling for domestic violence. That means these services will be offered to all women and that no co-pays and no deductibles can be charged for any of them! 

The provision of these prevention services, free of cost, mean a phenomenal health care win for all women and especially for women living with HIV. As we know, gender-based violence contributes to women’s’ vulnerability to HIV and hampers the wellness of women living with HIV.

The fact that the ACA recognizes the far-reaching nature of violence in women’s lives by insisting that intimate partner violence screening and counseling be a free service is an extremely important step in coming to terms with what our Attorney General Eric Holder says is the “staggering” amount of intimate partner violence experienced by women. Moreover, these prevention services for women can begin to address some of the discrimination HIV-positive women face in exercising their reproductive options. 

HIV-positive women are often not offered sexual and reproductive health care services such as prenatal counseling, STI testing, or human papillomavirus (HPV) testing because doctors assume that people’s sex lives end with an HIV-positive diagnosis. We know this is not true. Many women living with HIV have happy and healthy sex lives and need these types of reproductive health services as much if not more than other women in order to stay healthy.

The Affordable Care Act is an amazing opportunity to reform our health care delivery system. It lowers costs for insurance, prohibits gender and health status discrimination, provides continuous health care coverage, and prioritizes women by fully covering our key health care needs. It would be a national tragedy if the Supreme Court finds the bill to be unconstitutional because it requires all people to be insured. Expanding coverage to everyone should be our national goal, not our fear.

Analysis Politics

The 2016 Republican Platform Is Riddled With Conservative Abortion Myths

Ally Boguhn

Anti-choice activists and leaders have embraced the Republican platform, which relies on a series of falsehoods about reproductive health care.

Republicans voted to ratify their 2016 platform this week, codifying what many deem one of the most extreme platforms ever accepted by the party.

“Platforms are traditionally written by and for the party faithful and largely ignored by everyone else,” wrote the New York Times‘ editorial board Monday. “But this year, the Republicans are putting out an agenda that demands notice.”

“It is as though, rather than trying to reconcile Mr. Trump’s heretical views with conservative orthodoxy, the writers of the platform simply opted to go with the most extreme version of every position,” it continued. “Tailored to Mr. Trump’s impulsive bluster, this document lays bare just how much the G.O.P. is driven by a regressive, extremist inner core.”

Tucked away in the 66-page document accepted by Republicans as their official guide to “the Party’s principles and policies” are countless resolutions that seem to back up the Times‘ assertion that the platform is “the most extreme” ever put forth by the party, including: rolling back marriage equalitydeclaring pornography a “public health crisis”; and codifying the Hyde Amendment to permanently block federal funding for abortion.

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Anti-choice activists and leaders have embraced the platform, which the Susan B. Anthony List deemed the “Most Pro-life Platform Ever” in a press release upon the GOP’s Monday vote at the convention. “The Republican platform has always been strong when it comes to protecting unborn children, their mothers, and the conscience rights of pro-life Americans,” said the organization’s president, Marjorie Dannenfelser, in a statement. “The platform ratified today takes that stand from good to great.”  

Operation Rescue, an organization known for its radical tactics and links to violence, similarly declared the platform a “victory,” noting its inclusion of so-called personhood language, which could ban abortion and many forms of contraception. “We are celebrating today on the streets of Cleveland. We got everything we have asked for in the party platform,” said Troy Newman, president of Operation Rescue, in a statement posted to the group’s website.

But what stands out most in the Republicans’ document is the series of falsehoods and myths relied upon to push their conservative agenda. Here are just a few of the most egregious pieces of misinformation about abortion to be found within the pages of the 2016 platform:

Myth #1: Planned Parenthood Profits From Fetal Tissue Donations

Featured in multiple sections of the Republican platform is the tired and repeatedly debunked claim that Planned Parenthood profits from fetal tissue donations. In the subsection on “protecting human life,” the platform says:

We oppose the use of public funds to perform or promote abortion or to fund organizations, like Planned Parenthood, so long as they provide or refer for elective abortions or sell fetal body parts rather than provide healthcare. We urge all states and Congress to make it a crime to acquire, transfer, or sell fetal tissues from elective abortions for research, and we call on Congress to enact a ban on any sale of fetal body parts. In the meantime, we call on Congress to ban the practice of misleading women on so-called fetal harvesting consent forms, a fact revealed by a 2015 investigation. We will not fund or subsidize healthcare that includes abortion coverage.

