Hope for rheumatoid arthritis patients

Outreach program from the Global Healthy Living Foundation delivers resources to Hispanic communities

April 22, 2022     

Wigna C. was in constant pain. Her joints hurt. Everyday tasks were nearly impossible. She didn’t know what to do, and doctors seemed unable to help. The Puerto Rican resident felt the doctors were not listening to her, and after being misdiagnosed with Lupus she quickly lost her trust in the medical community. Wigna started taking “remedios caseros'' or home remedies—but nothing worked. She felt scared, isolated and alone.

arthritis patient hands

It wasn’t until she met with Dr. Oscar Soto-Raices that she received the proper diagnosis: rheumatoid arthritis (RA), an autoimmune disease affecting 1.3 million Americans, that mistakenly attacks joints and other tissues, causing pain, swelling and fatigue.

The diagnosis was hard for Wigna to accept — there is no cure for this chronic condition that disproportionately affects women. Because of her previous experiences with doctors, Wigna was reluctant to move forward with the recommended treatment from Dr. Soto-Raices. But this doctor was different. “Dr. Soto was patient and was always available to answer my questions,” Wigna said. “He told me I didn’t have to live with pain and that together we would make sure I would have a better quality of life.”

Today, Wigna has a new perspective on medicine — and life.

“It’s been a 180-degree change for me, both emotionally and physically,” she said. “I can do anything now. Had I known how dramatic the change would be, I would have done this [treatment] starting Day 1.”

Wigna’s experience has led her to advocate for others in her community who are living with RA. She is one of seven patient advisors for a new project through the Global Healthy Living Foundation, and its digital arthritis community CreakyJoints, called Hispanic Outreach Program Effect–Culturally Appropriate Education (HOPE – CAPE), which focuses on cultural training for rheumatologists and education for Hispanic RA patients.

Wigna said her patient-advisor role has empowered her to take control of her condition and help others. 

I don’t want other patients to give up — I want them to know they can get reliable information in Spanish and can absolutely have a better quality of life.

“I tell people it’s important to be well-informed and get factual information,” she said. “Even though RA does not have a cure, it is treatable, but you have to be proactive. The more you know about your condition, the more control you have when you are seeing your rheumatologist.”

Teresa Hernandez has a similar story. In her mid-20s, she started having unexplained pain in her knees and extreme fatigue. The young mother knew this was unusual for her age and tried seeking help. As a Mexican immigrant living in South Florida, her options were limited. She was uninsured and didn’t speak English fluently, so navigating the American healthcare system was daunting.

When Teresa was diagnosed with rheumatoid arthritis, she said it felt like her world was falling apart. “I was very depressed, I thought RA was only for older people.”

Initially, Teresa couldn't afford treatment in the U.S. and traveled back to Mexico for care. It took her about a year to get insurance so she could see a rheumatologist in Florida, who could educate her on the condition and provide better treatment.

Like Wigna, Teresa also tried unsuccessfully to resolve her symptoms with home remedies. Once Teresa’s doctor connected her to CreakyJoints Español and HOPE–CAPE, she said she learned so much more about treating her condition that she was inspired to help others.

“Many in the Hispanic community do not know that organizations like Global Healthy Living Foundation exist,” she said. “I don’t want other patients to give up—I want them to know they can get reliable information in Spanish and can absolutely have a better quality of life.”

Teresa and Wigna have been an integral part of the GHLF HOPE–CAPE outreach program, where they meet every week to review educational materials written in Spanish, discuss health disparities and barriers to access care, and share ways to reach the Hispanic community.

“The patients are really driving this conversation; they are part of the change — and that's really important," said Angel Tapia, GHLF’s Patient Advocate and Hispanic Community Outreach Manager. “This project gives patients the opportunity to broaden their knowledge as well as ours. We’re bridging the communication gap of what’s working and not working when it comes to RA patient care, allowing us to modify and make the process more effective.”

According to Pew Hispanic research, 71 percent of Hispanics obtain health information through their social networks and 79 percent of them act on this information. But the general health information available for the Hispanic community online heavily leans toward dangerous misinformation, which has led to low levels of diagnosis and a growing knowledge gap, according to the U.S. Bureau of Labor Statistics.

“Our patients are looking for resources,” Angel said. “Finding physicians can be difficult, and they don’t always know what questions to ask. We’re making more resources available, so they can advocate for themselves.” 

In addition to the patient advisory group, HOPE–CAPE created a pilot Spanish-language online educational hub and continued expanding their educational content through various social media and online channels to reach a wider audience of Hispanic patients through CreakyJoints Español. They have also worked diligently to promote the effectiveness of culturally competent patient education.

So far, the HOPE–CAPE program has been heralded a success. GHLF is currently collecting data and analyzing the pilot program and hopes to disseminate the HOPE–CAPE content widely, share learnings with key stakeholders, and expand the model to other disease-specific outreach in the near future. GHLF also manages and funds the John Whelton Arthur Virshup CreakyJoints South Florida Arthritis Clinic, which provides free rheumatology care to patients who cannot afford treatment.

GHLF’s HOPE–CAPE project was made possible, in part, by a grant from the Bristol Myers Squibb Foundation, whose mission is to promote health equity and improve the health outcomes of populations disproportionately affected by serious diseases.