When I was 32, I learned that my grandmother had died of complications from an abortion, a procedure considered illegal when she received it in 1960s Brooklyn.  As a child I believed she had been killed by an asthma attack. My grandfather never shared more details, and I never asked. Could it have been a friend who performed the abortion? Someone known in the community for helping women with “issues”? Did my grandparents hold hands as they nervously walked the streets of Bushwick, whispering to each other as they tried to find a safe place for her to terminate her pregnancy? I may never know. 

“Illegal” is a dangerous label. It forces people into secrecy. In the case of my grandmother’s abortion, that meant terminating a pregnancy without receiving safe care. She had already given birth to two kids but decided to terminate this third. While at the time “legal” medical abortions were given to white women of means in New York City on a limited, basis, my grandmother, a working-class Puerto Rican, didn’t have that option.

Photo Courtesy of Ivelyse

Sixty years later, women of color still don’t experience the unfettered access to abortion that  Roe v. Wade claims to protect. Where we live, how much money we make, and how we interact with each other either help or hinder our access to reproductive services. We don’t have to poke too far into U.S. history to see that Black and Brown’s bodily and reproductive autonomy infringements extend beyond abortion.

In my late twenties, I learned the dark history behind birth control: from the 1930s to the 1960s, birth control supporters argued that population control was the solution to poverty and the systemic oppression of poor Black and Brown communities. Sterilizations, known in Puerto Rico as “la operación,” were performed in several ways, including while some women recovered in hospital beds after giving birth. In these cases, patients were surgically sterilized without informed consent and given misleading information about the reversibility of the procedure. By the 1960s, one-third of the Puerto Rican female population was sterilized. Within three years after my grandmother died of her procedure, the Puerto Rican government repealed Law 116, the 1937 law which had allowed for forced sterilizations.

Even though Roe v. Wade changed federal abortion law starting in the 1970s, abortions often weren’t available, accessible, accepted, or safe for women of color. A study from 1976 noted that within three years of the Roe v. Wade decision, 80% of women in New York City who died from so-called “clandestine abortions” were women of color. Even after Roe v. Wade, women from affluent white communities would still face fewer risks and lower mortality rates compared to communities of color. Whether the procedure was deemed, “legal” didn’t guarantee safety for Black and Brown women. As Steven Polgar and Ellen S. Fried detailed in their article The Bad Old Days, “Poor and minority-group women were virtually precluded from obtaining safe, legal procedures, the overwhelming majority obtained by White women in the private hospital service on psychiatric indications.”

Nearly 50 years after Roe v. Wade, the United States Supreme Court and many conservative states are preparing to overturn the historic decision. Much like my grandmother, those communities continue to be impacted by the decisions of a group of primarily white and male legislators. These laws disproportionately impact Black and Brown folks’ reproductive health and their access to safe procedures.  

It is difficult for many people to obtain quality healthcare, but most especially women of color. Contemporary discussions around healthcare access must address the factors that disproportionately impact this group.

Finding Community in My Healthcare Journey

Long before I learned about my grandmother’s life-ending abortion, I had my first gynocological appointment. Seniors in  high school, my friends and I rode the subway for over an hour from the Bronx to Manhattan for  access to birth control. The quality of care available to us in the Bronx was different from Manhattan, and we wanted to make sure that nobody in our tight-knit community would recognize us and tell our parents what we were doing. The fear of la chancla is real.

We were all nervous and tried to hide it, joking loudly with each other as we sat in the waiting room, glad to be  there together. We all knew that getting on birth control was a wise decision. Sitting with my friends in that waiting room, I felt comforted by the power of my community.

According to a CDC report, Latino folks are two to three times more likely to develop STIs like gonorrhea, chlamydia, and syphilis than white folks. In addition, Latinx teenage pregnancy rates are the highest of all other ethnic demographics in the U.S. It’s easy to take these statistics at face value without understanding the greater context around accessibility. 

The lack of readily available birth control in my community meant I didn’t have the time to make the three-hour round-trip subway ride to return to Manhattan every three months to renew my prescription. As a result, I got pregnant not long after my last pill ran out. 