Later in the document, under a section titled “Preserving Medicare and Medicaid,” the platform again asserts that abortion providers are selling “the body parts of aborted children”—presumably again referring to the controversy surrounding Planned Parenthood:

We respect the states’ authority and flexibility to exclude abortion providers from federal programs such as Medicaid and other healthcare and family planning programs so long as they continue to perform or refer for elective abortions or sell the body parts of aborted children.

The platform appears to reference the widely discredited videos produced by anti-choice organization Center for Medical Progress (CMP) as part of its smear campaign against Planned Parenthood. The videos were deceptively edited, as Rewire has extensively reported. CMP’s leader David Daleiden is currently under federal indictment for tampering with government documents in connection with obtaining the footage. Republicans have nonetheless steadfastly clung to the group’s claims in an effort to block access to reproductive health care.

Since CMP began releasing its videos last year, 13 state and three congressional inquiries into allegations based on the videos have turned up no evidence of wrongdoing on behalf of Planned Parenthood.

Dawn Laguens, executive vice president of Planned Parenthood Action Fund—which has endorsed Hillary Clinton—called the Republicans’ inclusion of CMP’s allegation in their platform “despicable” in a statement to the Huffington Post. “This isn’t just an attack on Planned Parenthood health centers,” said Laguens. “It’s an attack on the millions of patients who rely on Planned Parenthood each year for basic health care. It’s an attack on the brave doctors and nurses who have been facing down violent rhetoric and threats just to provide people with cancer screenings, birth control, and well-woman exams.”

Myth #2: The Supreme Court Struck Down “Commonsense” Laws About “Basic Health and Safety” in Whole Woman’s Health v. Hellerstedt

In the section focusing on the party’s opposition to abortion, the GOP’s platform also reaffirms their commitment to targeted regulation of abortion providers (TRAP) laws. According to the platform:

We salute the many states that now protect women and girls through laws requiring informed consent, parental consent, waiting periods, and clinic regulation. We condemn the Supreme Court’s activist decision in Whole Woman’s Health v. Hellerstedt striking down commonsense Texas laws providing for basic health and safety standards in abortion clinics.

The idea that TRAP laws, such as those struck down by the recent Supreme Court decision in Whole Woman’s Health, are solely for protecting women and keeping them safe is just as common among conservatives as it is false. However, as Rewire explained when Paul Ryan agreed with a nearly identical claim last week about Texas’ clinic regulations, “the provisions of the law in question were not about keeping anybody safe”:

As Justice Stephen Breyer noted in the opinion declaring them unconstitutional, “When directly asked at oral argument whether Texas knew of a single instance in which the new requirement would have helped even one woman obtain better treatment, Texas admitted that there was no evidence in the record of such a case.”

All the provisions actually did, according to Breyer on behalf of the Court majority, was put “a substantial obstacle in the path of women seeking a previability abortion,” and “constitute an undue burden on abortion access.”

Myth #3: 20-Week Abortion Bans Are Justified By “Current Medical Research” Suggesting That Is When a Fetus Can Feel Pain

The platform went on to point to Republicans’ Pain-Capable Unborn Child Protection Act, a piece of anti-choice legislation already passed in several states that, if approved in Congress, would create a federal ban on abortion after 20 weeks based on junk science claiming fetuses can feel pain at that point in pregnancy:

Over a dozen states have passed Pain-Capable Unborn Child Protection Acts prohibiting abortion after twenty weeks, the point at which current medical research shows that unborn babies can feel excruciating pain during abortions, and we call on Congress to enact the federal version.

