What is Pulmonary Fibrosis?
PF impacts over 250,000 Americans and there are approximately 50,000 new cases that are diagnosed each year. A study1 on ethnic and racial differences in the presence of IPF showed that Black patients made up 5.1% of the patient population. PF is a progressive, debilitating lung disease which causes scarring within the lungs. Common symptoms of PF are a dry, chronic cough, shortness of breath, and fatigue and risk factors include being over 60 years old, a history of smoking, certain environmental and occupational exposures, and having a family history of PF.
While PF currently has no cure, several effective treatments exist, including pulmonary rehabilitation, supplemental oxygen, lung transplantation, and medications. Also, promising clinical trials provide opportunities for those living with PF to participate in and drive research in new therapies, treatments and devices.
Studies Point to Inequities
Research has revealed that not all ethnic groups are equally predisposed to the development of the most common type of PF, idiopathic pulmonary fibrosis (IPF). A 2018 study1 showed that when compared with patients of other races, African-Americans with ILD were younger at diagnosis (56 years versus 67 years), leading to the conclusion that African-Americans demonstrate a unique phenotype associated with younger age at ILD diagnosis and perhaps longer survival time. In late 2022, 28-year-old rapper B. Smyth died after a long battle with PF, an all too real example of a young African-American man who lived with this disease.
Another study2 evaluated patients on the waiting list for a lung transplant, and found higher death rates among African-American and Hispanic patients with PF compared to white patients. After considering age-adjusted mortality rates, research indicated that African-American and Hispanic PF patients had worse lung function at the time of listing for lung transplantation. This suggests that race and ethnicity play an important role in how pre-referral medical care is provided to patients, when they are referred, and what disease progression may look like. Diverse participation in research is crucial to better understand and treat IPF among all communities.
Advocating for More Research
The PFF is actively working to increase the diversity of patient representation to continue making strides in research. In July of 2022, the organization launched the PFF Community Registry, which is open to patients with PF or ILD, including those who have received a lung transplant, as well as caregivers and biological family members of patients with PF or ILD across the United States. Featuring voices from all different diagnoses, regions, races, ethnicities, and ages will allow the Community Registry to provide the clearest picture of the disease for researchers.
“The ultimate goal of the PFF Registry is to give researchers access to crucial data from a diverse cross-section of participants to accelerate research and, hopefully, help find a cure,” said Junelle Speller, vice president of the PFF Registry. “We understand that participating in research can be intimidating for some, but we need wide participation to help improve the care and quality of life for those with pulmonary fibrosis.”
Speller extends her expertise along with others on this important topic in a webinar titled, “Diversity in Research: Benefits for All”.
Clinical trials are another vital research tool that will benefit from a diverse array of participants, as they help determine effectiveness of new treatment options for anyone with the disease. The PFF Clinical Trial Finder, an easy-to-navigate tool, enables users to match and connect with trials in the United States. After completing a short questionnaire, patients receive a preliminary list of relevant and feasible trials. The Clinical Trial Finder provides contact information for nearby sites so patients can reach out with questions about enrollment.
PFF Resources and Care for Individuals Affected by PF
The PFF provides disease education and research to help patients, families, caregivers, and healthcare providers better understand the disease. In addition, the PFF’s Care Center Network offers 81 medical centers in 35 states that provide expert, multidisciplinary care for people living with pulmonary fibrosis. Patients and their loved ones are encouraged to utilize the PFF’s patient resources including support groups, ongoing webinars, downloadable information guides and checklists, and more. The PFF also continues to expand its “Portraits of PF” series to highlight stories from the diverse community of patients, caregivers, and healthcare professionals affected by PF and ILD.
For more information about PF symptoms, risk factors and treatment options, visit www.AboutPF.org.
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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 unparalleled support and education resources for patients, caregivers, family members, and health care providers. The PFF has a three-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).
1 Adegunsoye Ayodeji, Oldham Justin M., Bellam Shashi K., et al, African-American race and mortality in interstitial lung disease: a multicentre propensity-matched analysis. European Respiratory Journal. 2018; 51: 1800255 https://erj.ersjournals.com/content/51/6/1800255.long
2 Lederer David J., Arcasoy S.M., Wilt J.S., Bagiella E., D’Ovidio F., Sonett J.R., Dawut S.M., Racial and Ethnic Disparities in Idiopathic Pulmonary Fibrosis: A UNOS/OPTN Database Analysis. American Journal of Transplantation, 2006; 6 (10): p. 2436-2442