A few weeks after the pregnancy test showed positive, I shuffled into Planned Parenthood, petrified. After I checked in and got my intake form, I glanced around at the other women sitting quietly and sat down. A tear rolled down my cheek. I suddenly felt like I couldn’t breathe.

One of the women sitting across from me patted my knee and asked if I was okay. We made small talk, and I learned she was also there for an abortion. Other women in the waiting room joined in. We formed a shared sense of camaraderie. What had been a scary and lonely situation turned into a beautiful memory. I walked in alone, but I walked out with community.

Healthcare is complex; my journey goes far beyond the two situations I shared with you today. In writing this piece, I could have picked any angle to discuss, from conception to breastfeeding, IVF to abortion access, and endometriosis to vaginal discharge. Abortion is a personal choice, and a polarizing topic among certain groups. Regardless of personal stances on abortion or sex education, or other health experiences, information and access  for everyone are essential to an equitable medical system.

At this time, the future of the United States’ policy on reproductive care and access is uncertain. However, I know we don’t have to endure our healthcare journeys alone. 

We can communicate with each other. When the sterile, cold atmosphere of the healthcare system was isolating, I found solace in the community and the lived experiences of others who had gone through what I have. These experiences shaped my work today with my healthcare organization, Radical Health. Who else is there to look after our communities, if not us? We show people how to build, develop and tap into their community so that they “don’t have to Health alone.” 

If you don’t have a community at home, you can build it for yourself: whether you’re walking in and making new friends in the waiting room, chatting with the nurse on your way to the exam room, or even just posting to a Facebook or Reddit community online. When we organize, we help inform ourselves and others. So if you are facing your healthcare journey alone, remember that a community can support you when you are ready.

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Ivelyse is a visionary healthcare strategist and abolitionist building community at the intersection of mobile health and equity. She is the founder and CEO of Radical Health and a Commissioner on the New York City Commission on Gender Equity. Radical Health addresses health equity through community and tech and combines meaningful conversations with AI enabled tech that helps people understand what’s going on during a visit, build trust, and improve self advocacy. 

The post My Grandmother Died From Her Abortion. I Survived My Own. appeared first on Latina.

When she received her diagnosis, my mother had started a 90-day probation period at a new position for one of the top U.S. insurance companies. Her old job’s insurance was no longer in effect. And as the Affordable Care Act hadn’t yet been signed into law — this wouldn’t happen until 2014, six years after my mother’s diagnosis — her case fell under the qualification of a “pre-existing condition.” She was denied the private insurance plan and benefits from her new employer, and had to default to Medicaid. 

Given the advanced stage of her cancer, my mother would need specialized treatment to give her a fighting chance. But she was out of network for all specialized cancer hospitals under her Medicaid plan, and would have faced staggering out-of-pocket costs in order to be treated at the top local cancer facility in New York. Instead, she had to face her leukemia battle with a subpar quality of care. 

Maybe she would have survived if she had been able to afford a hospital that specialized in cancer treatment. Instead, when her condition deteriorated, she was admitted into an in-network hospital specializing only in trauma. 

Maybe she would have survived if we had been able to meet with her oncologist — who only made the rounds at 7 a.m., when I was at work — to talk about available options. As it was, I could barely get attending physicians to share information about her treatment plan. Even when I visited the facility after work, frequently finding my mom disoriented, I had to plead with nurses, tears streaming down my face, to check on her. 

Maybe she would have survived if her specimens hadn’t been lost after an important test, delaying further follow-up care and treatment. They never did find those specimens. 

Maybe she would have survived if her insurance plan would have afforded her a private room. After all, chemotherapy weakened her immune system, making shared spaces dangerous. But Medicaid meant she couldn’t afford one, leaving her to struggle with recurring infections.

It didn’t matter that my mom and I had worked in the healthcare field our entire careers. Our hands were tied when her cancer was classified as a pre-existing condition, simply because she went to the doctor a few weeks too early. She died in February 2009.