Major medical groups and experts, however, agree that a fetus has not developed to the point where it can feel pain until the third trimester. According to a 2013 letter from the American Congress of Obstetricians and Gynecologists, “A rigorous 2005 scientific review of evidence published in the Journal of the American Medical Association (JAMA) concluded that fetal perception of pain is unlikely before the third trimester,” which begins around the 28th week of pregnancy. A 2010 review of the scientific evidence on the issue conducted by the British Royal College of Obstetricians and Gynaecologists similarly found “that the fetus cannot experience pain in any sense prior” to 24 weeks’ gestation.

Doctors who testify otherwise often have a history of anti-choice activism. For example, a letter read aloud during a debate over West Virginia’s ultimately failed 20-week abortion ban was drafted by Dr. Byron Calhoun, who was caught lying about the number of abortion-related complications he saw in Charleston.

Myth #4: Abortion “Endangers the Health and Well-being of Women”

In an apparent effort to criticize the Affordable Care Act for promoting “the notion of abortion as healthcare,” the platform baselessly claimed that abortion “endangers the health and well-being” of those who receive care:

Through Obamacare, the current Administration has promoted the notion of abortion as healthcare. We, however, affirm the dignity of women by protecting the sanctity of human life. Numerous studies have shown that abortion endangers the health and well-being of women, and we stand firmly against it.

Scientific evidence overwhelmingly supports the conclusion that abortion is safe. Research shows that a first-trimester abortion carries less than 0.05 percent risk of major complications, according to the Guttmacher Institute, and “pose[s] virtually no long-term risk of problems such as infertility, ectopic pregnancy, spontaneous abortion (miscarriage) or birth defect, and little or no risk of preterm or low-birth-weight deliveries.”

There is similarly no evidence to back up the GOP’s claim that abortion endangers the well-being of women. A 2008 study from the American Psychological Association’s Task Force on Mental Health and Abortion, an expansive analysis on current research regarding the issue, found that while those who have an abortion may experience a variety of feelings, “no evidence sufficient to support the claim that an observed association between abortion history and mental health was caused by the abortion per se, as opposed to other factors.”

As is the case for many of the anti-abortion myths perpetuated within the platform, many of the so-called experts who claim there is a link between abortion and mental illness are discredited anti-choice activists.

Myth #5: Mifepristone, a Drug Used for Medical Abortions, Is “Dangerous”

Both anti-choice activists and conservative Republicans have been vocal opponents of the Food and Drug Administration (FDA’s) March update to the regulations for mifepristone, a drug also known as Mifeprex and RU-486 that is used in medication abortions. However, in this year’s platform, the GOP goes a step further to claim that both the drug and its general approval by the FDA are “dangerous”:

We believe the FDA’s approval of Mifeprex, a dangerous abortifacient formerly known as RU-486, threatens women’s health, as does the agency’s endorsement of over-the-counter sales of powerful contraceptives without a physician’s recommendation. We support cutting federal and state funding for entities that endanger women’s health by performing abortions in a manner inconsistent with federal or state law.

Studies, however, have overwhelmingly found mifepristone to be safe. In fact, the Association of Reproductive Health Professionals says mifepristone “is safer than acetaminophen,” aspirin, and Viagra. When the FDA conducted a 2011 post-market study of those who have used the drug since it was approved by the agency, they found that more than 1.5 million women in the U.S. had used it to end a pregnancy, only 2,200 of whom had experienced an “adverse event” after.

The platform also appears to reference the FDA’s approval of making emergency contraception such as Plan B available over the counter, claiming that it too is a threat to women’s health. However, studies show that emergency contraception is safe and effective at preventing pregnancy. According to the World Health Organization, side effects are “uncommon and generally mild.”

Commentary Sexual Health

‘Not the Enemy, But the Answer’: Elevating the Voices of Black Women Living With HIV

Dazon Dixon Diallo

National HIV Testing Day is June 27. But for longtime advocates, ensuring that the women most affected by the epidemic can get and influence care and policy is the work of many years.

I met Juanita Williams in the mid-1980s. She was the first client at SisterLove, the then-new Atlanta nonprofit I founded for women living with AIDS.

June 27 is National HIV Testing Day, and many women will be tested during the observance. But when I met Williams, HIV was a growing reality in our communities, and women were not even recognized as a population at risk for HIV at that time.

