Teaching Health-Care Rights to Empower Patients

Health-care march. Photo by Neil Parekh/SEIU Healthcare 775NW; courtesy Creative CommonsBy Nur Afsar I worried that even 25 seats would be too many. But as people flooded through the doors, I saw that my worry was unwarranted: We quickly put out more chairs for what was to be an amazing learning experience.

Last week on May 2, my Partners for Change colleagues—Salma Asous, Syed Haider, Jamiela McDonnough—and I led a health-care rights workshop for parents of children enrolled in programs at the New Apartment Settlements' College Access Center in the Bronx. In the presentation titled “Know Your Rights,” we outlined patients’ rights to language access, financial assistance, emergency treatment, and accommodations for disabilities within the health-care system. Many of the parents were Spanish-speaking, so we brought a translator with us. After going over basics, we gave out colored cards corresponding to true and false and quizzed our audience, who answered most questions correctly. I could see my feelings of joy and pride mirrored on my fellow facilitators’ faces: We were making ourselves understood!

I had become interested in becoming a Partners for Change fellow because I was eager to take action. I had taken many courses that addressed how health disparities are linked to socioeconomic status. I was aware of the injustice of low-income minority populations being more likely to have poor health outcomes: They are less likely to be insured and subsequently less likely to have access to a primary-care physician. I couldn’t just sit with this information. What I needed was a plan, a way to help overcome the vast disparities in New York City and make a positive impact. This is exactly what I was able to begin doing through the Partners for Change fellowship.

Nur Asfarco-leads a health-care rights workshop. Photo by Sophie GrayTackling the System In this past year, I’ve learned a lot through my experience working as a Health Leads Advocate at New York Presbyterian’s Washington Heights Family Health Center and in seminars led by Shena Elrington, health justice attorney at New York Lawyers for Public Interest and our leader in residence. We learned about the ins and outs of our health-care system and how the Affordable Care Act (ACA) will bring about changes. In discussions we faced the harsh realities of the system, but Shena never let us leave our seminars without us feeling that students like we are can bring about change.

As a medical student, I was learning all the things I had to know to be a health-care provider, but in our Partners for Change seminars, we were learning about policy. We gained a lot of knowledge (more than I expected!), but what is it really worth if the information can’t be shared with those who really need it?

Stressing Advocacy After the session, there was a time for Q&A, and with Shena’s help, we were able to answer many of the parents’ questions and address their concerns. Some said they had been denied an interpreter when seeking care for their children or themselves. Others said they didn’t know where to go for financial assistance. As I expected, there were some questions about insurance. One person asked, “Why is there an income cut-off? I work hard to make money, why shouldn’t I receive Medicaid.” We explained the federal poverty level and discussed the Medicaid expansion to come through the ACA. Additionally, we addressed other options for people ineligible for Medicaid—undocumented immigrants, for example.

As an aspiring physician, I feel further equipped by my fellowship experience to inform patients of their options and help them maneuver through the changing system so they can take control of their own health. Informing parents of their rights—and steps they can take if their rights are violated—is a major form of patient activation. We stressed that they didn’t need lawyers. They can advocate for themselves, and I feel we went a long way to empower them with the knowledge and tools to do so.

Read more about Nur and our other contributors here.


Screening and Talk with Soul Food Junkies Director Byron Hurt

On Wednesday, Nov. 7, fellows of the Colin Powell Center will cosponsor the award-winning documentary Soul Food Junkies. The screening will include a talk with director/activist Byron Hurt. Soul Food Junkies will take place at 6:30 p.m. on the campus of the City College of New York in the North Academic Building (NAC) Rm. 1/202. RSVP to workshop@twn.org.

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Inside Project 18: Laying the Foundation for HIV Prevention

By Arielle Elmaleh-Sachs, Colin Powell leadership fellow HIV testing

I am sitting across from Marvin, and even though we just met fifteen minutes ago, he is sharing with me some of the most intimate aspects of his life—his social support, his sex life, his drug use, his feelings about HIV and his understanding about HIV prevention. We are the same age, and we are having an honest and open conversation about trust in relationships. He grapples with understanding how trust in a relationship can possibly protect him from HIV transmission.

At the end of our conversation, he will be administered an HIV test, and take a computerized self-interview where he will answer 300 questions concerning different aspects of his daily life. Then I will conclude the interview, sending him off with a bag of condoms, community referrals, and of course, his financial incentive.

Increasing HIV incidence At the NYU Steinhardt Center for Health, Identity, Behavior and Prevention Studies (CHIBPS), I have the opportunity to intern with Project 18 (P-18), a three-year longitudinal study investigating young men who have sex with men (YMSM) and their risk factors, behaviors, demographics and mental health outcomes.  Between 2001 and 2006 in New York City, there was a 33 percent increase in HIV incidence in YMSM, according to the New York City Department of Health and Mental Hygiene. Minorities, including Black youth and Hispanic youth, had respectively 126 percent and 81 percent increases in new infections, according to research by NYU professor Perry N. Halkitis. These statistics were similar to those in other cities in the United States.

P-18 looks at the YMSM as part of a syndemic, where these individuals struggle with multiple facets of their identity, including their sexual identity, the transition into adulthood, and their inclusion into their communities.  Further compounding the complexities of this population are the demographics and socio-economic status, which in turn, can contribute to increased risky sexual behavior, drug abuse, and HIV seroconversion.  Acknowledging this, P-18 follows a cohort of 600 YMSM biyearly for three years to try to uncover the behaviors and environmental factors that correlate with and predict HIV transmission. The study findings will allow interventions to be implemented to target vulnerable populations in the most susceptible areas, and especially in HIV prevention.

Appreciating Stigmas and Struggles As part of the research team for P-18, I engage in various tasks to gain a better appreciation of the research process. This includes participant assessments and drug testing, transcriptions of previous interviews, data entry and data cleaning, and literature reviews of HIV-positive populations. Working at CHIBPS has been a valuable experience, where I have had the privilege to strengthen many different skills: computer and database, data analysis, participant/interviewer techniques, approaches to public health investigation and medical knowledge. With a better appreciation of the stigma and struggles within the YMSM and HIV-positive populations, I have learned the necessity to engage with thoughtfulness, sensitivity and understanding. As a future doctor, I believe that the skills that I have acquired in this internship will help me to better understand the importance of psychosocial, environmental and behavioral factors as determinants of health.

Read about Arielle Elmaleh-Sachs and our other contributors here.