Inequity and the U.S. Healthcare System 

I’m certain you’ve heard healthcare horror stories like mine before. Perhaps, you might have a story of your own. For the average person of average means, American healthcare can feel more like a roulette wheel than a system sincerely designed to provide care. The stakes are far, far higher if you are Black or Latinx. 

As a young Afro-Latina girl growing up in the Bronx, I dreamed of becoming a doctor. I quickly understood that the healthcare industry didn’t have space for people like me. I often found myself the only young woman of color in these circles. I felt the pressure to conform in order to fit in, at times presenting a whitewashed, muted version of myself. When my mom died, I resolved to take what I’d learned from my job and what I’d lived through to change the future of healthcare for people of color. I knew my approach would have to be radical. I drew inspiration from the history of my community in the South Bronx and from the healthcare activism of the Young Lords and the Black Panthers.

Healthcare inequity for people of color results from several intersecting issues, each layered and complex. People of color face higher rates of, and deaths from, cancer; higher average blood pressures; more instances of infant and maternal mortality; and more diagnoses of diabetes, hypertension and obesity per capita. Moreover, due to generational distrust of racism in medical institutions, people from historically marginalized communities tend to ask fewer questions of doctors. This often leads to more frequent misdiagnoses and a lower overall quality of care. 

During the pandemic, this public health crisis grew exponentially more dire, especially within the Latinx community. While Latinx people make up only 18 percent of the U.S. population, the CDC estimates they account for roughly 29 percent of COVID cases nationwide. Latinx individuals contracted over half of California’s COVID cases, despite making up only 39% of state residents. And in New York City, the Latinx community has the highest number of COVID cases and deaths per 100,000 people of any ethnic group.

Healthcare Fluency

If we want to improve the quality of Latinx healthcare in 2021 and beyond, it’s crucial that our solutions address the systemic healthcare inequities that plague all communities of color. Tackling healthcare inequity will be difficult, but it’s not impossible. The key lies in building what I call Healthcare Fluency.

Anyone who is bilingual in Spanish knows there is a major difference between holding a basic conversation and being fluent. The same is true for healthcare. We can practice self-care, go get check-ups and follow the directions to sign up for our employer’s health insurance, but how many of us actually have a plan when there’s an emergency? Not many.

In order to create true healthcare equity for individuals of color, we must take a comprehensive approach — covering all four pillars of Healthcare Fluency: Fundamental Literacy, Scientific Knowledge, Cultural Perception and Personal Confidence.

Fundamental Literacy involves the ability to read, write and speak in the primary language used by a healthcare system. Literacy allows us to fill out medical forms, read our prescription instructions to take the correct dosage, and communicate with our healthcare providers.

Scientific Knowledge speaks to an informed understanding of science, anatomy, medical procedures and, generally, one’s rights within the healthcare system. Without such knowledge, a patient cannot give informed medical consent* to procedures such as hip replacements or vaccines. They may not know how to ask follow-up questions of their healthcare provider.

*It’s important to define informed medical consent as presented by the American Medical Association. Giving informed medical consent as a patient doesn’t mean that you need to have gone to medical school, or even that you need to understand the specific science behind, say, the development of an mRNA vaccine. Rather, the ability to give informed medical consent means that you can understand the diagnosis you have been given, that you understand the nature of recommended treatments and/or interventions, and the multiple outcomes (burdens, risks, or benefits) of all options, including forgoing treatment, so that you can make an informed decision about your healthcare options.

Cultural Perception of the healthcare system comes from the beliefs and information passed on to a patient by their family, friends and coworkers, as well as by other influential figures. If people around the patient are mistrustful of the healthcare system, or of a specific procedure, that will influence the patient’s opinion.

Let’s consider the early stages of COVID, when the CDC said that healthy people didn’t need masks, and limited-supply N95 masks were only important for healthcare providers.  Confusion about this guidance, combined with broader fear of the virus, created a perfect storm of “panic buying” and hoarding of N95 masks and respirators (and also toilet paper, of all things). That’s cultural perception, y’all. The current politicization of masks? Also cultural perception. The rumor that vaccines cause autism in children? Yep, you guessed it — cultural perception. The articles you see online or the Facebook posts your tía forwards to you all contribute to this.