This lack of understanding was reflected in women’s experiences when seeking care. Williams’ attempt to get a tubal ligation had been met with fear, ignorance, and hostility from a medical team who informed her she had AIDS. Not only did they refuse to provide her the medical procedure, the hospital staff promptly ushered her down the back staircase and out the door. Williams was left without information or counseling for what was devastating news.

A Black woman who grew up in Syracuse, New York, she had moved to her family’s home state of South Carolina. Her first major decision after her diagnosis was to leave South Carolina and move to Atlanta, where she believed she would get better treatment and support. She was right, and still, it wasn’t easy—not then and not now. Even today, Williams says, “Positive people are not taken seriously, and positive women are taken even less seriously. People think positive people are way down on the totem pole.”

As communities across the United States observe National HIV Testing Day and emphasize taking control of our health and lives, women’s voices are an essential but still neglected part of the conversation. The experiences of Black women living with HIV, within the broader context of their sexual and reproductive health, highlight the need to address systemic health disparities and the promise of a powerful movement at the intersection of sexual and reproductive justice.

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The urgency of adopting an intersectional approach to sexual and reproductive health comes to light when considering the disproportionate impact of HIV on women of color. Black women account for 69 percent of all HIV diagnoses among women in the South. Advocates also acknowledge the history of biomedical and reproductive oppression that Black women have suffered throughout American history, including forced pregnancy and childrearing during slavery to forced sterilization afterward. Keeping these matters in mind helps us understand how the HIV epidemic is a matter of sexual and reproductive justice.

Taking seriously the perspectives of women such as Williams would amplify our collective efforts to eradicate HIV’s impacts while elevating women’s health, dignity, and agency. This is especially pressing for women living with HIV who experience the greatest disparities and access barriers to the broad spectrum of reproductive health, including contraception and abortion.

The policy context has created additional barriers to advancing the reproductive health of women living with HIV. For example, the 2015 National HIV AIDS Strategy Update neglected to mention family planning or reproductive health services as arenas for providing HIV prevention care. Yet, in many instances, a reproductive health clinic is a woman’s primary or only point of access to health care in a given year. Providing HIV prevention and care in family planning clinics is a way to provide a space where women can expect to receive guidance about their risk of exposure to HIV.

As advocates for women living with HIV, we at SisterLove are committed to ensuring that human rights values are at the center of social change efforts to protect and advance the sexual and reproductive health and rights of women and their families. We work to transform the policy frame to one that asserts women’s agency to make decisions that are best for themselves and their loved ones. We draw strength from the resilience and determination of the women we serve.

Several years after becoming deeply involved with SisterLove, Williams became an advocate for her own reproductive health and began speaking out on behalf of other Black women living with HIV. She eventually became a trainer, counselor, and health outreach worker.

Later, in 2004, Williams was the only woman living with HIV invited to be a main speaker at the historic March for Women’s Lives in Washington, D.C. She is a mother, grandmother, and great-grandmother who has returned to South Carolina, where she teaches other women living with HIV about sexual and reproductive justice and human rights. Williams uses her own story and strength to help other women find theirs.

“Give [women living with HIV] a voice and a platform for that voice,” she has said. “Give a safe place to let their voices be heard and validate them …. We need positive women’s voices to continue to fight the stigma. How do we do that? We tell our stories and reflect each other. I am not the enemy, I am the answer.”

Advocates need strength as we work at many critical intersections where the lives of women and girls are shaped. We cannot address HIV and AIDS without access to contraception and abortion care; health and pay equity; recognition of domestic and gender-based violence; and the end of HIV criminalization. And as advocates for sexual and reproductive health in our communities, SisterLove is working alongside our sisters to support National HIV Testing Day and ensure all people have the information, tools, and agency to take control of their health.

Elevating the health and dignity of people living with HIV calls for special attention to the epidemic’s implications for women of color and Black women, particularly those within marginalized communities and in the Deep South. The voices and leadership of the most affected women and people living with HIV are essential to making our efforts more relevant and powerful. Together, we can advance the long-term vision for sexual and reproductive justice while working to eradicate HIV for all people.