The PFF Celebrates Black History Month with Inspiring Stories, Highlights Need for Diversity in Research
This year’s theme for Black History Month is “Black Health and Wellness,” which provides an important opportunity to consider how to decrease health disparities in care. In the case of pulmonary fibrosis (PF) — a progressive, debilitating lung disease that causes scarring in the lungs — recent studies suggest the need for additional research with diverse patient populations to better understand the disease and treatment options. While there is not a cure for PF yet, there are several effective treatments, such as pulmonary rehabilitation, supplemental oxygen, lung transplantation, and “antifibrotics,” — which are medications shown to slow the decline in lung function by nearly 50%.
Common symptoms of PF include a dry, chronic cough, shortness of breath, and fatigue. Risk factors vary by patient and may include being over age 60 years, a history of smoking, and a family history of interstitial lung disease (ILD). The cause is often unknown, as is the case for people living with idiopathic pulmonary fibrosis (IPF), the most common form of the disease.
Ethnic and Racial Disparities in the Presence of PF
Whether ethnicity or race plays a role in the progressive nature of the disease requires further exploration. However, a growing body of research suggests not all ethnic/racial groups are equally predisposed to the development of IPF. In one study on IPF, when controlling for age and gender, the effect of race/ethnicity was a significant predictor of dying from the disease. While Black patients were less likely than white patients to be diagnosed with IPF, Black patients died at a younger age. Other factors, such as genetics, differing exposures, and socio-economic disparities, may account for these differences.
In another study, Black patients with ILD were diagnosed at a much younger age than their white counterparts, but they had a longer survival time. This multi-center study tracked patients with ILD over a 10-year period.
Additionally, higher death rates were prevalent among Black and Hispanic patients with PF who had been “wait-listed” for a lung transplant than white patients on the list, according to this study. Researchers found that these disparities in survival were attributable in part to worse lung function among both Blacks and Hispanics compared to whites at the time of listing for lung transplantation. This suggests that race/ethnicity could play a crucial role in the pre-referral medical care given to patients, the timing of referral, and disease characteristics.
The Pulmonary Fibrosis Foundation (PFF) advocates for more research and is actively working to increase diversity of representation. As a senior member of the organization, I participated in a webinar on this topic titled “Diversity in Research: Benefits for All” hosted by Junelle Speller, Vice President of the PFF Registry. You can find the webinar here.
PFF Volunteers Share Their Stories to Raise Awareness
PFF volunteer Ambassadors and Support Group Leaders share their experiences with PF to raise awareness among at-risk populations. Improving understanding of the disease could help drive earlier diagnoses and improve overall quality of life for those with PF. Some of these volunteers include:
Valeria Hatcher: Encouraging patients to have patience with themselves
Valeria Hatcher was busy working and living a happy life, but she noticed she would not take the stairs as often due to shortness of breath. This was especially challenging because she lived in an upstairs apartment, so she started having her sons bring the groceries upstairs. Valeria discovered what was causing her issues when she was diagnosed with PF in 2009.
PF affects different people at different times and in a myriad of ways, and Valeria recognized that she could only gather so much information on her own. She began attending support group meetings and encourages other patients and caregivers to do the same. “Chances are, someone has been down the same road before you,” she says.
Valeria’s diagnosis has not made her less happy, but it has forced her to focus on the logistics of living with supplemental oxygen. For example, she calls ahead before running errands to make sure there are not any surprises and bases how much oxygen she needs on whether buildings have only stairs or an elevator. Her advice for patients with PF is to have patience with yourself and to join a support group.
Stephanie Golden: Channeling grief by advocating for others
When Stephanie Golden’s mother developed shortness of breath, everyone thought it was just a matter of needing to lose weight and exercise more. It was a year and a half before she received a proper diagnosis. After her mother’s death, Stephanie wished she could get back that precious time lost while waiting for diagnosis. Stephanie does not want any other daughters to lose their mothers to PF.
She now works to help educate people on how to recognize the early warning signs of this disease. Sharing her message of hope and inspiration to others affected by PF helps Stephanie channel her grief by advocating for others walking a similar journey.
Janet Mann: Proving that perseverance can make you a fighter
When Janet Mann was diagnosed with IPF in 2007, she felt like her whole world was coming to an end. Despite her initial shock, Janet found it better to be positive and decided what she needed most was a strong support system. After diagnosis, Janet became an advocate for more hopeful thinking, surrounding herself with positive people and becoming a support group leader. PF had not slowed her down. In fact, Janet continued traveling, attending sporting events, and working on special projects, all while carrying her oxygen tank.
Today, she is no longer on oxygen thanks to a double lung transplant in 2020. Janet credits her perseverance for getting her to where she is. She found that fighting the disease and not allowing it to define her or her life can be helpful in navigating PF, and she hopes others adopt that same mindset.
In honor of Black History Month, the PFF is expanding its “Portraits of PF” Facebook series to highlight stories from our diverse community of patients, caregivers, and healthcare professionals affected by PF. We also offer personal stories in the “Life With Pulmonary Fibrosis” video series on the PFF’s YouTube channel.
PFF Patient Resources
The PFF provides disease education and research to help patients, loved ones, and healthcare providers fully understand the illness. Patients can utilize the resources and support provided within the PFF Help Center. In addition, the PFF’s patient educational resources include the PFF Care Center Network, support groups, ongoing webinars, downloadable information guides and checklists, and more. A library of educational and inspirational videos from patients, physicians, and caregivers is available to browse here.
Learn more by visiting AboutPF.org, contacting the PFF Help Center at 844.TalkPFF (844.825.5733), or emailing help@pulmonaryfibrosis.org.
About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and health care providers. The PFF has a four-star rating from Charity Navigator and is an accredited charity by the Better Business Bureau (BBB) Wise Giving Alliance. The Foundation has met all of the requirements of the National Health Council Standards of Excellence Certification Program® and has earned the Guidestar Platinum Seal of Transparency. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or 312.587.9272 from outside the U.S.