Finally, Personal Confidence in the healthcare system is influenced by a patient’s individual trust of the system, including how comfortable they feel advocating for themselves in seeking the right care at the right time. When someone fears or mistrusts the system, they are more likely to avoid the doctor or seek to self-medicate.

Cultural Perception influences Personal Confidence, and these two factors together determine whether someone feels empowered in their healthcare journey. Folks who feel more confident and have trust in the healthcare system are more likely to proactively go to the doctor, ask followup questions about their treatment, and advocate for their personal needs when working with healthcare providers.

Implementation

The Latinx community will be better equipped to demand the care we deserve when we increase our ability to speak the language of healthcare and learn our rights. Yet, not everyone’s experience of healthcare fluency looks the same. Let’s consider what those four key areas of healthcare fluency look like in the healthcare journeys of two different folks. I’ll pose two hypothetical scenarios.

Hypothetical A

Carmen, 65 years old,  struggles with intense hip pain and is considering a hip replacement procedure.

She is a native Spanish speaker whose Fundamental Literacy in English is limited. She’s been to this doctor before, but she can’t read the prescription instructions or decipher the health insurance rules. When her provider asks her questions, she nods even though she doesn’t understand or gives one-word answers. The language barrier prevents her from understanding fully, and she doesn’t know she can request a translator for her appointments.

Because she was unable to ask more clarifying questions, Carmen has little to no Scientific Knowledge about the full diagnosis, procedure options, or the risks or benefits to completing her procedure. Technically, she is not able to give informed medical consent.

Carmen’s Cultural Perception of the American healthcare system has been negatively affected by others around her. She is generally distrustful of the medical system after hearing stories from her mother about mistreatment during her pregnancy, when she first moved to the U.S. So far, she has been self-medicating for her own hip pain with homemade recipes and natural remedies passed down from her abuela.

Carmen’s Personal Confidence in the healthcare system is very low. She is terrified of the doctor and knows that she might incur a massive bill during her hip replacement. She doesn’t trust prescription medications after losing her husband to an opioid overdose, and she is afraid of becoming hooked on pain pills. 

As a result, Carmen decides not to move forward with the procedure and instead simply endures the long term pain.

Hypothetical B

Marisa is a 35-year-old immunocompromised nurse reluctant to receive the COVID-19 vaccine. 

Unlike Carmen, Marisa has a high level of Fundamental Literacy and Scientific Knowledge because she speaks English fluently and works in the medical field. But she is still struggling when it comes to Cultural Perception and Personal Confidence. Although she’s a part of the healthcare community and knowledgeable about the vaccine’s  side effects, she and the other nurses at her hospital are skeptical about the shot after reading and sharing misinformation posted on Facebook. Marisa does not trust this new vaccine and believes it is politically motivated rather than backed by science. Despite her high risk of contracting a deadly case of COVID-19, Marisa decides against getting the vaccine.

It’s important to make the point here that I’m not passing judgement on Carmen and Marisa for feeling the way they do about the healthcare system. Healthcare Fluency is not about “right” or “wrong.” Their stories simply illustrate how, across educational backgrounds and literacy levels, Cultural Perception of healthcare and Personal Confidence in the system impact how we ask for and receive the care that we need.

Providers need to know how a patient’s own customs, and beliefs will influence how they navigate the healthcare system, or they won’t be able to connect. After all, you can’t give someone a vaccine if they don’t show up for it in the first place.

Two participants in a Radical Health Community Circle. Photography courtesy of Corey Torpie

The Nexus of Healthcare and Comunidad

There’s another key reason why most approaches to healthcare don’t work for much of the Latinx population in America. While our identities and experiences are not singular, as much of the media might suggest, many of our cultural experiences do stem from a strong sense of comunidad. 

It doesn’t matter whether we’re eating mofongo or tamales; dancing to the bachata, salsa or mambo; rolling our rr-s or turning them into j-s — Latinx folks often share a spirit of community-mindedness. There is a theme of togetherness and pride in the stories we share and the communal knowledge we pass down. When we are sick, our families often come together to care for one another. It should come as no surprise that Latinx individuals disproportionately take caregiving jobs.

Participants attending a Radical Health Community Circle. Photography courtesy of Corey Torpie

The American healthcare system, in contrast, does not offer community. In fact, healthcare journeys are often isolating experiences. That’s why I knew that the healthcare solution for my community was going to be created from the inside out, not from the outside in. 

In 2015, I started inviting an array of healthcare stakeholders — patients, teachers, doctors, nurses and abuelas alike — to have a seat at the table (quite literally, my kitchen table) for a conversation. We leaned on each others’ lived experiences to imagine a new system of healthcare, accessible and equitable for everyone. 

Radical Health’s 3 Step Plan

The result was Radical Health, my organization in the South Bronx. We facilitate communal discussion using traditional indigenous conversation-circle practices, then share that data with public health organizations to make systemic, positive change. Unlike traditional approaches that focus only on Fundamental Literacy and Scientific Knowledge, Radical Health bridges those elements by also addressing Cultural Perception and Personal Confidence. 

In turn, Radical Health doesn’t provide clinical support, but rather addresses inequality in two ways: engaging the community and equipping patients to navigate the medical system. To accomplish the latter, we provide education to help folks understand their diagnoses, manage their health status and ask important questions. One of our most popular support services is our text-based Radical Relay app that helps patients learn their healthcare rights. Additionally, our work extends into multiple healthcare spheres, from pregnancy and postnatal care to opioid addiction and environmental pollution effects. 

In the six years since we incorporated, we’ve hosted more than 3,255 hours of people-to-people listening sessions. This hyper-local approach has proved successful in projects like the Bronx Action Plan. Just like my kitchen table conversation back in 2015, our restorative health circles garnered firsthand accounts from community members, doctors and neighborhood leaders. 

A snapshot of Radical Health’s restorative health circle findings

Using our proprietary data analysis system, we used the information collected in these circles to assist the New York City Housing Authority and the New York City Health Department to identify critical gaps in the local healthcare system. Ultimately, we chose to implement the Action Plan in a Bronx community hit hard by the opioid epidemic. We distributed hundreds of Narcan kits, and equipped countless users with resources, information and support to help prevent overdose deaths.

Conclusion

Would my mother have survived cancer if she had been more fluent in the healthcare system? If she had been able to afford the cost of experimental treatments, or care at a hospital specializing in leukemia? I cannot say for certain. What is certain to me, though, is that all the obstacles in her way made it so she didn’t even stand a chance. 

When you know the rules and trust the system, you’re more likely to ask questions and expand your knowledge about your health. Empowering people to achieve Healthcare Fluency is an integral goal of Radical Health’s mission for health equity. The language of the healthcare system is complicated, and there are very few who fully understand how to navigate it. In fact, 77 million people in the U.S. reported that they don’t understand basic health information — and it’s costing our system billions of dollars each year!

It doesn’t matter if we’re considering a hip replacement, planning to have a baby, or worrying about getting a vaccine — a lack of Healthcare Fluency will almost certainly hurt our ability to get the care we need and deserve. As we think about the future of healthcare for Latinx people and other people of color, the worst scenario for us is to continue to be silent, unaware of our rights.

That is why transforming the healthcare system ultimately depends on meaningful, organic conversations. You can uplift marginalized voices in your community by sharing the experiences of a neighbor, a friend or your abuela. By leaning on our collective and individual lived experiences, we can achieve an equitable healthcare system that leaves no one behind. 

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Ivelyse Andino is the award-winning telehealth founder and CEO of the first Latinx-owned Public Benefit Corporation in New York state, Radical Health, which is working to create an equitable medical system and empower underserved communities through healthcare fluency.

The post Op-Ed: If We Want Healthcare Equity, We Need to Get Radical appeared first on Latina.